Has another full week almost gone by? The days since August 31st have blown by; I have trouble comprehending its Halloween on Monday. This year, we have simple costumes and simple pictures and that will have to do. Lucy's 6 month pictures next month won't be the nice professional ones either, but I can try to take some pictures of her in the cute outfit we had for my cousins wedding. I still feel bad not being able to make that - I had such high goals of being on the amazing road to recovery, headed back to work, and eagerly awaiting my first foods by Thanksgiving.
Last night I took a Xanax and ambien. I know they can be addicting, but I hate drugs and I'll be off this as soon as I possible can. I just need to get though the days. So, the 20 mgs just continued to make me feel like crap. I went to bed when Adam dropped us off at my parents and just tossed and turned. I went back down at 10ish for another juice box and headed back upstairs. Again, no sleep. My pulse continues at 116, my body shakes, my legs are restless, I can't focus well, I'm anxious - mostly from the pulse thing, I started another period a week early which I think caused an increase in the hot flashes and I think some diahearria and cramping - its just been nuts. I get all teary just talking about it, and wondering what God has in store for us.
My parents took my pulse and Bp around lunch and my Bp was normal, pulse was high. I left a message for Dr Gonsalves and the response was to increase from 20 to 30 mg. I asked her if this was normal and she said no. For some reason I'm the only person that struggles with prednisone and the elemental diet changes. With only 300 cases of EoG, I'm not sure that's what I wanted to hear. I feel embarrassed that my body doesn't handle the tapering and drinks better - but it doesn't. And the drinks are worse when the prednisone tapers. I know my body and it is what it is. I was soooo bummed as this sets back the whole schedule, BUT I need to be able to literally function too! I called my favorite Dr. Gordon and she agreed with the increase. She also agreed to fill out any disability stuff needed as she said I was in no condition to work. She thought I should split the prednisone out in 3 doses vs all at once so my symptoms were less in the am, and thought a gradual taper like 2.5 every 5 days was reasonable. Slow. But my body obviously needs things a little slower after nearly 6 weeks of this. She also wanted me to ramp up on the Xanax and use the ambien. She knows I need something to get through this and said she would talk to dr Gonsalves due to her concerns. I'm so grateful for her in my life - she is my best support medically right now. So, mom lent me 10mg more pred and I took it there. So, back to 30. Yep, it means food trials and endoscopy delays, but I need to feel better.
I got 6 juice boxes down which is not 7 but it's nutrition. I'm at the point of forcing it, but I do it as I need to. I drink that and a ginger ale and the rest water. The prednisone gives most people increased appetite but not me. It would be nice to crave a juice box :) My mom got Drew some Little juicy juice boxes so he could drink one with me at the table. He seemed to enjoy that - it was cute. I miss my kids, even when they are right next to me. I'm ready to get better.
I told my parents I need to do a better schedule - maybe walk around the block and read and do my relaxation 2x a day. I need to build up strength and I should start at 30 mg as dropping next week may be another challenge. My parents are awesome with the kids and taking care of them; I love seeing our babies so happy with them. I love when Lucy holds my moms face and tries to eat her nose and when Drew does his walks with my dad and he looks so small and points at things for grandpa to see. I give my parents, Adam and kids a lot of hugs - I'm so incredibly grateful for all that they do for me. We WILL get through this. I'm not setting any more timelines or goals - just letting the next few weeks play themselves out. No plans for the holidays, just keeping life open. God has His own plan for me and my family.
Thank you to all of my blog fans for your continued compassion and words of encouragement. I enjoy reading your notes and knowing I have your prayers and support. Please continue to pray that God's will be done and that I can have a much better recovery in the next few weeks. A few more months to wait for solid food trials is worth it if I can feel more like me again!
Thursday, October 27, 2011
Wednesday, October 26, 2011
Praying for improvement...
Monday continued on like Sunday; 20mg still made me feel awful. I went to my parents in the afternoon, in the worst condition. I could barely keep from crying. I was regurgitating the juice boxes and the effects of the prednisone were miserable still - even 4 days being at 20. I sent a message to Dr. Taft, but didn't get a response. I knew I would talk to her Tuesday at 11, so I figured I would wait. I also called Dr. Gonsalves' office too, to determine what was best to do. I called Dr. Gordon, and she increased my xanax (Northwestern is not happy about that - but my pulse is over 110 ALWAYS), and I need something to help manage these horrible symptoms.
Monday night, I had only had 6 juice boxes (2 short of goal), but by 7pm felt pretty decent, and helped get Drew ready for bed. Lucy was up again in the middle of the night, making the nights continually difficult and it impossible for me to get back to sleep.
Tuesday morning, I dropped to 15mg. I was hoping to do this so that I could be at 10 by Thursday per the plan. Big mistake. I was a mess on Tuesday. I was in tears on the phone with Dr. Taft, and met with my primary care (who basically said he couldn't help me; and wants me to see a psychiatrist). I went over to my parents and just spent the afternoon talking with them. I could only get 5 juice boxes down - the regurgitation was so bad. I tried even a bit of the neocate formula, but that didn't sit well. I called Dr. Gonsalves again, and left a second message as no one returned mine from Monday morning. They pushed my prednisone back up to 20 mg. I feel I've backtracked, but I've got to get back to feeling good before we can keep going. I'm just a mess right now.
Adam tried to get Drew ready for bed last night, and Drew screamed his head off while I took care of Lucy. It was horrifying to listen too. Drew wants Mommy to do everything for him, and he goes nuts if he doesn't get his way. It's really adding to the anxiety. We also started Lucy on rice cereal yesterday, in hopes that she'll start sleeping through the night soon. Of course, she took well to the two servings yesterday, but I was up with her at night. She was wide awake after drew went to bed, so we were up until after 10 trying to get her to go to sleep.
This illness is a pain in the ass. I so want this to be done - I want to be off the prednisone, have a good scope, and get back to eating again. I want God to take this burden from me, so I can be with my family. I want my kids to behave and not act out so it doesn't add to my stress of everything else. It's been a difficult several days to say the least. Please continue to pray as will I. God's will be done.
Monday night, I had only had 6 juice boxes (2 short of goal), but by 7pm felt pretty decent, and helped get Drew ready for bed. Lucy was up again in the middle of the night, making the nights continually difficult and it impossible for me to get back to sleep.
Tuesday morning, I dropped to 15mg. I was hoping to do this so that I could be at 10 by Thursday per the plan. Big mistake. I was a mess on Tuesday. I was in tears on the phone with Dr. Taft, and met with my primary care (who basically said he couldn't help me; and wants me to see a psychiatrist). I went over to my parents and just spent the afternoon talking with them. I could only get 5 juice boxes down - the regurgitation was so bad. I tried even a bit of the neocate formula, but that didn't sit well. I called Dr. Gonsalves again, and left a second message as no one returned mine from Monday morning. They pushed my prednisone back up to 20 mg. I feel I've backtracked, but I've got to get back to feeling good before we can keep going. I'm just a mess right now.
Adam tried to get Drew ready for bed last night, and Drew screamed his head off while I took care of Lucy. It was horrifying to listen too. Drew wants Mommy to do everything for him, and he goes nuts if he doesn't get his way. It's really adding to the anxiety. We also started Lucy on rice cereal yesterday, in hopes that she'll start sleeping through the night soon. Of course, she took well to the two servings yesterday, but I was up with her at night. She was wide awake after drew went to bed, so we were up until after 10 trying to get her to go to sleep.
This illness is a pain in the ass. I so want this to be done - I want to be off the prednisone, have a good scope, and get back to eating again. I want God to take this burden from me, so I can be with my family. I want my kids to behave and not act out so it doesn't add to my stress of everything else. It's been a difficult several days to say the least. Please continue to pray as will I. God's will be done.
Sunday, October 23, 2011
Long Weekend
This weekend was a low point for me. I really struggled with the side effects of the prednisone, and dealing with so many issues. On Friday, I dropped to 20mg of prednisone and felt miserable. I also started the chromalin and new antibiotic for thrush, as well as a multi-vitamin. We hung around the house Saturday, and I seemed to do ok. Saturday night, I couldn't sleep. My stomach felt all messed up, and by Sunday morning, I was a mess. Hot sweats, no sleep, irritable, mood swings, anxious, in the bathroom 3x, just all in all - yucky. We tried to get to 10:45 mass, arriving late, but had to leave early. I just couldn't handle how bad I felt, and I didn't even have enough patience to be with the kids - who were actually being pretty good.
I took a Zanax this morning, and another one tonight, as I still feel like crap. The nutrient drinks didn't sit well all day; I burped and regurgitated/reswallowed a lot of it. That's always a concern when we're trying to reduce inflammation, and things seem aggravated. I just have no idea what's going on, and I'm scared. I had a long talk with Adam over dinner tonight. We agreed we wouldn't go to the wedding this weekend; my health is proving I'm not ready to make any sort of trip. I feel awful about it; all the planning and a personal goal - but I don't feel stable enough to take a chance and have all of us out of state and me feeling like this. Adam agreed for me to just keep taking the Zanax for now; I obviously need something to help me through this.
I emailed work and said that I won't come back until after Thanksgiving, when I hope to be off the prednisone. I truly hope that's what's causing all of this; including the anxiety. Every drug I'm on has GI side effects, so the fact that the drinks aren't sitting well could be due to anxiety, or some of the meds. There is so many unknowns.
My tapering should end Thanksgiving week. I have my endoscopy to see if I'm in remission on 12/12, followed by allergy testing on 12/13 (tentative), and followups with doctors on 12/15. I see Dr. G in the meantime as well.
I hate feeling like this. I hate being scared. I hate these mood swings and feeling paranoid. I'm sure my mental instability isn't helping calm my GI tract either. I read of a child that had EoG and died from it, as the allergens just kept on the attack. I worry about my kids, and watching Drew shudder every time he drinks milk. What do that they have; are they ok? I worry about my parents; they have so much to burden with David and now me and my dad's eyes - my mom's lupus and headaches flare.
I'm still trying to work with the disability company to get benefits while I'm out; that's been a mess. It's no fun being sick and worrying about things financially as well.
I prayed and need to find faith in all this. I really want to get well. I feel I've hit a wall. Please continue to pray for me and my family.
I took a Zanax this morning, and another one tonight, as I still feel like crap. The nutrient drinks didn't sit well all day; I burped and regurgitated/reswallowed a lot of it. That's always a concern when we're trying to reduce inflammation, and things seem aggravated. I just have no idea what's going on, and I'm scared. I had a long talk with Adam over dinner tonight. We agreed we wouldn't go to the wedding this weekend; my health is proving I'm not ready to make any sort of trip. I feel awful about it; all the planning and a personal goal - but I don't feel stable enough to take a chance and have all of us out of state and me feeling like this. Adam agreed for me to just keep taking the Zanax for now; I obviously need something to help me through this.
I emailed work and said that I won't come back until after Thanksgiving, when I hope to be off the prednisone. I truly hope that's what's causing all of this; including the anxiety. Every drug I'm on has GI side effects, so the fact that the drinks aren't sitting well could be due to anxiety, or some of the meds. There is so many unknowns.
My tapering should end Thanksgiving week. I have my endoscopy to see if I'm in remission on 12/12, followed by allergy testing on 12/13 (tentative), and followups with doctors on 12/15. I see Dr. G in the meantime as well.
I hate feeling like this. I hate being scared. I hate these mood swings and feeling paranoid. I'm sure my mental instability isn't helping calm my GI tract either. I read of a child that had EoG and died from it, as the allergens just kept on the attack. I worry about my kids, and watching Drew shudder every time he drinks milk. What do that they have; are they ok? I worry about my parents; they have so much to burden with David and now me and my dad's eyes - my mom's lupus and headaches flare.
I'm still trying to work with the disability company to get benefits while I'm out; that's been a mess. It's no fun being sick and worrying about things financially as well.
I prayed and need to find faith in all this. I really want to get well. I feel I've hit a wall. Please continue to pray for me and my family.
Friday, October 21, 2011
Friday...finally
Yesterday was a very long day. I was up with Lucy for her nightly feeding at 2:30, and didn't get a lot of sleep. I then helped get the kids ready to go to Mom & Dad's, and was wide awake after that. So, I showered, did my hair and makeup, and got all ready to go. It was pretty exhausting just doing that, but it was nice to get made up for the NWMH visits. I left for Mom and Dad's about 9:30, and played with Drew and Lucy until Pat Jarot arrived at 11:30.
I drove downtown and Mom came along in case I got tired. I was tired, but needed to keep driving and trying new things. We met with Beth, then Dr. Gonsalves, then Dr. Taft. All were excited to see my progress and me looking more "human". I was in bad shape the last few times they saw me. Beth discussed the food trials a bit, the need to add a few more things into the weekly lab work, ordering more juice boxes, and that she wanted to see me right before we start the trials. Dr. G and her resident then met with me. They dropped me down to 20mg, which I started today. I'm ready to come down off the prednisone, as the symptoms are really hard for me to manage - the blurry vision, dizziness, heart palpitations, shakiness and lack of sleep. Plus, I just finished treating a yeast infection, and was diagnosed yesterday with oral thrush. Good grief... more meds. I'm really prone to infections lately. Dr. G wants me to call her again next week, and we will probably drop another 10mg, then drop by 2.5 each week, and be done with prednisone by Thanksgiving. Then, she wants me on the formula diet for 3 weeks post-steroids, so we can ensure the prednisone is out of my system before the food trials. Then, we do allergy testing and an endoscopy. So, it sounds like food trials will start around the new year. I'm supposed to see Dr. G in 3 weeks, but she was booked until 12/15. If all I'm doing is just dropping prednisone until then, it may not be worth going in, but it's up to her if she can fit me in. It's not easy to get in to the specialists at all.
We then went to see Dr. Taft, and she was happy with the progress. My biggest issue really is managing the symptoms of the steroids. Other than that, I feel pretty decent but tire easily (probably with lack of sleep). I talked to her about returning to work, and she wanted to make sure I gradually worked my way back and didn't overdo it. My work has been really flexible, but it's hard setting expectations when you have no idea what the future holds. This is a very busy time at work pre-holiday, so I know I'm going back to a higher level of stress than usual. I could feel the uneasiness start to set in during my discussion with her.
After that, I drove the 1.5 hours home. I was totally exhausted after that. I warmed up dinner that Pat Jarot brought over for Dad, Drew, and Adam, and held Lucy while they ate. Drew was crabby again, as he missed his morning nap. By 6, I was ready to leave my parents; I really just wanted to go home and relax. When I'm tired, it takes every ounce of energy not to lose my patience with the tantrums. Nights like that, I usually just pick him up and we get stuff done. I don't bother to reason with him or try to coax him. We got home, Drew had a snack as he wouldn't eat his dinner, Kathleen dropped off Reeses, we got Drew ready for bed, then Lucy, then I did the dishes, and I went to sleep at 8:30. Adam stayed up late to watch the ball game; it amazes me when he says how tired he is that he won't go to bed early when he can. I guess it's a guy thing to watch the world series.
This morning, Lucy slept until 4:45. Since she didn't nap at all yesterday, it was expected, but really great she CAN go from 8:15-4:45 with no feedings. Adam fed her at 4:45, and she fell back asleep after the feeding. We woke her at 6:30 to go to Grandma and Grandpa's after I got Drew ready. Drew again was really fussy and whining at everything. It's mentally exhausting.
I have indigestion this morning - no idea why, and my abdomen was pretty sore. I ended up going to the bathroom - quite a lot, and looking different than normal. My mind races... another infection? Stress of yesterday? I'm really nervous about making all the med changes, and if I'm getting all the right nutrients. It's hard not to worry, but I'm trying to be patient.
My goal for today is just to rest after yesterday. I need to pick up some new prescriptions, and I'll pick up the kids in the evening. Better to rest, as Mom and Dad leave tomorrow for a wedding and Adam and I will have the weekend to ourselves. I need to be prepared; he wants to cut the grass, so I need to get my rest to be able to help out as much as I can.
I'm grateful things are improving, anxious to know what the next several months will hold, and hopeful all the med changes will go smoothly. Just taking things one day at a time... still :)
I drove downtown and Mom came along in case I got tired. I was tired, but needed to keep driving and trying new things. We met with Beth, then Dr. Gonsalves, then Dr. Taft. All were excited to see my progress and me looking more "human". I was in bad shape the last few times they saw me. Beth discussed the food trials a bit, the need to add a few more things into the weekly lab work, ordering more juice boxes, and that she wanted to see me right before we start the trials. Dr. G and her resident then met with me. They dropped me down to 20mg, which I started today. I'm ready to come down off the prednisone, as the symptoms are really hard for me to manage - the blurry vision, dizziness, heart palpitations, shakiness and lack of sleep. Plus, I just finished treating a yeast infection, and was diagnosed yesterday with oral thrush. Good grief... more meds. I'm really prone to infections lately. Dr. G wants me to call her again next week, and we will probably drop another 10mg, then drop by 2.5 each week, and be done with prednisone by Thanksgiving. Then, she wants me on the formula diet for 3 weeks post-steroids, so we can ensure the prednisone is out of my system before the food trials. Then, we do allergy testing and an endoscopy. So, it sounds like food trials will start around the new year. I'm supposed to see Dr. G in 3 weeks, but she was booked until 12/15. If all I'm doing is just dropping prednisone until then, it may not be worth going in, but it's up to her if she can fit me in. It's not easy to get in to the specialists at all.
We then went to see Dr. Taft, and she was happy with the progress. My biggest issue really is managing the symptoms of the steroids. Other than that, I feel pretty decent but tire easily (probably with lack of sleep). I talked to her about returning to work, and she wanted to make sure I gradually worked my way back and didn't overdo it. My work has been really flexible, but it's hard setting expectations when you have no idea what the future holds. This is a very busy time at work pre-holiday, so I know I'm going back to a higher level of stress than usual. I could feel the uneasiness start to set in during my discussion with her.
After that, I drove the 1.5 hours home. I was totally exhausted after that. I warmed up dinner that Pat Jarot brought over for Dad, Drew, and Adam, and held Lucy while they ate. Drew was crabby again, as he missed his morning nap. By 6, I was ready to leave my parents; I really just wanted to go home and relax. When I'm tired, it takes every ounce of energy not to lose my patience with the tantrums. Nights like that, I usually just pick him up and we get stuff done. I don't bother to reason with him or try to coax him. We got home, Drew had a snack as he wouldn't eat his dinner, Kathleen dropped off Reeses, we got Drew ready for bed, then Lucy, then I did the dishes, and I went to sleep at 8:30. Adam stayed up late to watch the ball game; it amazes me when he says how tired he is that he won't go to bed early when he can. I guess it's a guy thing to watch the world series.
This morning, Lucy slept until 4:45. Since she didn't nap at all yesterday, it was expected, but really great she CAN go from 8:15-4:45 with no feedings. Adam fed her at 4:45, and she fell back asleep after the feeding. We woke her at 6:30 to go to Grandma and Grandpa's after I got Drew ready. Drew again was really fussy and whining at everything. It's mentally exhausting.
I have indigestion this morning - no idea why, and my abdomen was pretty sore. I ended up going to the bathroom - quite a lot, and looking different than normal. My mind races... another infection? Stress of yesterday? I'm really nervous about making all the med changes, and if I'm getting all the right nutrients. It's hard not to worry, but I'm trying to be patient.
My goal for today is just to rest after yesterday. I need to pick up some new prescriptions, and I'll pick up the kids in the evening. Better to rest, as Mom and Dad leave tomorrow for a wedding and Adam and I will have the weekend to ourselves. I need to be prepared; he wants to cut the grass, so I need to get my rest to be able to help out as much as I can.
I'm grateful things are improving, anxious to know what the next several months will hold, and hopeful all the med changes will go smoothly. Just taking things one day at a time... still :)
Wednesday, October 19, 2011
Wednesday 10/19
Feeling pretty good today. I've cut back on Zanax to 1x day, and seem to be adjusting well. I think the anxiety of everything is getting better now that I know I'm getting in nutrients and building up strength. My GI tract seems calm and I go to the bathroom like I used to :) I just have to ensure I drink my gatorade and enough water to stay hydrated with all the juices. I eat my starbursts to crave water so I drink it. It's funny to feel dehydrated at the end of a day after drinking juice boxes and gatorade...
My energy is coming back. I usually rest in the morning after Adam takes the kids to Mom and Dads. Today I plan to get a prescription at Walgreens and go to CostCo. I need to do my relaxation tape in the afternoon as well. I did a lot of laundry yesterday; really trying to keep active but pace myself. I warm up dinners, clean dishes, do some laundry, etc. The hardest part is doing shower, hair, makeup, then going out - it's a lot all at once, but that's my goal for next week to get in that routine. I'm hoping to go back to work in some capacity in November - I'm going to go stir crazy otherwise.
I meet with 3 doctors at NWMH tomorrow - Beth, then Dr. Gonsalves, then Dr. Taft. Hopefully we'll get some more information on next steps. I will likely drop the prednisone tomorrow to 25 mg; that means 5-6 weeks to go before biopsies and 9 weeks before allergy testing. It's like a countdown to Christmas.
I've gained 2 lbs on the juice boxes, that have been successfully digested for almost 2 weeks. I look thin, but am exactly where I was before I got pregnant with Drew and feel comfortable with it. Each day gets a little better, and I thank God for that.
My energy is coming back. I usually rest in the morning after Adam takes the kids to Mom and Dads. Today I plan to get a prescription at Walgreens and go to CostCo. I need to do my relaxation tape in the afternoon as well. I did a lot of laundry yesterday; really trying to keep active but pace myself. I warm up dinners, clean dishes, do some laundry, etc. The hardest part is doing shower, hair, makeup, then going out - it's a lot all at once, but that's my goal for next week to get in that routine. I'm hoping to go back to work in some capacity in November - I'm going to go stir crazy otherwise.
I meet with 3 doctors at NWMH tomorrow - Beth, then Dr. Gonsalves, then Dr. Taft. Hopefully we'll get some more information on next steps. I will likely drop the prednisone tomorrow to 25 mg; that means 5-6 weeks to go before biopsies and 9 weeks before allergy testing. It's like a countdown to Christmas.
I've gained 2 lbs on the juice boxes, that have been successfully digested for almost 2 weeks. I look thin, but am exactly where I was before I got pregnant with Drew and feel comfortable with it. Each day gets a little better, and I thank God for that.
Monday, October 17, 2011
Monday
Got to relax with my family yesterday. We went shopping for a bit, and I sat in the lawn and trimmed a few flowers back until I got tired (doesn't take much). It was nice to get outside though, but even the smallest things make me exhausted. I was shaking like a leaf when I came in; must be the steroids or the nutrition imbalances. If I miss juice boxes, I get all weird too.
I'm still on 30mg of prednisone until Thursday, when we have the big Northwestern day. Mom will take me downtown to see Dr. Gonsalves, Dr. Taft, and Beth. Pat Jarot will help my dad with the kids until Adam comes home from work, which I'm thankful for. I had my weekly blood draw this morning; last week's results look ok, so I think I'm getting in all my nutrients ok which is good. I drink most of my boxes between 7-7, so I don't get reflux at night. With 7-8 boxes, it's very manageable, just lots to lug around everywhere, with gatorade and water in tow. It's becoming more routine though.
I was up with Lucy for over an hour in the middle of the night, so it's been a long morning. I'm glad I shower at night, or else I'd be even worse in the morning. I drove the kids to Mom and Dads, and am here resting today. I took Drew to the Dr. with me for my blood labs, to ensure he didn't have bronchitis. So far, so good. We're going to hold off on the flu shot though; he's got enough to deal with. He's still very much into mommy doing everything for him.
I hope to cut back on the Zanax this week, before Thursday's drop on the prednisone, and increase the muscle relaxing program from the psychologist. She really wants me off anxiety meds and to manage this mentally, as the year ahead will require much better management of stress and keeping my GI tract calm as we do food trials. It's weird not knowing what will happen with each med change, but things are getting better every day. I look forward to not being so tired, but maybe the reduction of Zanax will help.
It's been nice starting to feel better; I'm sure by the holidays I'll be back to my old self and looking forward to new food (with some nervousness of relapse, but ready to move ahead). I do miss food more and more each day, but am grateful to be stable for now!
I'm still on 30mg of prednisone until Thursday, when we have the big Northwestern day. Mom will take me downtown to see Dr. Gonsalves, Dr. Taft, and Beth. Pat Jarot will help my dad with the kids until Adam comes home from work, which I'm thankful for. I had my weekly blood draw this morning; last week's results look ok, so I think I'm getting in all my nutrients ok which is good. I drink most of my boxes between 7-7, so I don't get reflux at night. With 7-8 boxes, it's very manageable, just lots to lug around everywhere, with gatorade and water in tow. It's becoming more routine though.
I was up with Lucy for over an hour in the middle of the night, so it's been a long morning. I'm glad I shower at night, or else I'd be even worse in the morning. I drove the kids to Mom and Dads, and am here resting today. I took Drew to the Dr. with me for my blood labs, to ensure he didn't have bronchitis. So far, so good. We're going to hold off on the flu shot though; he's got enough to deal with. He's still very much into mommy doing everything for him.
I hope to cut back on the Zanax this week, before Thursday's drop on the prednisone, and increase the muscle relaxing program from the psychologist. She really wants me off anxiety meds and to manage this mentally, as the year ahead will require much better management of stress and keeping my GI tract calm as we do food trials. It's weird not knowing what will happen with each med change, but things are getting better every day. I look forward to not being so tired, but maybe the reduction of Zanax will help.
It's been nice starting to feel better; I'm sure by the holidays I'll be back to my old self and looking forward to new food (with some nervousness of relapse, but ready to move ahead). I do miss food more and more each day, but am grateful to be stable for now!
Saturday, October 15, 2011
Saturday
Yesterday was a long day; I pushed a bit too hard. It's nice feeling the energy from the nutrients but I'm really still managing the effects of the meds and always feel tired. It helps focusing in the kids, but is easy to forget how much you've done before you've overdone it. Both these kids have serious energy.
Drew has been very needy lately and is fine with me but screams with Daddy. I wish it wasn't like that, but at least I know if I take care of him the tantrums go away. I may stay home some of this week, as I think me being at mom and dads can be more disruptive to the routine. We had bagel dogs for dinner last night; Adam came home sick and I figured drew would at least eat it. We played then had him in bed after major tantrums by 8ish. Lucy then ate and played for another 45 min; we went to bed by 9:30. I was too tired to even shower.
I am up every hour; not sure why, but my numbness and achiness kept me up. Third day at 30 mgs; we drop again potentially next Thursday. With the cold and infection, and me trying to do more, I wear out fast. But each day is better. I took care of the kids this morning when Adam went to get groceries and get his haircut. I told him to go as Lucy just went down and I could manage drew. Sure enough, 5 minutes layer Lucy is up. That baby wont sleep! She was down at 8:46pm last night and slept till 3:30. We tried ignoring her, then pacifying her - nothing. Needs the bottle and falls back asleep. Up again at 6:30 so Adam brought her to our bed and we played and napped until 8:30 when drew got up (his cold has wore him down so we figured it was best to let him wake up naturally).
We hope to go to 4pm mass with mom, dad, and Dave then out to dinner. Mom, Lucy and I can't eat, so it's cheap to go out :) I'm anxious about doing my hair, so I'll just have to pace myself to make it there. I think my expectations outweigh what I should make as goals for myself. My hands are very shaky as are my legs; I think that's the worst. I'm excited to be improving every day.
Tomorrow is rest at home; the rest of the week is dr visits (northwestern all day Thursday). Im glad not to have to worry about work right now; but it'll be nice to get back to my old life again. Just focused on health and family for now, and that's plenty :)
Drew has been very needy lately and is fine with me but screams with Daddy. I wish it wasn't like that, but at least I know if I take care of him the tantrums go away. I may stay home some of this week, as I think me being at mom and dads can be more disruptive to the routine. We had bagel dogs for dinner last night; Adam came home sick and I figured drew would at least eat it. We played then had him in bed after major tantrums by 8ish. Lucy then ate and played for another 45 min; we went to bed by 9:30. I was too tired to even shower.
I am up every hour; not sure why, but my numbness and achiness kept me up. Third day at 30 mgs; we drop again potentially next Thursday. With the cold and infection, and me trying to do more, I wear out fast. But each day is better. I took care of the kids this morning when Adam went to get groceries and get his haircut. I told him to go as Lucy just went down and I could manage drew. Sure enough, 5 minutes layer Lucy is up. That baby wont sleep! She was down at 8:46pm last night and slept till 3:30. We tried ignoring her, then pacifying her - nothing. Needs the bottle and falls back asleep. Up again at 6:30 so Adam brought her to our bed and we played and napped until 8:30 when drew got up (his cold has wore him down so we figured it was best to let him wake up naturally).
We hope to go to 4pm mass with mom, dad, and Dave then out to dinner. Mom, Lucy and I can't eat, so it's cheap to go out :) I'm anxious about doing my hair, so I'll just have to pace myself to make it there. I think my expectations outweigh what I should make as goals for myself. My hands are very shaky as are my legs; I think that's the worst. I'm excited to be improving every day.
Tomorrow is rest at home; the rest of the week is dr visits (northwestern all day Thursday). Im glad not to have to worry about work right now; but it'll be nice to get back to my old life again. Just focused on health and family for now, and that's plenty :)
Friday, October 14, 2011
Friday...
I slept ok last night; it was a long day with wrapping up laundry and paying bills when we got home. Lucy doesn't nap well during the day, and then goes to bed about 9. It's nice for Adam and I as we've been going to bed at 9:30, but when she's up at 3:30-4 ready to eat, it makes for long nights. One more month until solid foods, and maybe that will hold her out. Drew's been pushing the limits too, lots of tantrums and no-no's, which makes for a very tired Mommy and Daddy. But we've been trying to be patient and consistant with our response.
Adam picked up Dave from the train station after work; Dave came over with Adam for dinner, and the boys ate at the kitchen table while Mom held lucy and I had my juice boxes. Dave seems to be pretty tired per usual, moreso with the photophoresis, so it's one day at a time. He had 2 treatments this week, and is off for a week. They're also going to start him on the white blood cell injections, as he had pneumonia so much last winter.
Lucy's cold seems to be lessening; Drew's is ok, but I'm watching his cough. He had bronchitis last time, and I felt bad waiting to get him check. We'll give it through the weekend. Adam is doing better as well, and guess who now has a sore throat. And another infection... :) Never fails. Minor stuff compared to everything else, so I keep my liquids in and keeping downing the 7 boxes a day of juice. My goal is to make it to the wedding in two weeks. I'm feeling stronger each day, but the drop in prednisone and now the cold symptoms and just the tiredness from 7 weeks of this has worn on me. I hope to get to my relaxation stuff from the psychologist this weekend, and maybe start to walk the dog. He only goes around the block, so it's a good start to get moving more. I tire very quickly.
I did drive today, which I was proud of. Got the kids all packed, and headed to Mom and Dad's. Drew wanted me to give him his morning milk, then we had a quick breakfast and headed to Discount Tire so Mom and Dad could get the tires looked at before the Capps' wedding they leave for next weekend. Just a short trip, but better to have the car in shape for the drive. They upsold them new tires, so we waited in the store. Drew talked to all the customers with his "hi-hi's", and Lucy did good with my Mom. I watched Drew and talked to some ladies there - one was from church, who had accidentally put me in the prayers of the deceased the week I got really sick. She felt so bad, but I laughed about it.
I called Dr. Gordon's office to get the results of the blood work from Wednesday, just to see if I'm getting the right nutrients in. The rest of the day will be relaxing and maybe running a few errands - I need to get gas in the car (had no idea, it's been 7 weeks) and go to CVS to pick up some essentials. I'm looking forward to getting over this cold, but am very grateful to feeling better each day. I may just make it to church this weekend...
Adam picked up Dave from the train station after work; Dave came over with Adam for dinner, and the boys ate at the kitchen table while Mom held lucy and I had my juice boxes. Dave seems to be pretty tired per usual, moreso with the photophoresis, so it's one day at a time. He had 2 treatments this week, and is off for a week. They're also going to start him on the white blood cell injections, as he had pneumonia so much last winter.
Lucy's cold seems to be lessening; Drew's is ok, but I'm watching his cough. He had bronchitis last time, and I felt bad waiting to get him check. We'll give it through the weekend. Adam is doing better as well, and guess who now has a sore throat. And another infection... :) Never fails. Minor stuff compared to everything else, so I keep my liquids in and keeping downing the 7 boxes a day of juice. My goal is to make it to the wedding in two weeks. I'm feeling stronger each day, but the drop in prednisone and now the cold symptoms and just the tiredness from 7 weeks of this has worn on me. I hope to get to my relaxation stuff from the psychologist this weekend, and maybe start to walk the dog. He only goes around the block, so it's a good start to get moving more. I tire very quickly.
I did drive today, which I was proud of. Got the kids all packed, and headed to Mom and Dad's. Drew wanted me to give him his morning milk, then we had a quick breakfast and headed to Discount Tire so Mom and Dad could get the tires looked at before the Capps' wedding they leave for next weekend. Just a short trip, but better to have the car in shape for the drive. They upsold them new tires, so we waited in the store. Drew talked to all the customers with his "hi-hi's", and Lucy did good with my Mom. I watched Drew and talked to some ladies there - one was from church, who had accidentally put me in the prayers of the deceased the week I got really sick. She felt so bad, but I laughed about it.
I called Dr. Gordon's office to get the results of the blood work from Wednesday, just to see if I'm getting the right nutrients in. The rest of the day will be relaxing and maybe running a few errands - I need to get gas in the car (had no idea, it's been 7 weeks) and go to CVS to pick up some essentials. I'm looking forward to getting over this cold, but am very grateful to feeling better each day. I may just make it to church this weekend...
Thursday, October 13, 2011
Tired, but improving
Slept another full night last night after getting the kids in bed. I washed the baby bottles and wiped up the kitchen countertops. It may seem like nothing, but after 7 weeks, I take pride in the simplest accomplishments. I even did a load of laundry of kids clothes; things are piling up at home with 4 people.
I helped get the kids ready in the morning and Adam drove us over to my parents. I was just exhausted all day, either from the coreg med stopped or the drop to 30mg of prednisone. Their cleaning lady was here so I just took Lucy in the back porch and let her fall asleep on me. I didn't sleep well but it was something. I helped with the kids some today and kept up with the juice boxes. Just two more to go. Dr Gonsalves office called to keep me at 30mg if prednisone for 1 more week; so I'll probably change that next Thursday at Northwestern. Mom is going to take me to see Dr. Gonsalves, Dr. Taft, and Beth. That'll be a long day! Pay Jarot will be helping my dad with the kids again until Adam gets home from work. I'm looking forward to getting more energy and driving again. I hate being reliant on everyone, but I know it's best for now and I'm getting stronger every day.
Drew and my mom are napping on the bed while Lucy is upstairs. I'm just typing, waiting for the phone call (just came), the doorbell for my mom's pills, or for Lucy. Everyone has had a cold so I'm grateful they are sleeping. David is coming in for the weekend tonight so we should have am update on him soon. That said, just heard Lucy. I'll go get her so mom and drew can rest. I like to save my afternoon naps so I can sleep without the ambien at night :)
I helped get the kids ready in the morning and Adam drove us over to my parents. I was just exhausted all day, either from the coreg med stopped or the drop to 30mg of prednisone. Their cleaning lady was here so I just took Lucy in the back porch and let her fall asleep on me. I didn't sleep well but it was something. I helped with the kids some today and kept up with the juice boxes. Just two more to go. Dr Gonsalves office called to keep me at 30mg if prednisone for 1 more week; so I'll probably change that next Thursday at Northwestern. Mom is going to take me to see Dr. Gonsalves, Dr. Taft, and Beth. That'll be a long day! Pay Jarot will be helping my dad with the kids again until Adam gets home from work. I'm looking forward to getting more energy and driving again. I hate being reliant on everyone, but I know it's best for now and I'm getting stronger every day.
Drew and my mom are napping on the bed while Lucy is upstairs. I'm just typing, waiting for the phone call (just came), the doorbell for my mom's pills, or for Lucy. Everyone has had a cold so I'm grateful they are sleeping. David is coming in for the weekend tonight so we should have am update on him soon. That said, just heard Lucy. I'll go get her so mom and drew can rest. I like to save my afternoon naps so I can sleep without the ambien at night :)
Wednesday, October 12, 2011
The Heart Tests
This morning, Adam dropped me and the kids of with my parents for daycare. I was able to help get the kids ready a bit this morning, but was so exhausted. I seem to do better with a nightly shower. I think if I can get the strength to dry my hair in the evening, I may just transition to night showers for a while. It's easier in the morning for sure, especially dealing with the meds on top of my balance and helping where I can. I put on makeup for the first time in weeks, which while not great, looked better than I had.
When we got to Mom and Dad's, Drew wanted me to give him a bottle, then we sat at the kitchen table and I had a juice box while everyone ate. Afterwards, I was so exhausted, I had to go back to bed. I slept for a good 2 hours, then got up and came downstairs to have another juice box and gatorade. I helped with the kids at bit, read some emails, and sat down with Drew and Lucy and my parents for lunch. Another one that smelled good and looked nice, but I had no desire to eat. Downed a 3rd juice box. Then I gave Lucy a bath in the kitchen sink, and packed up the diaper bag and juice boxes. Mom and I left with Lucy for the cardiologist. I sat in the back with Lucy, as she still doesn't like the car seat rides. She did fine with some entertainment though, and I was definitely thin enough to easily fit between the two big car seats. :)
When we got to the doctors office in aurora, I held Lucy for a bit while she slept on my shoulder. It was a nice feeling to just sit with her and hold her. I was called back for the EKG, and they went to get my mom in the waiting room. Mom was snoring, with Lucy sleeping on her. All the nurses were talking about them, and how cute a picture that was. I've seen my cardiologist since I was in college, so I'm by far one of their longest and youngest patients. Coming in with a 5-month old, talkative, happy baby also helps get good service.
I laughed when the EKG nurse said how amazingly thin I looked for having a 5 month old. It was a 10 minute test, so I gave her the rundown. I think she felt bad; it's not her fault, but I knew that would come up eventually. (Hearing people complain about weight when they are so thin has always been a pet peeve of mine; I'm just uber sensitive that I lost it without trying - not exactly what I was aiming for. It's sad how we focus so much on some things in live that are of so little consequence. Just being in the grocery store with my Aunt Kathy the other day, one of our nice neighbors saw us and asked how I was. I said each day was improving, and I appreciated the thoughts; I asked how she was, and she complained about all the baby weight from her 6 weeks old baby - it was hard to listen to; she's incredibly beautiful - model gorgeous - but is nursing and still recovering from the baby. The weight will come off, but you can't be rail thin that soon - it's just not even healthy. You just want to tell people to be grateful for their health and to be the with baby. The daily walks and time with the kids will take it off soon enough). Ok, anyways - I derailed there.
After the EKG, my Mom and Lucy were called back in so Mom could hear what Dr. Gordon had to say. I hugged her when she came in. It's been a really long 7 weeks, and in just a few days, she's been such a highlight. I remember when I had funny pacemaker feelings back last fall, and told her I was either anxious or pregnant. She was the one that ordered my blood work, and called me late on a Friday night to tell me I was pregnant. She was thrilled to do that as a cardiologist. She's that kind of lady; I am so grateful to have her as a friend and doctor.
She said she read the original Echo, and wasn't even sure where the 25-30 refraction rates came from. She really was interested in speaking to the cardiologist who called with the report on Thursday night. She also said the allergist, Dr. Saltoun, had called, and confirmed it was ok to speak with her. She said she would ask her about the Flu Shot and the best time to do (she's like me - we want to do it, but don't want anything else in my body right now).
She only wished I had called her sooner (I don't take the call the doctor on the cell phone thing lightly, but am glad I got confirmation I did the right thing). She said with the diet, she was amazed I had no swelling and looked/sounded great. The Mugga test showed a 65 refreaction rate, which is an exact measurement. She wanted me off the beta blockers ASAP today; no sense in being on more than I needed. She asked if I felt unusually tired (I had thought that even with 3 good nights sleep), and when I confirmed, she said this beta blocker did that, so it might make the mornings better. Yea! She asked about the palpitations, and I mentioned I really only noticed them when I had 4 nights/days of literally no sleep, and at times in the mornings when I would take the prednisone. She said both would cause it and it wasn't anything to be concerned with. It'll probably get better as I come down of the prednisone. We talked about a lot of things. She said should would keep a standing order for Zanax and Ambien in my chart, and renew it yearly, in case this ever happens again so I don't have the hassles (or her being out of town whenever I have an emergency - never fails). She went through and updated my MyChart information (it's an online program + iPhone app that keeps track of all my medical records, test results, etc), she ordered a weekly blood lab (I've been trying to get someone to do that for weeks) as she wanted to be sure my nutrients were in order for magnesium and potassium and she ordered it for at least 8 months to get through the food trials. She added in regular blood, plus the eosinophil counts, and she would monitor it for me. What a relief to have someone take some responsibility. I would see her again in 2-3 months, unless any of the blood work came back and she would need to notify me. What a relief. All was OK. She also mentioned that her daughter Hannah turned 13 and was training to be a babysitter. Dr. Gordon live literally 5 minutes from me, and since she has 2 daughters, it might work out great. Just having an extra hand on the weekends is great for Adam and I to do projects - Christmas Lights, yardwork, etc. Eventually, when the kids get familiar with someone, I'll feel even better to get out and go on a datenight. What a blessing to here more help is around.
After meeting with Dr. Gordon, we did a pacemaker test, and again, everything looked like normal. Ventricle paced at 100%; Atrium at 20%. Battery live 2.5 years left remaining, until I get the super cool upgrade that has a wireless connection to the doctor to send pacemaker checks in nightly (I have one that has a phone dial-in now, and it's a pain with VOIP and finding a dang phone that has an old ear and mouthpiece). Another normal test, and all was confirmed good.
We then went to the lab do get the blood work done, and left. We got home after 4:30. Lucy was fussy the way home, as she hadn't slept almost all day. I fed her, and "pillowtop" Grandpa rocked her to sleep. Mom went up to sleep, and Drew and Grandpa are now watching YouTube videos and drinking milk downstairs. Drew/Lucy/Adam all are sick with colds, so it's nice having Mom and Dad around to care for the kids and ensure they are ok. I think Dad may have brought something home from their North Carolina trip. Thankfully, I've been feeling good (but I've been washing my hands and avoiding touching my fast like the plague - I don't want anything else to happen).
Adam should be here in a few minutes to pick up us "kids" from daycare and bring us home. It's been a long day; these doctor visits and moving so much is exhausting for me, but I can tell I regain strength every day. Kathleen took Reeses today for a doggy play date, and will drop him off later this evening. Everyone is well cared for. It was a tiring, but all in all good day. I'm drinking my 6th juice box now. My goal is 7 for today.
Thank God for good spouces, parents, friends and one amazing doctor.
When we got to Mom and Dad's, Drew wanted me to give him a bottle, then we sat at the kitchen table and I had a juice box while everyone ate. Afterwards, I was so exhausted, I had to go back to bed. I slept for a good 2 hours, then got up and came downstairs to have another juice box and gatorade. I helped with the kids at bit, read some emails, and sat down with Drew and Lucy and my parents for lunch. Another one that smelled good and looked nice, but I had no desire to eat. Downed a 3rd juice box. Then I gave Lucy a bath in the kitchen sink, and packed up the diaper bag and juice boxes. Mom and I left with Lucy for the cardiologist. I sat in the back with Lucy, as she still doesn't like the car seat rides. She did fine with some entertainment though, and I was definitely thin enough to easily fit between the two big car seats. :)
When we got to the doctors office in aurora, I held Lucy for a bit while she slept on my shoulder. It was a nice feeling to just sit with her and hold her. I was called back for the EKG, and they went to get my mom in the waiting room. Mom was snoring, with Lucy sleeping on her. All the nurses were talking about them, and how cute a picture that was. I've seen my cardiologist since I was in college, so I'm by far one of their longest and youngest patients. Coming in with a 5-month old, talkative, happy baby also helps get good service.
I laughed when the EKG nurse said how amazingly thin I looked for having a 5 month old. It was a 10 minute test, so I gave her the rundown. I think she felt bad; it's not her fault, but I knew that would come up eventually. (Hearing people complain about weight when they are so thin has always been a pet peeve of mine; I'm just uber sensitive that I lost it without trying - not exactly what I was aiming for. It's sad how we focus so much on some things in live that are of so little consequence. Just being in the grocery store with my Aunt Kathy the other day, one of our nice neighbors saw us and asked how I was. I said each day was improving, and I appreciated the thoughts; I asked how she was, and she complained about all the baby weight from her 6 weeks old baby - it was hard to listen to; she's incredibly beautiful - model gorgeous - but is nursing and still recovering from the baby. The weight will come off, but you can't be rail thin that soon - it's just not even healthy. You just want to tell people to be grateful for their health and to be the with baby. The daily walks and time with the kids will take it off soon enough). Ok, anyways - I derailed there.
After the EKG, my Mom and Lucy were called back in so Mom could hear what Dr. Gordon had to say. I hugged her when she came in. It's been a really long 7 weeks, and in just a few days, she's been such a highlight. I remember when I had funny pacemaker feelings back last fall, and told her I was either anxious or pregnant. She was the one that ordered my blood work, and called me late on a Friday night to tell me I was pregnant. She was thrilled to do that as a cardiologist. She's that kind of lady; I am so grateful to have her as a friend and doctor.
She said she read the original Echo, and wasn't even sure where the 25-30 refraction rates came from. She really was interested in speaking to the cardiologist who called with the report on Thursday night. She also said the allergist, Dr. Saltoun, had called, and confirmed it was ok to speak with her. She said she would ask her about the Flu Shot and the best time to do (she's like me - we want to do it, but don't want anything else in my body right now).
She only wished I had called her sooner (I don't take the call the doctor on the cell phone thing lightly, but am glad I got confirmation I did the right thing). She said with the diet, she was amazed I had no swelling and looked/sounded great. The Mugga test showed a 65 refreaction rate, which is an exact measurement. She wanted me off the beta blockers ASAP today; no sense in being on more than I needed. She asked if I felt unusually tired (I had thought that even with 3 good nights sleep), and when I confirmed, she said this beta blocker did that, so it might make the mornings better. Yea! She asked about the palpitations, and I mentioned I really only noticed them when I had 4 nights/days of literally no sleep, and at times in the mornings when I would take the prednisone. She said both would cause it and it wasn't anything to be concerned with. It'll probably get better as I come down of the prednisone. We talked about a lot of things. She said should would keep a standing order for Zanax and Ambien in my chart, and renew it yearly, in case this ever happens again so I don't have the hassles (or her being out of town whenever I have an emergency - never fails). She went through and updated my MyChart information (it's an online program + iPhone app that keeps track of all my medical records, test results, etc), she ordered a weekly blood lab (I've been trying to get someone to do that for weeks) as she wanted to be sure my nutrients were in order for magnesium and potassium and she ordered it for at least 8 months to get through the food trials. She added in regular blood, plus the eosinophil counts, and she would monitor it for me. What a relief to have someone take some responsibility. I would see her again in 2-3 months, unless any of the blood work came back and she would need to notify me. What a relief. All was OK. She also mentioned that her daughter Hannah turned 13 and was training to be a babysitter. Dr. Gordon live literally 5 minutes from me, and since she has 2 daughters, it might work out great. Just having an extra hand on the weekends is great for Adam and I to do projects - Christmas Lights, yardwork, etc. Eventually, when the kids get familiar with someone, I'll feel even better to get out and go on a datenight. What a blessing to here more help is around.
After meeting with Dr. Gordon, we did a pacemaker test, and again, everything looked like normal. Ventricle paced at 100%; Atrium at 20%. Battery live 2.5 years left remaining, until I get the super cool upgrade that has a wireless connection to the doctor to send pacemaker checks in nightly (I have one that has a phone dial-in now, and it's a pain with VOIP and finding a dang phone that has an old ear and mouthpiece). Another normal test, and all was confirmed good.
We then went to the lab do get the blood work done, and left. We got home after 4:30. Lucy was fussy the way home, as she hadn't slept almost all day. I fed her, and "pillowtop" Grandpa rocked her to sleep. Mom went up to sleep, and Drew and Grandpa are now watching YouTube videos and drinking milk downstairs. Drew/Lucy/Adam all are sick with colds, so it's nice having Mom and Dad around to care for the kids and ensure they are ok. I think Dad may have brought something home from their North Carolina trip. Thankfully, I've been feeling good (but I've been washing my hands and avoiding touching my fast like the plague - I don't want anything else to happen).
Adam should be here in a few minutes to pick up us "kids" from daycare and bring us home. It's been a long day; these doctor visits and moving so much is exhausting for me, but I can tell I regain strength every day. Kathleen took Reeses today for a doggy play date, and will drop him off later this evening. Everyone is well cared for. It was a tiring, but all in all good day. I'm drinking my 6th juice box now. My goal is 7 for today.
Thank God for good spouces, parents, friends and one amazing doctor.
Tuesday, October 11, 2011
Finally - great news
Saturday night, my parents came over for take-out Chinese after peregrine mass. I wanted to make it to mass, but with so little sleep and nutrition, it was too high of a goal. Aunt Kathy helped with everything around the house - the kids, cleaning, dog walking - since she arrived Friday evening. Drew was good at giving hugs and showing her his toys; Lucy continued to scream when she was held unless Adam, G&G or I was around. Must be a comfort thing for her that one of her "regulars" are in full view.
I was grateful to have someone with me and to give my parents and Adam a break. We had dinner (well I downed one of 5 juice boxes again), and helped get Drew ready for bed. I then took my night meds, had a warm shower, took my ambien and slept through the night again. The zanax and ambien did it - I love Dr Gordon. I hate meds of any kind, and she knows it, so when I ask for something, she is always on board and no I won't abuse anything.
Sunday I rested at home - I felt really groggy after the ambien and stayed in bed a while in the morning; we get up early with Lucy at about 4:45 (she doesn't sleep as well as Drew) and then I take my meds at 6 and start juice boxing by 8. They sit soooo much better than the formula. By no means yummy; but I'm getting used to it. Mom and Dad worked on projects at their house, and came over with take out Chili's around 5:30. Aunt Kathy treated us to meals while she was here; she was so kind. We didn't make it to mass Sunday either; I haven't since labor day, but am still building up strength and catching upon weeks on lost sleep - not to mention the side effects of the meds. We had a nice dinner/visit, played with Drew and Lucy, got Drew's bath and prayers done with the help of my parents, and then Mom and Dad left. We talked with Aunt Kathy until Lucy fell asleep, and went to bed around 9. I tried hard to stay up Sunday after my morning nap, and by bedtime, I was able to take a Zanax and no Ambien, shower, and sleep through most of the night again.
Lucy was up on Monday morning at her regular time, 4:45. I helped watch her as Adam got ready for work. We got both kids ready by 7, and Adam left for Grandma/Grandpa's to drop them off for the usual daycare routine. I went back to bed for a while, but kept getting interrupted by phone calls for more doctor appointments and results. I called Apria and they said another shipment of juiceboxes would arrive that day (which thankfully they did). I also worked for about 2 hours putting together a list of the timelines, symptoms, treatments, and doctors/phone numbers, so we could get the disability stuff taken care. My managers at work said they would handle it, and I wanted to provide all the information. So many weeks have gone by and so many people are involved, it's going to take the disability some leg work to do this, but they already have everything they need. I'm glad work will manage the headache that has been (I was only approved for 1 week disability, and the rep on the phone was really irritable). When you're this tired/weak/sick, that was the last thing I needed - so I turned it all over to my company to manage.
Aunt Kathy and I left at noon to head to Aurora for the Mugga Test. It was similar to a chest x-ray. They took me in back and drew blood. Then they mixed the blood with the radioactive material and waited 1/2 hour. Aunt Kathy and I had a nice visit in the waiting room talking about family and friends. I enjoy her company very much; and always turn to her and she's been there. After 1/2 hour, they took me back and reinjected the blood, and took 3 ten minute scans. Dr. Hussain, the one that called me Thursday night to tell me my heart was affected, came in a few times wanting to know the results. I wasn't sure if that was good or not, but it sounded like Dr. Gordon wanted the results while she was traveling. They finished the test, and I had an EKG, pacemaker check, and appt. with Dr. Gordon on Wednesday for followup.
Aunt Kathy and I headed back home about 3:30, stopped at Jewel to pick up a few things - I trugged through the store, but figured it was good to get some walking in, and we came home. Aunt Kathy helped get dinner ready for when my parents came over. I was grateful; totally exhausted just with the trip to the hospital and the 10 minute walk through the store. Dr. Saltoun, the allergist, called and wanted to talk about the echo as well. She said just like Dr. Gonsalves that my results, while showing my heart was impacted, didn't look typical of EoG. I told her I was following up with my regular cardiologist. We then discussed that the juice boxes were doing well, and that I would see her again 3 weeks post getting off the steroids to start allergy testing again. I'm actually pretty impressed at how often I hear directly from the doctors lately.
I then visited with Aunt Kathy until mom and dad came over with the kids (they brought the salad :)), and Adam came home shortly after. We had Italian - one of my favorites - but while it looked and smelled amazing, I can already tell the EoG fear of eating food has set in. I have no desire to taste anything, let alone want to eat anything. I think that is a good thing; it makes me just drink my juice boxes and get into a new routine.
After dinner, Adam and Dad took Drew outside to play "lawnmower". The weather has been amazing this last week. I checked my phone and missed a voicemail. Dr. Gordon had called. She said she just got the results of my Mugga Test, and it came back perfect. There was no impact to my heart. She did the "I told you not to worry" thing, and was grateful I was sleeping and there was nothing to worry about. I cried; just having that level of relief was HUGE that there wasn't something else to have to think about. Dr. Gordon is such a great doctor; she reminds me a lot of my cousin Katie. Very personable and caring. She has lupus like my mom and we share the same birthday - I knew I liked her :) So, we all celebrated that night, and I called Dr. Gordon back to thank her and let her know I'd see her Wednesday. I also called Katie to update her as well.
We had a dessert - Aunt Kathy treated us to all our meals and desserts this weekend - and watched the Sing Off. It's cute watching Drew wiggle his hips and clap after the acapella performances. We got him ready for bed with Mom and Dad help, and once Lucy was down, I took a shower and was able to sleep just with the Zanax again.
I had 6 juice boxes, had my period, off the Flagyl, my stomach felt good on the boxes, and no heart issues to worry about. It was a very good, happy evening.
Tuesday morning, my Aunt Kathy helped around the house and left for home. I was so grateful she had come. Adam dropped Drew off at Grandpa's, and Mom came over to help me with Lucy. I had a web conference with Dr. Taft, and she is working with me on the long-term plan as well as how to manage the anxiety of all the changes and the food trials upcoming. It's nice she can do it via web conference, to avoid weekly trips to Northwestern. The cleaning lady came, Reeses had his mobile grooming, and Mom did laundry, cleaning, dishes, and even put the bench together that was sitting in our living room. She worked non-stop from 7-3:30, when we headed back over to Mom and Dad's. I've never been more grateful to have both of my parents nearby and so helpful through all that has happened - the childcare, overnight visits, calls, emails, dinners, rides to doctors...I can't even list everything that has happened in the last 6 weeks. I'm still amazed at how many people have prayed, made meals, given rides, send emails/calls - it's very powerful to see how God guides you through challenges and how often you can find Him in so many people and places. I'm really, very blessed for my family. Ed and Pat Jarot provided dinner tonight, and I'm sure will be thrilled to see the brownies waiting for him. I also called Cherie today to share the good new on my heart. I'm still thanking God all the time for that. I am totally relieved. Adam and I were prepared not to go to a family wedding knowing we had so much going on and a heart condition on top of it; we've been given new hope that in 3 weekends, I'll be in a much different place and may be able to accomplish getting there with my family.
Our thoughts today have turned to my brother Dave, who starts his new photo-phoresis treatment for GVHD this week. It's a long 9-month treatment, and is supposed to be very wearing. We're hoping this will help his body heal and start a wonderful road to recovery for him. Hopefully we will all have more good news to share with this new treatment.
Tomorrow, we're off to see Dr. Gordon, have an EKG and pacemaker check and confirm all is truly ok with my heart. I'll probably stop the beta blocker after that visit too - yea, one last med! Thursday and Friday will be to rest, and to drop down further on prednisone after I talk to Dr. Gonsalves on Thursday. Hopefully the worst is over, and things will continue to get better for me and the family.
As always, thanks for your continued prayers and support!
I was grateful to have someone with me and to give my parents and Adam a break. We had dinner (well I downed one of 5 juice boxes again), and helped get Drew ready for bed. I then took my night meds, had a warm shower, took my ambien and slept through the night again. The zanax and ambien did it - I love Dr Gordon. I hate meds of any kind, and she knows it, so when I ask for something, she is always on board and no I won't abuse anything.
Sunday I rested at home - I felt really groggy after the ambien and stayed in bed a while in the morning; we get up early with Lucy at about 4:45 (she doesn't sleep as well as Drew) and then I take my meds at 6 and start juice boxing by 8. They sit soooo much better than the formula. By no means yummy; but I'm getting used to it. Mom and Dad worked on projects at their house, and came over with take out Chili's around 5:30. Aunt Kathy treated us to meals while she was here; she was so kind. We didn't make it to mass Sunday either; I haven't since labor day, but am still building up strength and catching upon weeks on lost sleep - not to mention the side effects of the meds. We had a nice dinner/visit, played with Drew and Lucy, got Drew's bath and prayers done with the help of my parents, and then Mom and Dad left. We talked with Aunt Kathy until Lucy fell asleep, and went to bed around 9. I tried hard to stay up Sunday after my morning nap, and by bedtime, I was able to take a Zanax and no Ambien, shower, and sleep through most of the night again.
Lucy was up on Monday morning at her regular time, 4:45. I helped watch her as Adam got ready for work. We got both kids ready by 7, and Adam left for Grandma/Grandpa's to drop them off for the usual daycare routine. I went back to bed for a while, but kept getting interrupted by phone calls for more doctor appointments and results. I called Apria and they said another shipment of juiceboxes would arrive that day (which thankfully they did). I also worked for about 2 hours putting together a list of the timelines, symptoms, treatments, and doctors/phone numbers, so we could get the disability stuff taken care. My managers at work said they would handle it, and I wanted to provide all the information. So many weeks have gone by and so many people are involved, it's going to take the disability some leg work to do this, but they already have everything they need. I'm glad work will manage the headache that has been (I was only approved for 1 week disability, and the rep on the phone was really irritable). When you're this tired/weak/sick, that was the last thing I needed - so I turned it all over to my company to manage.
Aunt Kathy and I left at noon to head to Aurora for the Mugga Test. It was similar to a chest x-ray. They took me in back and drew blood. Then they mixed the blood with the radioactive material and waited 1/2 hour. Aunt Kathy and I had a nice visit in the waiting room talking about family and friends. I enjoy her company very much; and always turn to her and she's been there. After 1/2 hour, they took me back and reinjected the blood, and took 3 ten minute scans. Dr. Hussain, the one that called me Thursday night to tell me my heart was affected, came in a few times wanting to know the results. I wasn't sure if that was good or not, but it sounded like Dr. Gordon wanted the results while she was traveling. They finished the test, and I had an EKG, pacemaker check, and appt. with Dr. Gordon on Wednesday for followup.
Aunt Kathy and I headed back home about 3:30, stopped at Jewel to pick up a few things - I trugged through the store, but figured it was good to get some walking in, and we came home. Aunt Kathy helped get dinner ready for when my parents came over. I was grateful; totally exhausted just with the trip to the hospital and the 10 minute walk through the store. Dr. Saltoun, the allergist, called and wanted to talk about the echo as well. She said just like Dr. Gonsalves that my results, while showing my heart was impacted, didn't look typical of EoG. I told her I was following up with my regular cardiologist. We then discussed that the juice boxes were doing well, and that I would see her again 3 weeks post getting off the steroids to start allergy testing again. I'm actually pretty impressed at how often I hear directly from the doctors lately.
I then visited with Aunt Kathy until mom and dad came over with the kids (they brought the salad :)), and Adam came home shortly after. We had Italian - one of my favorites - but while it looked and smelled amazing, I can already tell the EoG fear of eating food has set in. I have no desire to taste anything, let alone want to eat anything. I think that is a good thing; it makes me just drink my juice boxes and get into a new routine.
After dinner, Adam and Dad took Drew outside to play "lawnmower". The weather has been amazing this last week. I checked my phone and missed a voicemail. Dr. Gordon had called. She said she just got the results of my Mugga Test, and it came back perfect. There was no impact to my heart. She did the "I told you not to worry" thing, and was grateful I was sleeping and there was nothing to worry about. I cried; just having that level of relief was HUGE that there wasn't something else to have to think about. Dr. Gordon is such a great doctor; she reminds me a lot of my cousin Katie. Very personable and caring. She has lupus like my mom and we share the same birthday - I knew I liked her :) So, we all celebrated that night, and I called Dr. Gordon back to thank her and let her know I'd see her Wednesday. I also called Katie to update her as well.
We had a dessert - Aunt Kathy treated us to all our meals and desserts this weekend - and watched the Sing Off. It's cute watching Drew wiggle his hips and clap after the acapella performances. We got him ready for bed with Mom and Dad help, and once Lucy was down, I took a shower and was able to sleep just with the Zanax again.
I had 6 juice boxes, had my period, off the Flagyl, my stomach felt good on the boxes, and no heart issues to worry about. It was a very good, happy evening.
Tuesday morning, my Aunt Kathy helped around the house and left for home. I was so grateful she had come. Adam dropped Drew off at Grandpa's, and Mom came over to help me with Lucy. I had a web conference with Dr. Taft, and she is working with me on the long-term plan as well as how to manage the anxiety of all the changes and the food trials upcoming. It's nice she can do it via web conference, to avoid weekly trips to Northwestern. The cleaning lady came, Reeses had his mobile grooming, and Mom did laundry, cleaning, dishes, and even put the bench together that was sitting in our living room. She worked non-stop from 7-3:30, when we headed back over to Mom and Dad's. I've never been more grateful to have both of my parents nearby and so helpful through all that has happened - the childcare, overnight visits, calls, emails, dinners, rides to doctors...I can't even list everything that has happened in the last 6 weeks. I'm still amazed at how many people have prayed, made meals, given rides, send emails/calls - it's very powerful to see how God guides you through challenges and how often you can find Him in so many people and places. I'm really, very blessed for my family. Ed and Pat Jarot provided dinner tonight, and I'm sure will be thrilled to see the brownies waiting for him. I also called Cherie today to share the good new on my heart. I'm still thanking God all the time for that. I am totally relieved. Adam and I were prepared not to go to a family wedding knowing we had so much going on and a heart condition on top of it; we've been given new hope that in 3 weekends, I'll be in a much different place and may be able to accomplish getting there with my family.
Our thoughts today have turned to my brother Dave, who starts his new photo-phoresis treatment for GVHD this week. It's a long 9-month treatment, and is supposed to be very wearing. We're hoping this will help his body heal and start a wonderful road to recovery for him. Hopefully we will all have more good news to share with this new treatment.
Tomorrow, we're off to see Dr. Gordon, have an EKG and pacemaker check and confirm all is truly ok with my heart. I'll probably stop the beta blocker after that visit too - yea, one last med! Thursday and Friday will be to rest, and to drop down further on prednisone after I talk to Dr. Gonsalves on Thursday. Hopefully the worst is over, and things will continue to get better for me and the family.
As always, thanks for your continued prayers and support!
Sunday, October 9, 2011
Every day is different
Thursday night was the most difficult night for me yet. Hearing the news that my heart was affected put me in utter paranoia - why was my body doing all this and how could I get it to stop? I felt a bit better stopping work, but it still scares me why/how my body is reacting so much. My gallbladder, GI, heart - was there anything else that was wrong? I kept running through every feeling, ensuring I could still breath deeply, pee without hurting, not swelling, etc - just to ensure that all else seemed ok.
Once Adam got the kids in bed, I stayed in the guest room Thursday night. I couldn't sleep for the fourth night in a row. Not one minute. I was beyond exhausted, and ready to ask the NWMH team in the morning for something for anxiety and sleep. I had panic attacks all night, and felt best with the lights on just pacing the room. In the middle of the night, I started my period. I figure that's a good sign of my body returning to its normal state. But then within another hour, I started having diaherrea every hour on the hour. I kept forcing myself to drink fluids, but was getting worse and worst with anxiety. I prayed and prayed, and felt a very strong peacefullness come over me about 1, maybe 2am. I thought maybe I would get to sleep. Turned off the lights, and the bathroom called again. After that, I couldn't calm down. Why all this again? Was it that the nutrition was up, or was my period just aggravating my GI track like it used to? So many questions.
I got desparate, and ended up calling my cousin at 3am. I could feel my heart skipping beats, which isn't normal with a pacemaker, and I was scared. Probably all anxiety, but everyone was asleep, I didn't want to worry my parents, Adam needed his rest, and I had to talk to someone. I woke her up and she agreed I needed to see the cardiologist in the morning. I tried to relax after that and couldn't. I finally went in to wake up Adam, and we talked for about 2 hours. By then, just laying on the bed talking, I felt all strange again, and had shortness of breath, shakiness etc. I went down to take my morning meds, came back up, and just got worse. I was trembling so badly. Now, this could be due to not sleeping in 4 days/nights, and all the anxiety, but hell, I had no idea. I called my parents to come over and get the kids. When my mom got here, I felt so bad I told her to take me to Edwards ER.
So, Friday morning started off at Edwards. I was having trouble thinking/talking/breathing, so they put me on oxygen, did my vitals and bloodwork, etc. Bloodwork showed I was low in potassium again, so they gave me baby aspirin and 2 huge potassium pills. I was still having the chest pain - directly in my heart area, and feeling the skipping. They all looked and said nothing was wrong, but did another CT scan (yes, I'll be glowing in a few months). CT looked normal, and the ER doc gave me some lorazepam and potassium to go home with. I felt better but still no rest.
We got home, and Adam and I packed up to head to Northwestern. I was feeling like a zombie, with no sleep for so long. I couldn't even shower. We made it downtown, and met with the psychologist (whom I told the whole story too, and asked her for help with the anxiety, sleep, and the disability stuff). She basically said she couldn't do anything about those, but would work with Gonsalves. I'll meet with her weekly to discuss just how I'm doing and how to cope mentally. We'll do phone/web chat weekly, and in person once a month to save me trips downtown. We next met with Beth, who was happy with my progress on the juice boxes and wanted me to ramp up to 7 a day. I've done 5 the last few days, so I felt good about that. She said they placed an order for more boxes and it would come Saturday (today is Sunday), and only a really small shipment came, so something is messed up again. One more damn thing to coordinate next week. I get panicky every time something like this happens. It sometimes feels like nothing can go they way I want it to be.
On the way home, Dreyer called and scheduled a mugga (sp?) test for Monday, and a visit with Dr. Gordon, my beloved cardiologist) and a pacemaker check on Wednesday. So, everything was set to look at my heart. The nurse said the dr. wanted to call, but was in Florida at a conference, but knew what was going on.
Then Dr. Gonsalves called, and asked me to explain the echo results. Um, I don't think I'm qualified. She said she hadn't had a chance to review, but wanted to know why it was ordered, etc. I told her Dr. Saltoun the allergist wanted to do it as a precaution, and I had had it done on thursday. The results showed my refraction rate was 25-30, when it should be 40-60 as a more normal range. I mentioned that I was prescribed the Coreg beta-blocker, and she thought that was fine to take and to work with Dr. Gordon on all heart related items. She said she didn't seem to think it was related to EoG, usually the heart would constrict vs. expand (I'm not sure how she would know that without reading the results, but I knew going through Dr. Gordon was the right thing). She said she didn't want to prescribe anything for sleep or anxiety or do the disability or Adam's FMLA, that should all be done through my primary care (who I was merely keeping in the loop). So, one more thing to coordinate. I called Dr. Kellly, my primary care, and asked for a sleep aid, and they refused to give me one. I think people are being so cautious, but the lack of sleep I feel is making me worse, not better.
We got home from Northwestern, and met my Aunt Kathy after picking up the Lorazapam and Coreg Beta Blocker. I emailed her Friday morning and said I would really like an extra hand for laundry, cooking, and just being able to have help for Adam so I could go upstairs and rest. She texted me she was leaving immediately, and it was relief to know someone was coming to just be around. She came around 4ish, we ordered a pizza, and headed to my parents to see them and the kids. I went straight upstairs to bed, but of course couldn't sleep. I took the beta blocker and one of the Lorazepam from the ER, and took 1 benedryl at my parents, praying something would make me go to sleep. We went home at 7, and kissed the kids, went up to take a shower, took a second benedryl and went to bed. I think I got a few hours of sleep that night.
Saturday morning, I got up to help Adam with Lucy, and then took my morning meds. I tried to rest in teh morning, but didn't do to well, just tossed and turned. I came down for juice boxes and finished up the Flagyl antibiotics. I kept getting all anxious and by the early evening, decided to call Dr. Gordon's cell phone. I left her a message - of course - I couldn't help crying. She called back within minutes. She said she was at a conference and couldn't read the results, but said everything would be ok. And no, none of this was fair, but we would get through it. We have an echo from 1 year ago after Drew's pregnancy, and all was normal. She said all my echo's show weird refractories, just the result of the pacemaker so she wanted to look at it. She also had ordered the Mugga test so we could get an exact refractory rate - that'll be a better read and we'll know what to deal with. She said this has a 1/3 chance of getting better, 1/3 of staying the same and we manage it with beta blockers, and 1/3 of it getting worse, and we'll deal with that when we get there. She said to keep on the beta blocker, and I asked her about the lorazapam and something for sleep. She couldn't believe no one prescribed it. She ordered me Xanax (which I took with a beta-blocker when I first had my pacemaker in), and she ordered Ambian for sleep. Adam went to the 24 hour pharmacy that evening to pick it up, while my parents and Aunt Kathy ate and watched the kids. He came home, I helped with Drew's bath, then I went up to take a shower, and took an Ambien. I slept all night for the first time.
This morning, I feel like a zombie. I'm just absolutely exhausted and head back upstairs to rest - not really to sleep. My chest feels heavy, which I remember was typical of me on beta-blockers and anti-anxiety. My hands are extremely shakey and I just feel out-of-body, but I'm getting down my nutrients and staying hydrated. I'm sure the new meds will take time to get used to, but I'm on the right path I think. At least I got 8 hours of sleep after 4 days/nights of nothing. I continue to pray this upcoming week of tests go smooth. It's nice not to think about work; there is enough on my mind.
The mail came yesterday and my disability was approved for one week, so something is wrong. Aunt Kathy said she'd help me with that tomorrow to see what we need to do. It makes it hard to do all this when you're so sick. I'm finally letting go and let other people help - I can't do it all.
I'm looking forward to getting out of this groggy state, where I can stop shaking and start to feel energetic again. One day at a time. Please continue to pray that this all will heal, and my body will recover soon from all it has gone through. I drop down on prednisone again tomorrow.
Once Adam got the kids in bed, I stayed in the guest room Thursday night. I couldn't sleep for the fourth night in a row. Not one minute. I was beyond exhausted, and ready to ask the NWMH team in the morning for something for anxiety and sleep. I had panic attacks all night, and felt best with the lights on just pacing the room. In the middle of the night, I started my period. I figure that's a good sign of my body returning to its normal state. But then within another hour, I started having diaherrea every hour on the hour. I kept forcing myself to drink fluids, but was getting worse and worst with anxiety. I prayed and prayed, and felt a very strong peacefullness come over me about 1, maybe 2am. I thought maybe I would get to sleep. Turned off the lights, and the bathroom called again. After that, I couldn't calm down. Why all this again? Was it that the nutrition was up, or was my period just aggravating my GI track like it used to? So many questions.
I got desparate, and ended up calling my cousin at 3am. I could feel my heart skipping beats, which isn't normal with a pacemaker, and I was scared. Probably all anxiety, but everyone was asleep, I didn't want to worry my parents, Adam needed his rest, and I had to talk to someone. I woke her up and she agreed I needed to see the cardiologist in the morning. I tried to relax after that and couldn't. I finally went in to wake up Adam, and we talked for about 2 hours. By then, just laying on the bed talking, I felt all strange again, and had shortness of breath, shakiness etc. I went down to take my morning meds, came back up, and just got worse. I was trembling so badly. Now, this could be due to not sleeping in 4 days/nights, and all the anxiety, but hell, I had no idea. I called my parents to come over and get the kids. When my mom got here, I felt so bad I told her to take me to Edwards ER.
So, Friday morning started off at Edwards. I was having trouble thinking/talking/breathing, so they put me on oxygen, did my vitals and bloodwork, etc. Bloodwork showed I was low in potassium again, so they gave me baby aspirin and 2 huge potassium pills. I was still having the chest pain - directly in my heart area, and feeling the skipping. They all looked and said nothing was wrong, but did another CT scan (yes, I'll be glowing in a few months). CT looked normal, and the ER doc gave me some lorazepam and potassium to go home with. I felt better but still no rest.
We got home, and Adam and I packed up to head to Northwestern. I was feeling like a zombie, with no sleep for so long. I couldn't even shower. We made it downtown, and met with the psychologist (whom I told the whole story too, and asked her for help with the anxiety, sleep, and the disability stuff). She basically said she couldn't do anything about those, but would work with Gonsalves. I'll meet with her weekly to discuss just how I'm doing and how to cope mentally. We'll do phone/web chat weekly, and in person once a month to save me trips downtown. We next met with Beth, who was happy with my progress on the juice boxes and wanted me to ramp up to 7 a day. I've done 5 the last few days, so I felt good about that. She said they placed an order for more boxes and it would come Saturday (today is Sunday), and only a really small shipment came, so something is messed up again. One more damn thing to coordinate next week. I get panicky every time something like this happens. It sometimes feels like nothing can go they way I want it to be.
On the way home, Dreyer called and scheduled a mugga (sp?) test for Monday, and a visit with Dr. Gordon, my beloved cardiologist) and a pacemaker check on Wednesday. So, everything was set to look at my heart. The nurse said the dr. wanted to call, but was in Florida at a conference, but knew what was going on.
Then Dr. Gonsalves called, and asked me to explain the echo results. Um, I don't think I'm qualified. She said she hadn't had a chance to review, but wanted to know why it was ordered, etc. I told her Dr. Saltoun the allergist wanted to do it as a precaution, and I had had it done on thursday. The results showed my refraction rate was 25-30, when it should be 40-60 as a more normal range. I mentioned that I was prescribed the Coreg beta-blocker, and she thought that was fine to take and to work with Dr. Gordon on all heart related items. She said she didn't seem to think it was related to EoG, usually the heart would constrict vs. expand (I'm not sure how she would know that without reading the results, but I knew going through Dr. Gordon was the right thing). She said she didn't want to prescribe anything for sleep or anxiety or do the disability or Adam's FMLA, that should all be done through my primary care (who I was merely keeping in the loop). So, one more thing to coordinate. I called Dr. Kellly, my primary care, and asked for a sleep aid, and they refused to give me one. I think people are being so cautious, but the lack of sleep I feel is making me worse, not better.
We got home from Northwestern, and met my Aunt Kathy after picking up the Lorazapam and Coreg Beta Blocker. I emailed her Friday morning and said I would really like an extra hand for laundry, cooking, and just being able to have help for Adam so I could go upstairs and rest. She texted me she was leaving immediately, and it was relief to know someone was coming to just be around. She came around 4ish, we ordered a pizza, and headed to my parents to see them and the kids. I went straight upstairs to bed, but of course couldn't sleep. I took the beta blocker and one of the Lorazepam from the ER, and took 1 benedryl at my parents, praying something would make me go to sleep. We went home at 7, and kissed the kids, went up to take a shower, took a second benedryl and went to bed. I think I got a few hours of sleep that night.
Saturday morning, I got up to help Adam with Lucy, and then took my morning meds. I tried to rest in teh morning, but didn't do to well, just tossed and turned. I came down for juice boxes and finished up the Flagyl antibiotics. I kept getting all anxious and by the early evening, decided to call Dr. Gordon's cell phone. I left her a message - of course - I couldn't help crying. She called back within minutes. She said she was at a conference and couldn't read the results, but said everything would be ok. And no, none of this was fair, but we would get through it. We have an echo from 1 year ago after Drew's pregnancy, and all was normal. She said all my echo's show weird refractories, just the result of the pacemaker so she wanted to look at it. She also had ordered the Mugga test so we could get an exact refractory rate - that'll be a better read and we'll know what to deal with. She said this has a 1/3 chance of getting better, 1/3 of staying the same and we manage it with beta blockers, and 1/3 of it getting worse, and we'll deal with that when we get there. She said to keep on the beta blocker, and I asked her about the lorazapam and something for sleep. She couldn't believe no one prescribed it. She ordered me Xanax (which I took with a beta-blocker when I first had my pacemaker in), and she ordered Ambian for sleep. Adam went to the 24 hour pharmacy that evening to pick it up, while my parents and Aunt Kathy ate and watched the kids. He came home, I helped with Drew's bath, then I went up to take a shower, and took an Ambien. I slept all night for the first time.
This morning, I feel like a zombie. I'm just absolutely exhausted and head back upstairs to rest - not really to sleep. My chest feels heavy, which I remember was typical of me on beta-blockers and anti-anxiety. My hands are extremely shakey and I just feel out-of-body, but I'm getting down my nutrients and staying hydrated. I'm sure the new meds will take time to get used to, but I'm on the right path I think. At least I got 8 hours of sleep after 4 days/nights of nothing. I continue to pray this upcoming week of tests go smooth. It's nice not to think about work; there is enough on my mind.
The mail came yesterday and my disability was approved for one week, so something is wrong. Aunt Kathy said she'd help me with that tomorrow to see what we need to do. It makes it hard to do all this when you're so sick. I'm finally letting go and let other people help - I can't do it all.
I'm looking forward to getting out of this groggy state, where I can stop shaking and start to feel energetic again. One day at a time. Please continue to pray that this all will heal, and my body will recover soon from all it has gone through. I drop down on prednisone again tomorrow.
Thursday, October 6, 2011
When it rains, it pours...
I was actually feeling better today, really excited about getting 5 juice boxes and my gatorade down. I took the dog on a walk, and it was nice to get outside and speak with some neighbors. Everyone was very supportive and offered to help in any way, which is always nice to know.
I started making dinner around 6:30pm, and the phone rings. A cardiologist at Dreyer called to let me know my echocardiogram results - yeah, never a good sign that time of night. She said she wanted to tell me that my heart was impacted with whatever was going on. I was diagnosed with cardiomyopathy, and she mentioned something about people being from 20-60 (not sure what that number was), and I was about a 25. 60 is good. 20 is not. She told me she wanted me to see a cardiologist, and I mentioned my cardiologist Dr. Gordon. They're fitting me in the day she gets back next Thursday. The doctor who called said they want to put me on a beta blocker tomorrow, and monitor my symptoms closely. She asked if I had shortness of breath, coughing, swelling in my legs, chest pain, etc. I said no (thankfully)! My left side was feeling "numb" the last few days, but I can still feel anything to the touch and have full mobility, so it could just be a strange side effect. I checked for blood clots, and nothing hurts or is swollen, and I'm trying to move about a lot during the day - nothing major like a shower until the evening when Adam is with me, but just to get up and go to the bathroom so many times, go to the fridge to get my gatorades and juice boxes, etc. I am definitely not laying around in bed all day. The cardiologist took the name of my pharmacy, and said her nurses would call in the morning to set up my appointment with Dr. Gordon next week. She wanted to just let me know, so I didn't get the news from northwestern tomorrow when they received the faxes.
I called my parents and then called my cousin Katie (who I called me earlier today and I gave her all good news then this). Katie and I discussed the symptoms and things to look for, and I told her I really didn't seem to show signs of any of them, and I'm uber paranoid at this point. I remember my blood pressure and blood oxygen level has been great all while I was in the hospital, and I never had any swelling, so I'm focusing on these positive things. Katie helped put things in perspective that this condition could have been really bad 5 weeks ago when this started, and it's actually better now than it was. While my echo is worse than last year, it may be better than 8/31 when all this flared up badly so we don't really have a good benchmark. Good point. She also said that the treatments for this are beta-blockers - which was being prescribed, a pacemake - which I already have, and prednisone to stop the inflammation - which I've been on since 9/13. So, the anxiety dropped a few levels. Finally, that little pacemaker may be really paying off and keeping everything in shape through all this.
I'll be calling Dr. G in the morning, just to confirm going on the beta-blocker and if she wants me to see a cardiologist sooner or get any other organ testing done. Needless to say, I'm drinking my nutrition drinks, taking all my meds, drinking water to keep that bladder and kidneys in check, etc. etc. I will beat this... whatever the hell this is.
I just sent an email to the management team at my company this work, sending out my final email until further notice. It's time to just focus on one thing - my health. I'm cherishing my time with the kids and Adam more than ever, and counting all my blessings every day. Thank you for the continued prayers.
I started making dinner around 6:30pm, and the phone rings. A cardiologist at Dreyer called to let me know my echocardiogram results - yeah, never a good sign that time of night. She said she wanted to tell me that my heart was impacted with whatever was going on. I was diagnosed with cardiomyopathy, and she mentioned something about people being from 20-60 (not sure what that number was), and I was about a 25. 60 is good. 20 is not. She told me she wanted me to see a cardiologist, and I mentioned my cardiologist Dr. Gordon. They're fitting me in the day she gets back next Thursday. The doctor who called said they want to put me on a beta blocker tomorrow, and monitor my symptoms closely. She asked if I had shortness of breath, coughing, swelling in my legs, chest pain, etc. I said no (thankfully)! My left side was feeling "numb" the last few days, but I can still feel anything to the touch and have full mobility, so it could just be a strange side effect. I checked for blood clots, and nothing hurts or is swollen, and I'm trying to move about a lot during the day - nothing major like a shower until the evening when Adam is with me, but just to get up and go to the bathroom so many times, go to the fridge to get my gatorades and juice boxes, etc. I am definitely not laying around in bed all day. The cardiologist took the name of my pharmacy, and said her nurses would call in the morning to set up my appointment with Dr. Gordon next week. She wanted to just let me know, so I didn't get the news from northwestern tomorrow when they received the faxes.
I called my parents and then called my cousin Katie (who I called me earlier today and I gave her all good news then this). Katie and I discussed the symptoms and things to look for, and I told her I really didn't seem to show signs of any of them, and I'm uber paranoid at this point. I remember my blood pressure and blood oxygen level has been great all while I was in the hospital, and I never had any swelling, so I'm focusing on these positive things. Katie helped put things in perspective that this condition could have been really bad 5 weeks ago when this started, and it's actually better now than it was. While my echo is worse than last year, it may be better than 8/31 when all this flared up badly so we don't really have a good benchmark. Good point. She also said that the treatments for this are beta-blockers - which was being prescribed, a pacemake - which I already have, and prednisone to stop the inflammation - which I've been on since 9/13. So, the anxiety dropped a few levels. Finally, that little pacemaker may be really paying off and keeping everything in shape through all this.
I'll be calling Dr. G in the morning, just to confirm going on the beta-blocker and if she wants me to see a cardiologist sooner or get any other organ testing done. Needless to say, I'm drinking my nutrition drinks, taking all my meds, drinking water to keep that bladder and kidneys in check, etc. etc. I will beat this... whatever the hell this is.
I just sent an email to the management team at my company this work, sending out my final email until further notice. It's time to just focus on one thing - my health. I'm cherishing my time with the kids and Adam more than ever, and counting all my blessings every day. Thank you for the continued prayers.
More appointments...
Continuing to move through the juice boxes today, but spending way too much time in the bathroom in between dr. visits. Not sure if it's the infection still going, or if this is normal now that I'm getting good nutrients; I have a panic attack every time I run to the bathroom, wondering what is going on. I need to calm down.
I told my mom in the waiting room this morning that I looked forward to having my period. I know that sounds bizarre, but since I stopped nursing on 9/13, I've been waiting for it to return. It's a sign that my body is returning back to pre-pregnancy state, and I would think that would be a good sign.
I called my primary care doctor after the echo this morning, to check on lab results. The labs are not back yet from the samples - of course, it could be next week as "these things take time". Either way, I'm finishing up Flagyl over the weekend, and we'll see what happens. The echo and labs are all being sent to NWMH as well for analysis. I'm curious how I'll react when the Flagyl stops and when the prednisone drops a few days later. No sense in worrying about it. I tried to rest in between dr. appointments today, but my mind is so full and I'm shaking like a leaf. Wondering how much that's the steroids or just plain anxiety with all that's going on.
I had a funny feeling this week that I just wanted to make it to St. Peregrine mass this weekend. I know it's a lot to push my body to do (I can barely make it through a shower), but I actually miss going to church. There is something very comforting about faith and God and community at these times. I think like work, I'm trying to hang on to some consistency.
I just got a call from Northwestern again, and Dr. G wants me to meet with Beth ASAP to go over the nutrition changes and the reactions. She also wants me to meet Dr. Taft, who is the clinical psychologist on chronic eosinophilic GI disorders, as she's concerned about me working and balancing all the symptoms and major changes (oh yeah, and two small kids and finances, etc). Especially with my current condition and what could potentially happen as I get into remission and relapse again, they want to give me the right treatment. I was grateful to Beth yesterday for helping coordinate things with me. It's disappointing to be such a rare case with so few answers of what is to come, but I'm glad everyone seems to know me and be working together at Northwestern to help and I'm grateful to get some confirmation that this is not abnormal and my treatment will not be "easy". It's amazing all of this treatment is covered under the EoG program - the dieticians, psychologists, formula, specialists, etc. Everything is filed under this eosinophilic disorder, so it gets special insurance treatment. Sweet! So far, the bills have been reflective of that, which I'm grateful for. We already maxed out our out-of-pocket fees for me with Lucy and all the complications during the pregnancy, so hopefully we won't get hit with anything major as we work through this. I guess even if we do, we have to do whatever it takes to get my body back on track. I still think back to 6 weeks ago - this stuff seems surreal to even have dreamed up back then.
Adam is planning to come with tomorrow, which I'm grateful for. I know it's a lot of time off work, but I really need him right now. It's good for us both to prepare on how to deal with these daily issues, my "paranoia", and the long road to recovery ahead (and the potential that we may never know the answer, that this may be autoimmune vs. allergy, that we may see relapses often or never again, etc). The kids will again stay with my parents to help with consistency, and little Reeses is going to spend the day with his puppy friends at Kathleen's until we get back tomorrow afternoon/evening. Friday's out of the city are always fun. I feel bad not driving, but I'm smart enough to not try with the way I feel. I think even as a light-weight, I do better with a glass of wine than all the stuff in my system right now.
Kathleen even picked up my dr ycleaning yesterday; I'm so grateful for all the people helping us out. I got a nice call from Pat Jarot today, and called her back and got to talk to her husband Ed for an hour. It's a joy to be surrounded with positive people that help me stayed focused on all the good things. What a blessing for so many special people in our lives!
I saw a quote from Steve Jobs today, that really struck home with me. While I'm not fighting cancer, I am fighting a chronic illness that raises so many questions on what the heck your body is doing and how much we can't control in our lives. I think this is truly inspirational, and a good way to focus each day.
Well said Steve, well said.
I told my mom in the waiting room this morning that I looked forward to having my period. I know that sounds bizarre, but since I stopped nursing on 9/13, I've been waiting for it to return. It's a sign that my body is returning back to pre-pregnancy state, and I would think that would be a good sign.
I called my primary care doctor after the echo this morning, to check on lab results. The labs are not back yet from the samples - of course, it could be next week as "these things take time". Either way, I'm finishing up Flagyl over the weekend, and we'll see what happens. The echo and labs are all being sent to NWMH as well for analysis. I'm curious how I'll react when the Flagyl stops and when the prednisone drops a few days later. No sense in worrying about it. I tried to rest in between dr. appointments today, but my mind is so full and I'm shaking like a leaf. Wondering how much that's the steroids or just plain anxiety with all that's going on.
I had a funny feeling this week that I just wanted to make it to St. Peregrine mass this weekend. I know it's a lot to push my body to do (I can barely make it through a shower), but I actually miss going to church. There is something very comforting about faith and God and community at these times. I think like work, I'm trying to hang on to some consistency.
I just got a call from Northwestern again, and Dr. G wants me to meet with Beth ASAP to go over the nutrition changes and the reactions. She also wants me to meet Dr. Taft, who is the clinical psychologist on chronic eosinophilic GI disorders, as she's concerned about me working and balancing all the symptoms and major changes (oh yeah, and two small kids and finances, etc). Especially with my current condition and what could potentially happen as I get into remission and relapse again, they want to give me the right treatment. I was grateful to Beth yesterday for helping coordinate things with me. It's disappointing to be such a rare case with so few answers of what is to come, but I'm glad everyone seems to know me and be working together at Northwestern to help and I'm grateful to get some confirmation that this is not abnormal and my treatment will not be "easy". It's amazing all of this treatment is covered under the EoG program - the dieticians, psychologists, formula, specialists, etc. Everything is filed under this eosinophilic disorder, so it gets special insurance treatment. Sweet! So far, the bills have been reflective of that, which I'm grateful for. We already maxed out our out-of-pocket fees for me with Lucy and all the complications during the pregnancy, so hopefully we won't get hit with anything major as we work through this. I guess even if we do, we have to do whatever it takes to get my body back on track. I still think back to 6 weeks ago - this stuff seems surreal to even have dreamed up back then.
Adam is planning to come with tomorrow, which I'm grateful for. I know it's a lot of time off work, but I really need him right now. It's good for us both to prepare on how to deal with these daily issues, my "paranoia", and the long road to recovery ahead (and the potential that we may never know the answer, that this may be autoimmune vs. allergy, that we may see relapses often or never again, etc). The kids will again stay with my parents to help with consistency, and little Reeses is going to spend the day with his puppy friends at Kathleen's until we get back tomorrow afternoon/evening. Friday's out of the city are always fun. I feel bad not driving, but I'm smart enough to not try with the way I feel. I think even as a light-weight, I do better with a glass of wine than all the stuff in my system right now.
Kathleen even picked up my dr ycleaning yesterday; I'm so grateful for all the people helping us out. I got a nice call from Pat Jarot today, and called her back and got to talk to her husband Ed for an hour. It's a joy to be surrounded with positive people that help me stayed focused on all the good things. What a blessing for so many special people in our lives!
I saw a quote from Steve Jobs today, that really struck home with me. While I'm not fighting cancer, I am fighting a chronic illness that raises so many questions on what the heck your body is doing and how much we can't control in our lives. I think this is truly inspirational, and a good way to focus each day.
"If you live each day as if it was your last, someday you'll most certainly be right. It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: 'If today were the last day of my life, would I want to do what I am about to do today?' And whenever the answer has been no for too many days in a row, I know I need to change something.
Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because death is very likely the single best invention of life. It is life’s change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true. Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma -- which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary."
Well said Steve, well said.
Finally some nutrition...
Wednesday I received a whole bunch of new samples to test to see if I could get formula and some juice boxes made by Neocate down. I am happy to report that I got 5 boxes down yesterday, with no burning. That's about 240 calories a box, so I was pretty proud of myself. I had acid reflux all last night; I think I drank the last box a little too late in the day. I should be an expert on this stuff when I'm done. :)
I was able to speak with the nutritionist, Beth, yesterday, and told her everything that I experienced since Friday (she's only available Wed-Fri). I really like her, and she was totally understanding. She said the reaction wasn't necessarily a surprise; she had a few other patients that had a bad reaction to the EleCare. She wasn't sure if my inflammation just can't handle the viscosity of the formula at this point (and as I ramped up, my body just started rejecting it), or if was a cross contamination with the latest shipment. Either way, she was grateful to hear from me and we discussed some different options for getting the nutrition in. She wanted me to test the juice boxes and the Neocate Chocolate and give her feedback so we could place a different order. She also said she would help coordinate any disability I needed, as my condition warranted time off work as I was still under major medications and the disease was definitely not under control and I am reacting to nearly everything in my system. She said this is definitely not unusual, and confirmed that I did the right things and contacted the right people. (I think mentally that made me feel better).
I got down a juice box this morning, and a sample of the Neocate Chocolate. I think my mouth is just plain irritated with all the stuff going down, so I feel a little more at ease that this doesn't seem like an allergic reaction. I do think the juice boxes are better able to sit in my stomach, so that may be the best approach at this time. Maybe when I'm feeling better, I'll do the mazes and search word puzzles and matching games on the back of the juice boxes :) This stuff is all for kids that suffer from EoE. It works for me in my small group of EoG patients. Makes me feel like a little kid drinking a little juice box every few hours. It's amazing how perspective can change - these boxes tasted horrible in the hospital, but after so much sweet stuff and the EleCare Vanilla being so strong and the unflavored making me vomit, this doesn't seem so bad. I don't need the lifesaver in my mouth to mask the taste with two flavors; things are getting better and my body seems to be adjusting.
I haven't slept now for 3 nights - I just lay in bed tossing and turning; completely paranoid of every symptom I feel. Weird tingles, numbness, heart palpitations, etc. I'm sure some things are probably just anxiety with trying to get my health under control. I did some work yesterday, and burned out really fast. I think I just have to be more firm and say no to doing anything. I know everyone says I should, but giving that up personally is difficult. I've given up a lot the last month, and am reaching hard to hold on to some consistency. However, I know the alternative of pushing too hard is not good, and I need to stay focused on that.
My goal for today is just to keep hydrated, try to sleep/rest, and get those nutrients in. I'll call Beth back in a bit to get an order placed for more quantity. Mom took Lucy and I this morning to get my echocardiogram done of my heart. Some EoG patients have an autoimmune response (not allergies), and it can attack the organs. The doctors want to be conservative and check everything out, which I'm grateful for. Hopefully we'll know the results of the test later tomorrow or Monday.
The Flagyl will be done by end of day Saturday (hopefully the infection will be gone), and the prenidsone will drop again next Monday. It was supposed to be the same day, but I'm going to stay on the 40mg an extra 2 days, so I don't have 2 major changes in the same day. One thing at a time... I'm hopeful some of these weird symptoms will go away, I can build up my nutrition, and start feeling better soon!
I was able to speak with the nutritionist, Beth, yesterday, and told her everything that I experienced since Friday (she's only available Wed-Fri). I really like her, and she was totally understanding. She said the reaction wasn't necessarily a surprise; she had a few other patients that had a bad reaction to the EleCare. She wasn't sure if my inflammation just can't handle the viscosity of the formula at this point (and as I ramped up, my body just started rejecting it), or if was a cross contamination with the latest shipment. Either way, she was grateful to hear from me and we discussed some different options for getting the nutrition in. She wanted me to test the juice boxes and the Neocate Chocolate and give her feedback so we could place a different order. She also said she would help coordinate any disability I needed, as my condition warranted time off work as I was still under major medications and the disease was definitely not under control and I am reacting to nearly everything in my system. She said this is definitely not unusual, and confirmed that I did the right things and contacted the right people. (I think mentally that made me feel better).
I got down a juice box this morning, and a sample of the Neocate Chocolate. I think my mouth is just plain irritated with all the stuff going down, so I feel a little more at ease that this doesn't seem like an allergic reaction. I do think the juice boxes are better able to sit in my stomach, so that may be the best approach at this time. Maybe when I'm feeling better, I'll do the mazes and search word puzzles and matching games on the back of the juice boxes :) This stuff is all for kids that suffer from EoE. It works for me in my small group of EoG patients. Makes me feel like a little kid drinking a little juice box every few hours. It's amazing how perspective can change - these boxes tasted horrible in the hospital, but after so much sweet stuff and the EleCare Vanilla being so strong and the unflavored making me vomit, this doesn't seem so bad. I don't need the lifesaver in my mouth to mask the taste with two flavors; things are getting better and my body seems to be adjusting.
I haven't slept now for 3 nights - I just lay in bed tossing and turning; completely paranoid of every symptom I feel. Weird tingles, numbness, heart palpitations, etc. I'm sure some things are probably just anxiety with trying to get my health under control. I did some work yesterday, and burned out really fast. I think I just have to be more firm and say no to doing anything. I know everyone says I should, but giving that up personally is difficult. I've given up a lot the last month, and am reaching hard to hold on to some consistency. However, I know the alternative of pushing too hard is not good, and I need to stay focused on that.
My goal for today is just to keep hydrated, try to sleep/rest, and get those nutrients in. I'll call Beth back in a bit to get an order placed for more quantity. Mom took Lucy and I this morning to get my echocardiogram done of my heart. Some EoG patients have an autoimmune response (not allergies), and it can attack the organs. The doctors want to be conservative and check everything out, which I'm grateful for. Hopefully we'll know the results of the test later tomorrow or Monday.
The Flagyl will be done by end of day Saturday (hopefully the infection will be gone), and the prenidsone will drop again next Monday. It was supposed to be the same day, but I'm going to stay on the 40mg an extra 2 days, so I don't have 2 major changes in the same day. One thing at a time... I'm hopeful some of these weird symptoms will go away, I can build up my nutrition, and start feeling better soon!
Tuesday, October 4, 2011
Tuesday, 10/4
Monday showed no signs of improvement over the previous day. Mrs. Wols came to help with the kids. I hadn't slept well with Lucy getting up at night, and with all the steroids. Lucy was teething and uber fussy, and Drew was clingly and crabby. They obviously are aware of changes in the routine too, and really wanted their mommy. It was really wearing on me, but I tried to rest and have Mrs. Wols help out anywhere I could think. I was grateful to have the help, as I couldn't have done it on my own.
I spoke with the nurse at Dr. Gonsalves' office, and they spoke with Dr. G. Basically, they wanted to try a competitor brand formula, but before that, do some allergy testing to ensure I wasn't reacting to the formula. If I did react to the formula, they wanted me to be tested for things like apples and grapes, and potentially add those solid foods into my diet. Maybe things like mashed potatoes too. HUH???? Doesn't this defeat everything we're trying to do to get me into remission? I thought the goal was the elemental diet and the steroids; every day, new story.
I questioned the sucrafate stopping, the drop in prenisone, and the cromolyn, and asked if I could be moved back to where things were last Friday. It took all day, but Dr. G called me back late Monday afternoon. She didn't want me to try new formulas if there was a reaction, and wanted me to do an oral challenge and to set something up with Dr. Saltoun, to see if I was reacting to the formula. She didn't think it was a reaction to the meds, but we're staying on 40mg of prednisone (Friday I dropped from 60 to 40mg), I started up the sucrafate again, and stopped the cromolyn. I mentioned Dr. S didn't want to do allergy testing, as my results were so odd from before. I couldn't imagine I was reacting now, after a week of formula. While I wasn't getting the quantity goal in, at least it was ok before. The tingling and burning in my mouth and esophagus were too much to bear. I left a message with Dr. S for next steps.
So, I just focused on getting the liquids in on Monday. Monday night, I took my flagyl (I can't wait until that is done), and then tried just 4 oz of formula, sipping it really slowly. It burned. And I felt all tingling in my mouth again. I took an Alavert and tried to calm myself down. I could tell I was anxious. I didn't sleep at all Monday night.
Tuesday morning, I asked Adam to stay home to help Mrs. Wols. I was so tired and weak, and I knew my parents would be home from their trip to NC by noon. Adam was great, allowing me to rest upstairs and make my phone calls. Dr. S called 3 times personally today. She worked with me and our Apria rep (yeah, had to coordinate that crap again), to get me some new samples, using Neocate vs. EloCare. She didn't think I had an allergic reaction, and didn't feel the need to do the oral challenge, but to keep her posted and try one at a time to see how it goes. I'm starting to feel like I'm becoming "that patient", but I have no idea what's going on, and I tried to be as nice and friendly as I could on the phone as they worked with me on what to do next.
I took my tums around 11am, and a light bulb went on - I started taking those calcium supplements on Friday too. I felt all tingly again with those, and read the ingredient label - made with milk. Holy cripes. So, I'm going to switch to caltrate, and maybe that'll help things along too. So many things to keep track of; it's exhausting for someone in this condition. I need a secretary.
Unum called and wanted more information on the short term disability claim. We've been treated by so many people, it's been chaotic. I'm hoping I can keep coordinating that and get everything that's needed.
Apria screwed up the order, and says it will come tomorrow, which I just found out this evening. Always something. I guess what's another day at this point? It's unfortunate things can take so long. So, we try again in the morning with some more samples and hopefully something will click. If so, I can get the nutrients back in and keep on track. I'm literally counting down the days until I'm off Flagyl (end of day Saturday is the last pill), and see how my insides feel with that gone. I was able to do several lab samples today, which Adam dropped off for me.
My parents came over for lunch - heading here straight from the airport, and Drew was as happy as a clam. Just all smiles and hugs, and Lucy just cooed at my mom (until the fussiness from the teething kicked in). I'm hoping we can get back to the routine again this week, and I can focus on getting rest and getting some nutrients in.
Tomorrow is another day. I'm eager to try to some new samples and get back on the road to health. My goal is to find something that works, and get a new prescription in. I'm so done with this. I continue to pray, and thank God just for every day at this point. Last night was scary, just not knowing why my insides are so uncomfortable, the formula doesn't sit, my body getting weaker, the mental unfocus, and more. It's a lot to handle physically when you're weak, plus with 2 small kids and a husband that really needs to go back to work.
I spoke with my employer today, and I think we're going to go on long-term disability. I'm unable to drive, focus, and do my work with all the medicines I'm on, and trying to get nutrients in me. I can't be relied on, which isn't good for business. I just don't know what each day will bring, let alone how I'll feel each week with a prednisone drop and eventual introduction of foods (which could cause relapse). So many unknowns. While it's a major hit to my ego and our finances, I think it's probably the best decision. Every hour of every day is different - sometimes I feel good and other times I feel so weak and wobbly that my head will roll over my shoulders. We never thought we'd encounter all this when we decided to pay off the van last month, thinking medical bills were done for the year now that Lucy was here.
I'm still living in hope that this is all post-partum stuff and it will automagically disappear in a few weeks. We'll never find anything I'm allergic too, never have a reason why, but I'll go into remission and all will turn out. It would be frustrating, but a blessing. It wouldn't be a surprise after all the infections and antibiotics and shingles and migraines - Lucy's pregnancy was no means easy. And I think we have a clear confirmation from God not to have any more kids; we can't take any more and we got one of each which is what we had always hoped for. We can't risk not having mommy in the picture. Adam's ready to have surgery now!
I spoke with the nurse at Dr. Gonsalves' office, and they spoke with Dr. G. Basically, they wanted to try a competitor brand formula, but before that, do some allergy testing to ensure I wasn't reacting to the formula. If I did react to the formula, they wanted me to be tested for things like apples and grapes, and potentially add those solid foods into my diet. Maybe things like mashed potatoes too. HUH???? Doesn't this defeat everything we're trying to do to get me into remission? I thought the goal was the elemental diet and the steroids; every day, new story.
I questioned the sucrafate stopping, the drop in prenisone, and the cromolyn, and asked if I could be moved back to where things were last Friday. It took all day, but Dr. G called me back late Monday afternoon. She didn't want me to try new formulas if there was a reaction, and wanted me to do an oral challenge and to set something up with Dr. Saltoun, to see if I was reacting to the formula. She didn't think it was a reaction to the meds, but we're staying on 40mg of prednisone (Friday I dropped from 60 to 40mg), I started up the sucrafate again, and stopped the cromolyn. I mentioned Dr. S didn't want to do allergy testing, as my results were so odd from before. I couldn't imagine I was reacting now, after a week of formula. While I wasn't getting the quantity goal in, at least it was ok before. The tingling and burning in my mouth and esophagus were too much to bear. I left a message with Dr. S for next steps.
So, I just focused on getting the liquids in on Monday. Monday night, I took my flagyl (I can't wait until that is done), and then tried just 4 oz of formula, sipping it really slowly. It burned. And I felt all tingling in my mouth again. I took an Alavert and tried to calm myself down. I could tell I was anxious. I didn't sleep at all Monday night.
Tuesday morning, I asked Adam to stay home to help Mrs. Wols. I was so tired and weak, and I knew my parents would be home from their trip to NC by noon. Adam was great, allowing me to rest upstairs and make my phone calls. Dr. S called 3 times personally today. She worked with me and our Apria rep (yeah, had to coordinate that crap again), to get me some new samples, using Neocate vs. EloCare. She didn't think I had an allergic reaction, and didn't feel the need to do the oral challenge, but to keep her posted and try one at a time to see how it goes. I'm starting to feel like I'm becoming "that patient", but I have no idea what's going on, and I tried to be as nice and friendly as I could on the phone as they worked with me on what to do next.
I took my tums around 11am, and a light bulb went on - I started taking those calcium supplements on Friday too. I felt all tingly again with those, and read the ingredient label - made with milk. Holy cripes. So, I'm going to switch to caltrate, and maybe that'll help things along too. So many things to keep track of; it's exhausting for someone in this condition. I need a secretary.
Unum called and wanted more information on the short term disability claim. We've been treated by so many people, it's been chaotic. I'm hoping I can keep coordinating that and get everything that's needed.
Apria screwed up the order, and says it will come tomorrow, which I just found out this evening. Always something. I guess what's another day at this point? It's unfortunate things can take so long. So, we try again in the morning with some more samples and hopefully something will click. If so, I can get the nutrients back in and keep on track. I'm literally counting down the days until I'm off Flagyl (end of day Saturday is the last pill), and see how my insides feel with that gone. I was able to do several lab samples today, which Adam dropped off for me.
My parents came over for lunch - heading here straight from the airport, and Drew was as happy as a clam. Just all smiles and hugs, and Lucy just cooed at my mom (until the fussiness from the teething kicked in). I'm hoping we can get back to the routine again this week, and I can focus on getting rest and getting some nutrients in.
Tomorrow is another day. I'm eager to try to some new samples and get back on the road to health. My goal is to find something that works, and get a new prescription in. I'm so done with this. I continue to pray, and thank God just for every day at this point. Last night was scary, just not knowing why my insides are so uncomfortable, the formula doesn't sit, my body getting weaker, the mental unfocus, and more. It's a lot to handle physically when you're weak, plus with 2 small kids and a husband that really needs to go back to work.
I spoke with my employer today, and I think we're going to go on long-term disability. I'm unable to drive, focus, and do my work with all the medicines I'm on, and trying to get nutrients in me. I can't be relied on, which isn't good for business. I just don't know what each day will bring, let alone how I'll feel each week with a prednisone drop and eventual introduction of foods (which could cause relapse). So many unknowns. While it's a major hit to my ego and our finances, I think it's probably the best decision. Every hour of every day is different - sometimes I feel good and other times I feel so weak and wobbly that my head will roll over my shoulders. We never thought we'd encounter all this when we decided to pay off the van last month, thinking medical bills were done for the year now that Lucy was here.
I'm still living in hope that this is all post-partum stuff and it will automagically disappear in a few weeks. We'll never find anything I'm allergic too, never have a reason why, but I'll go into remission and all will turn out. It would be frustrating, but a blessing. It wouldn't be a surprise after all the infections and antibiotics and shingles and migraines - Lucy's pregnancy was no means easy. And I think we have a clear confirmation from God not to have any more kids; we can't take any more and we got one of each which is what we had always hoped for. We can't risk not having mommy in the picture. Adam's ready to have surgery now!
Monday, October 3, 2011
Sunday, 10/5
While I'm not in pain, my symptoms seem to be worsening,
and I ended up calling the doctor today.
On Friday, I dropped my predisone 20 mg, down to 40 mg. I also stopped the Sucrafate and started the Cromolyn sodium (to stop the eosinophils from bursting). This was per Dr. Gonsalves' instructions. That day, I started having trouble digesting the formula. I did about 36 oz of formula and 1 juice box sample (about 8 oz). It took all evening to get rid of the allergic reaction (tingling in the mouth and tongue) that occurred from the allergy testing that day, which was inconclusive but showed a reaction for every food group. On a good note however, my blood work showed that the eosinophils are gone (not likely from my GI tissue, but it's still a good sign).
On Saturday, I spent the day at home, and again, the burning from the formula made it so I could only get the same formula and one juice box down again. It feels like I'm swallowing a fire ball, then it sits in my stomach, and regurgitates for hours. I called my primary care doctor, who ordered another sample to monitor to the c-diff. Unfortunately or fortunately, it was easy to get another sample, as every time I take the Flagyl, I end up ill and in the bathroom again. Last night, I tried my typical italian ice, and within minutes, I had an allergic reaction. It was strawberry - but it was the 3rd time I've had it this week, and this was the first time I had a reaction. It felt exactly like when I had the allergy testing done. I took an Alavert, just like they gave me at the allergist office, and the symptoms didn't go away until overnight. I seem to be starting to react to anything at this point; I'm not doing Italian Ice anymore.
Today, I took my pills, and waited about 3 hours before trying the formula. After two sips of formula, I felt like my esophogus was on fire. Within minutes - back to the bathroom. I called Dr. G's office and left a message; the on-call doctor said she wasn't qualified to decide what to do on my case, but to stay with liquids only today and call again tomorrow. I will call again in the morning, as I have to get the nutrients in some way. Putting something in me that is making my symptoms worse seems just completely dumb at this point; things are obviously too inflamed to handle this too. I've been able to get down 2 gatorades, 1 jello cup, and am starting on ginger ale. However, with each Flagyl I take, I end up back in bathroom. My tongue is still tingling, so I'm going to continue to take the Alavert as a precaution. It could be a reaction to the Cromolyn - it's just too hard to know at this point what I'm reacting to.
Tomorrow and Tuesday, Mrs. Wols is coming to help me with Drew/Lucy while Adam goes to work. (He's taken off over 2 weeks already, and HR has questioned his time off. If my health continues to be this up in the air, we'll probably file FMLA so he's protected in taking more time off.) I'm very weak and shaky, so I'll be grateful to have someone here - even to monitor me at this point.
I will place a call into Dr. G first thing. I'm not sure what's next if I can't get the formula down; I'd be willing to do a feeding tube or anything at this point - I'm ready to move forward and get better!! We'll probably pack up the car and head to the lab in the morning to drop off the samples, then just stay at home and be with the kids until we hear from the doctor to figure out what's next and what we need to do.
Cherie came by with food for the family in the freezer. She's offered to drive me downtown if needed, if Dr. G wants to see me tomorrow or Tuesday.
I'll keep everyone posted with the news we get in the morning, and if we need to head back downtown. I'm guessing they'll ramp me back up on prednisone, but there is no way to tell. I'm also not sure what will happen if I can't get the formula down. Hopefully we'll know more in the morning.
On Friday, I dropped my predisone 20 mg, down to 40 mg. I also stopped the Sucrafate and started the Cromolyn sodium (to stop the eosinophils from bursting). This was per Dr. Gonsalves' instructions. That day, I started having trouble digesting the formula. I did about 36 oz of formula and 1 juice box sample (about 8 oz). It took all evening to get rid of the allergic reaction (tingling in the mouth and tongue) that occurred from the allergy testing that day, which was inconclusive but showed a reaction for every food group. On a good note however, my blood work showed that the eosinophils are gone (not likely from my GI tissue, but it's still a good sign).
On Saturday, I spent the day at home, and again, the burning from the formula made it so I could only get the same formula and one juice box down again. It feels like I'm swallowing a fire ball, then it sits in my stomach, and regurgitates for hours. I called my primary care doctor, who ordered another sample to monitor to the c-diff. Unfortunately or fortunately, it was easy to get another sample, as every time I take the Flagyl, I end up ill and in the bathroom again. Last night, I tried my typical italian ice, and within minutes, I had an allergic reaction. It was strawberry - but it was the 3rd time I've had it this week, and this was the first time I had a reaction. It felt exactly like when I had the allergy testing done. I took an Alavert, just like they gave me at the allergist office, and the symptoms didn't go away until overnight. I seem to be starting to react to anything at this point; I'm not doing Italian Ice anymore.
Today, I took my pills, and waited about 3 hours before trying the formula. After two sips of formula, I felt like my esophogus was on fire. Within minutes - back to the bathroom. I called Dr. G's office and left a message; the on-call doctor said she wasn't qualified to decide what to do on my case, but to stay with liquids only today and call again tomorrow. I will call again in the morning, as I have to get the nutrients in some way. Putting something in me that is making my symptoms worse seems just completely dumb at this point; things are obviously too inflamed to handle this too. I've been able to get down 2 gatorades, 1 jello cup, and am starting on ginger ale. However, with each Flagyl I take, I end up back in bathroom. My tongue is still tingling, so I'm going to continue to take the Alavert as a precaution. It could be a reaction to the Cromolyn - it's just too hard to know at this point what I'm reacting to.
Tomorrow and Tuesday, Mrs. Wols is coming to help me with Drew/Lucy while Adam goes to work. (He's taken off over 2 weeks already, and HR has questioned his time off. If my health continues to be this up in the air, we'll probably file FMLA so he's protected in taking more time off.) I'm very weak and shaky, so I'll be grateful to have someone here - even to monitor me at this point.
I will place a call into Dr. G first thing. I'm not sure what's next if I can't get the formula down; I'd be willing to do a feeding tube or anything at this point - I'm ready to move forward and get better!! We'll probably pack up the car and head to the lab in the morning to drop off the samples, then just stay at home and be with the kids until we hear from the doctor to figure out what's next and what we need to do.
Cherie came by with food for the family in the freezer. She's offered to drive me downtown if needed, if Dr. G wants to see me tomorrow or Tuesday.
I'll keep everyone posted with the news we get in the morning, and if we need to head back downtown. I'm guessing they'll ramp me back up on prednisone, but there is no way to tell. I'm also not sure what will happen if I can't get the formula down. Hopefully we'll know more in the morning.
Saturday, October 1, 2011
Another day
I was grateful to Adam today; Lucy still isn't sleeping through the night and he got up twice to take care of her and let me sleep in. I tossed and turned most of the night, but by 7:30 (about 2 hours after I usually take my morning pills) I felt awful. Chills, sweated, shaky, blurred vision - the morning "routine". I took my pills and layer on the couch until Drew got up. He sat on my lap as he had his morning milk, and I made him some toaster strudel afterwards. My stomach and abdomen both were throbbing and churning. I took cromalin today, so I wasn't sure why I felt awful - was it the drop in steroids, the new meds, just another crappy day? Drew clung to my leg by the toaster and I asked him several times to stop. He kept pulling on me, making my stomach more unsettled. I actually turned around and screamed at him. I can't even explain the look on his face. He ran off to daddy crying. I just started sobbing. I'm losing it; am I'm taking it out on my family. I couldn't believe I got to this low point. I drank my formula- which continues to be very difficult to drink - while Drew and Adam ate breakfast. Adam put Lucy to sleep afterwards, and Drew and I played while daddy showered. Then we put Drew down for a nap and I went upstairs. I felt so awful I just laid in bed; I didn't have the strength to shower. About 20 went by, and off to the bathroom. I guess the c-diff stuff wins again. Another sample collected (scary how it doesn't gross me out at this point I've done it do much) and went to take my shower. Then we packed everyone up, and Adam went to drive me to get my hair cut. I love Mrs. Fox, a long time friend and hairdresser, but I had trouble talking about things without welling up with tears. I was grateful to at least get a trim; when I do get the energy to do my hair, atleast it will look ok.
We came back home as both kids were tired, fed them and put them down for afternoon naps. Adam went to go buy new clothes and get done groceries in while the kids sleep. I'm resting, sitting up straight on the couch trying to keep the second formula of the day in. The acid is kicking my butt; it burns even burping the stuff back up. I'm nervous I'm not getting all the calories I need, but am really struggling with the formula still. I just dont know if the issue is the formula, the meds or the infection. Either way, it's a challenge.
I spoke with my Aunt Kathy today just to check in. It was nice to talk with someone. I hope I get out of this funk soon. I know I can be happier than this...
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