The final trials

I got news before the weekend that my last endoscopy (last week) came back normal. My stomach is inflammed - likely with the stress of my mom's lupus flare, my brother sick, Drew's GI issues, and the dog - but there are no eos in my system.  We start the final food trials now.  I just passed flour last week, and if all goes well, I'll find out tomorrow if I passed peas.  Canned peas weren't the most awesome thing in the world - I'm thinking I'm passed veggies and ready for just some junk food besides starburst.

I returned back to work on May 21, and worked a good 2.5 months.  However, 2 weeks ago, right before my endoscopy, I started having the severe crying episodes again.  I saw Dr. Ndrio on the 10th, and told him the issues.  We keep things the same, and I progressively got worse.  This past week, we doubled my psych meds to try and get me in control.  The depression and not being able to control my thoughts is a very, very scary thing.

My parents came to help today with the kids and brought us dinner.  I cried after dinner, apologizing for all that was going on.  I had been doing so well, and now this.  What a set back.  The new meds knock me out and I have to take them morning and night.  So, I'm not very useful at all in the day.  We're applying for short term disability to get me through this, and to not worry about the stresses of work in addition to all the issues going on. 

I sure hope God can hear us, as we sure need him right now.  I'm grateful the eos are staying away.  No stomach pain since the gallbladder was removed.  I'm grateful for so much; it'd just be nice to have all this other stuff gone too!

Eos are looking good - counting down to Oct 1!

Well, I made it through my first week of work and a weekend without Adam's help.  Heck, I'm EXHAUSTED.  I think I could sleep a full day.  My gi system has been all out of sorts, so I chalk it up to stress.  My lab results came back tonight, my eosinophils continue to look good.  So far in this round of trials, I passed turkey, chicken, pork (bacon, ham, and pork chops), and now oatmeal.  I'm eating a lot of stirfry's, turkey and potatoes, and lots of salads. 

Next week I start white beans.  The following week is tuna, then 6 weeks of nuts (literally).  I wish I liked nuts, but they are in so many things I have to do the trials.  I figure I should cook them all in sugar and that'll make them go down easier.  Oct 1 should mark the final week of food trials if I stay on schedule.  Not that I want time to fly that fast, but I am looking forward to getting there - and hopefully finding what's causing all of this.  My bet is on either milk or my body's reaction to my gallbladder (I'll test negative for every food trial).

I'm gaining weight again, so that's a good sign I'm back to my normal diet... although I would like to keep my size 6.  I need to start exercising, but being tired, it's just too much for me to get going.  I can tell how much stress messes up my stomach, and am grateful to still be on the meds I'm on to help with that.  I'm not sure I'd be where I'm at without them.

My coworker Brittany ran 1/2 marathon for Eosinophilic Disease, and we raised $845.  It was such a great gesture, and it's awesome that 100% goes to research on this yucky disease.  Yes, yucky.  Yucky formula, juice boxes, food trials, endoscopies - the whole bit.  However, I have little to complain about.  I've accomplished nearly a full diet, and could live quite easily on just what I've passed.  There are lots of people that can't even do that.  We count our blessings whenever we can.

Thanks for all the prayers - they really work.

Back to Work!

Today was my first day back to work since January.  I worked only 3 weeks back then before a relapse.  I stopped by the labs on my way into work to get tested for pork/bacon/ham this week.  I started oatmeal today.  It didn't sit super well, but I wasn't sure if that was work or the oatmeal or a combo.  So, we'll see what tomorrow brings.

I had a decent day, but am pretty tired after work, then coming home, getting the kids in bed, washing dishes, and finally sitting down.  I probably will be in bed by 9 :)  The meds make me sleepy, so that is a constant struggle.  Hopefully in time it will stop, but it's been like this for months, so I am having doubts.  I just have to be patient and wait until I can get off of it at the end of the year.  It'll be a nice Christmas gift to finish the trials in October, and taper off the meds by the holidays.  I don't want to rush the year, but I definitely look forward to it.

I'm very grateful I'm doing better; I hope I'll be able to say the same for my brother really soon.

Passed 2 meats!

I just got the lab results, and the turkey labs came back normal.  Eosinophils are still hovering in the middle of normal range.  So, chicken and turkey are ok.  This week I'm testing pork, which includes ham, pork chops, bacon - Adam is looking forward to this week, especially me making bacon which we rarely have.  I'm curious how my gallbladder - or lack thereof - will adjust as the fat increases in my diet. 

 I went out to lunch for the first time since August 31, 2011.  I visited some friends from my former employer, and we went to panera.  I ordered the Strawberry Poppyseed salad - less the pecans and dressing as I haven't tested those yet.  Basically an expensive chicken, lettuce and fruit salad, but it was nice to feel "normal" and go out.

I'm officially off the Neocate juice boxes.  It took my GI tract a while to digest, but it was a huge accomplishment to get a full diet and get protein from the meats to get off the drinks.  Unfortunately, I have nearly a full order from Apria in my possession. So, if anyone wants to try what I've been drinking, I'd be happy to provide Samples.  I've heard of fundraisers like "Eat like Betsy for a day" where people fundraise then do my diet.  I laughed when I saw it - so many people getting indigestion and diahrrea; it just doesn't seem like a nice thing to do for people that are raising funds for you.

I am feeling really good, exercising every night and not having any pain.  I'm really glad I got the gallbladder surgery and really do wonder if this whole thing was caused by it and the rest of this mess was all the medication reactions (eg. prednisone).  Oh well, too late to stop the trials now.  I'm over halfway done .  But even if it was all gallbladder attacks and my immune response to my GI tract, I won't return to Connie's to get deep dish pizza and test my fate.  I feel bad; it's such a nice restaurant and good buffet, but brings back awful memories.  I'll order Malnati's ;)

I head back to work next Tuesday.  I'll stay on the psych meds and the GI meds at least until I finish the food trials.  I've scheduled out every week of food trials this year, and I would have the 4th endoscopy on 8/6, and likely the last one on 10/1.  The final group only has 8 foods, so it goes quick, but they are the most allergenic - peanuts, milk, egg, soy, wheat, corn, peas, and beef.  I can't wait.  I told my parents we will have my birthday cake in October since I won't be through these trials by early August.

My parents and Adam have been great, making me foods I can eat and making extras so I can eat the same thing daily to ensure I'm not reacting.  Lots of chicken and turkey.  Tonight I had ham - it was yummy.  I've got the strangest cravings, and must force myself into an exercise routine or I will get super fat come the holidays :)  I want an Arby's roast beef sandwich and curly fries, chicken mcnuggets and a chocolate shake at McDonald's, a fried chicken sandwich at Wendy's with a frosty, our homemade yellow cake with buttercream frosting, milk and even dark chocolate, a nice glass of Reisling (which I hope to try in a week or so), a Potbelly Italian sub and an oatmeal/chocolate chip cookies, homemade chocolate chip cookies, milk duds, Giardelli Chocolate Brownies, Panera Italian sandwich with a bowl of chicken noodle soup, PIZZA, the list goes on.  I guess we should start saving for eating out :)   I thought I would list everything I've had cravings for, but it would be too long and probably depressing how many calories would be in it!

I feel that God has finally answered my prayers.  This has truly been a humbling experience and I'm glad to be on the mend. I won't take my health for granted again.  I'm really happy to be feeling good.

Started 2nd meat today!

No, this whole experience has not turned me into a Neocate Juice Box fanatic or a vegetarian.  I've been craving meats for months.  Last Monday, after my endoscopy, I started chicken.  Today I found out I'm not allergic.  I got to start turkey, and made turkey, sweet potatoes (mashed but plain), cranberries, and a salad for dinner.  It has been really nice to start eating two meats, and eat what Adam and Drew are eating.

It's strange to think in 2 weeks from tomorrow, I'll be back at work.  I left work in May 2011 just before Lucy was born, was on maternity leave 3 months, went back for 3 weeks, got sick with EoG, back to work in January for 3 weeks, then on disability.  It'll be essentially a full year that marks my return.  Time has flown by looking back, but remembering the pain and the mental aspects I went through, I remember how the days dragged on and how I just wanted to sleep the days away and feel good when I woke up.  I'm finally here - well, tired, but here. 

I've been relieved to not experience any issue with my gall bladder removed, and the abdominal pain went away after it was gone.  I've fully recovered and have 4 scars.  I figure with 7 scars on my back for mole removal, a pacemaker scar, heck, what's a few more.  The surgeon was more concerned than me :)

So, I've been thinking... since things are rolling along so smoothly.  Could this whole thing have been triggered by my gall bladder?  It got bad during pregnancy, I had a gallbladder attack after Connie's (that was a high fat meal), and was so inflammed inside due to the gallbladder in such bad shape, eosinophils started attacking the entire GI tract.  I don't know how plausible that is, but I remember my allergist stating that my surgery spiked eosinophils in my blood.  So, knowing I had inflammation in my GI tract, maybe the Eos were there because of it.  It would kind of explain why on my first trip to the ER, my Eos counts were normal.  Second trip - after I started eating more chicken broth, they were through the roof.  I'm not sure if we could ever prove the theory, but Dr. Gordon said it definitely could have been my gallbladder the whole time.  I will still continue the food trials, but I'm thinking now that I'm not allergic to anything.  We shall see.

My next scope is August 6th, just after my birthday.  I have to test pork, turkey, ham, tuna, oats, barley, rye, all nuts (individually per week), and beans (maybe I'll skip that for now).  After the 8/6 scope, we're on to the final trials, which will be 8 weeks of high allergy items.  That means, I'll be done by early October.  Yippee!  The end is year, and I can hopefully indulge in chocolate just in time for halloween.  No cake for my birthday, but it's a small sacrifice when I can eat so much other stuff.

I'm happy things are finally looking up, and I'm feeling good.  The tiredness is irritating, but I'm able to push through most days.  Thanks for the prayers; I feel God has finally heard us and answered me.  It was a nice mother's day feeling good :)

On to food trials round 3!

Well, I'm happy to report all good news. My endoscopy on Monday showed inflammation of the stomach, but I passed enough to start the third group of food trials. I have weeks mapped out until September on what I try - I started chicken this week. It seems to be setting well and I haven't reacted. Blood work on Monday; next scope on August 6th. This food trial has all white meats, beans, fish, and nuts. It'll take me until August to pass everything. I'm just excited to be cutting down from the juice boxes. I've been pain free since my gall bladder surgery so I'm still happy we made that choice. The psych meds are working well. After the kids go to bed, I work out for 20 minutes and then go to bed. At least tiredness is my only side effect. I'm still planning to return to work after memorial day; I just spoke with my boss today. I'm very grateful things have turned around. I still can't believe it's been 9 months now and Lucy is a year old already. It's amazing how time flies. We hope to celebrate a nice mothers day and hopefully Dave will be showing health improvements by then as well. I really appreciate the prayers. It's been a long journey but we are surviving. Makes you really appreciate life and all the people God blesses you with along the way.

BTW - the doctor at Loyola seemed a little overwhelmed by my case.  She recommended sticking with my current team at Northwestern for consistancy.  She reminded me I'm more than halfway done, and it was worth finishing and having the same doctor continue the endoscopies.  Makes sense; we're sticking through it.

Getting Better!

I haven't realized it's been 2 weeks since a post, but I'm feeling much better.  On Sunday, we made it to church on 4/1, but I was so miserable afterwards, I called my psychiatrist.  He took me off the zoloft and put me on zyprexa.  It's meant to rebalance the chemicals in your brain.  Well, in 2 days, the crying spells stopped, my appetite increased, and the pain from surgery gradually went away.  I had my surgeon 4 week check yesterday, and am healing up well.  I'm enjoying finally feeling better and continuing on with food trials.  I started oranges this week.

This month I meet with my therapist and psychiatrist, so it's pretty light and I'll get time to rebuild my strength and rest.  We're hoping to see my sister's family this weekend, but my brother David is in the hospital again and someone is going to stay home to ensure he has someone to help him if he needs.  May will be busy with get the dermatology visit, the new GI doctor at Loyola, and then the scope on May 7th.  If I pass the scope, I can finally get off the juice boxes and get my protein from chicken, turkey, pork and ham - my first trials after the 7th.  It will depend on the bloodwork, but I'm very hopeful it will go well.  If things hold up well, I plan to return to work after Memorial Day. 

I spoke to my boss, and they are happy to have me back (although they made it clear they did fine without me for 1 year, so not to hurry).  It hurts to be reminded how long this has gone on, but no sense in dwelling on that.  I continue to pray to God and my two uncles and St. Philomena and St. Peregrine for healing for me and my brother.  I know they've helped us get to today, and will continue to help us through whatever is to come.

Please say a prayer for David, and thanks for the continued prayers.  I'm psyched about getting to a full balanced diet next month!!

Can we even make it to church?

It's been 3 weeks since I've been to church. It bothers me I can't take communion with this disease since September, but it's even harder when you physically can't go. I've been feeling awful all morning and am laying in bed with a heating pad in tears while Drew sleeps and Adam cares for Lucy. Yet another day no yard work is getting done and we need it. I've been in the bathroom almost all Morning. I ate the same foods, took my anxiety meds and still had problems. I know I'm starting to worry about the Zoloft working, the diarrhea all morning every day even on this limited diet, no appetite, and my parents health. I pray that God heard me. I beg him for things to get better for our family and me. All sorts of changes are going on at work and that worries me too - will I even have a job at the end of this? I get lovely cards and emails from so many praying, but here I am. I beg God to have mercy on me, and help me through these difficult times. Depending on what happens with mom's hearing and sinuses and dads wrist, we may need to care for them and the kids. That was to be MY job. I need Gods help to get through this and pray that things will soon get better.

Doctor Visits

The morning started at very nauseating again, and I stayed in bed at Mom and Dads most of the AM after forcing some food down.  I had 2 doctor visits today - one with the OB/GYN to check another issue (turns out to be minor), and  one with the surgeon.

The surgeon said my incisions were healing up really well, and I could bath or swim - yea! She also said the throbbing on my side where the gall bladder was is very normal as well as the loss of appetite.  Most people lose up to 15 lbs after the surgery.  Now, I had called her office 2x prior and had 1 visit with another surgeon.  Why the heck was this the first time hearing this?  She said my gallbladder biopsy was very irritated and inflamed, so it gave me some confirmation that I made the right choice to get it removed.  It wasn't obvious if it was a problem for the pain, but since it was definitely inflammed on such a bare diet, it was time to go.  She did say the nausea was very abnormal.  She recommended gas drops to see if that helped relief gas (one of the side effects of the surgery, and unfortunately, one of the huge side effects of my juice boxes which I'm back up to 5 on, since I started losing my hair).  Diarrhea is another side effect of both.  The joys.  She seemed to think I was recovering 'ok' but not 'thriving' and wanted to see me again in 2 weeks to ensure I was getting better.  I still can't lift over 15 lbs for 6 weeks, so that sucks with the kids. The surgeon also recommended getting a GI test to watch how things move through my intestines.  She was concerned about how they felt during the surgery (I was backed up big time after 5 weeks of hydrocodone to control the abdominal pain).  So, I've called and asked to get that scheduled.  Best to get everything checked out.

I noticed my hands were trembling a lot today, and looked up Zoloft - the new med I was on.  Apparently, it causes nausea, tremors, and diarrhea, and usually subsides.  I'm on my second week, so I figure I'll start using the Xanax the dr. prescribed, and gut it out.  It takes 3-4 weeks usually to see the effects, so I'm hopeful the stuff I'm feeling will go away as I further recover from surgery and get used to this med.  If the effects don't go away in 4 weeks, I'm going to try a new med.  At least I'm sleeping through the night with the sleeping pill; that makes life better.  Wish I could sleep in, but that doesn't happen with 2 kids :)

On another note, my eosinophil counts doubled with last weeks food trial of strawberries.  No abdominal pain, but definitely noticable in blood work.  I called the immunologist, and asked him about the patch testing he had wanted to do for the chicken, before I try it.  I told him to look at my strawberry labs too.  So, he called and had a nice conversation.  He wanted me to try another week of strawberries and see if the eos raise further.  If so, no more strawberries.  If not, then it's probably ok.  Eos can rise from outdoor allergies, post-surgery, etc. so it's not super clear.  I have my labs tomorrow for eosinophils.  Then Monday, I get a 3rd round of environmental allergy testing and patch testing for meats.  I see the doctor on Wed and Fri to see if I produce a reaction.  I'd be more than happy to give up strawberries if that's what's causing this.  I will miss chocolate covered strawberries, but it's not worth the hell I've been through.  I'd give up a lot at this point.  I hope we can find the allergens through these food trials.  It's nice to have someone to talk to about this.  He seems very interested in my case (it is really food allergies, so he's learning something new with my case), and really wants to help.  I meet a different GI doc at Loyola on May 7th, the same day as the Endoscopy at Northwestern.  I hope to find someone I can relate to better than the team at Northwestern.  Fingers crossed.

Thanks for the continued prayers.  I'm very hopeful things will get better soon!

Still recovering

The adventure continues. No major changes, beyond the trip to the ER.  I dont feel very good most of the day.  I get up, shower, help get the kids ready as best I can (but Adam does most of the work), take a ton of meds, then off to Mom and Dads.  I usually eat breakfast with the kids - forcing myself to get something in as I'm still feeling full and slightly nauseated.  Then, I play a little with them as much as I can and rest for much of the morning in bed.  My side continues to throb, and I'm praying it's just a sign that I'm healing internally.  I just woke up with the pain last week, and it hasn't gone away.  I'm off the painkillers, just taking basic Tylenol. 

My mom took me to the lab today, where I had nearly 20 vials drawn.  Lots of checks on vitamins, etc. to determine if anything else is off balance and why I'm losing my hair.  My primary care is taking over my labs, so I'm grateful for that.  They are very nice and very responsive. 

I force myself to eat at lunch with the family, and try to stay up most of the afternoon unless I feel really bad with the throbbing.  I look forward to seeing the surgeon on Thursday to see if no appetite, the nausea, and the pain in the side is normal.  I feel bad back on so many of my old meds that I had to take to cure my steroid psychosis, but it's helping me cope daily.  I'm still very emotional and try to hold it in, espcially in front of my kids.  But I cry a lot in front of my parents and my husband.  I've begged God to get me better.  My godmother send me my uncle's relic of St. Philomina, and I've been praying to her as well.  I truly hope God will heal me and things get better.  It's been a very long 8 months.

We've had Reeses at our friend Kathleen's house since before the surgery, and we all miss him.  Drew asks where he is every morning and each night when Adam brings us home.  It'll be nice to drive so mom won't have to run me home to walk him each afternoon, and to have him back around again.  We've been very blessed to have such good family and friends helping us.  My parents and Adam have been more than amazing; I truly don't know how I would've gotten through this without them.  It makes me wonder when women say they want to be divorced and could care less if they have kids without a husband.  I'm very blessed to have such a good husband who has cared for me for 8 very long months.  Lucy turns 1 on May 9th... I so wish to be better by then.  I hate being so shakey and emotional, but I'll get through.  Being on so many meds, it's hard to know what's causing what at this point.

May 1st I find out if I need surgery on the pre-cancerous moles, and May 7th, I have my Endoscopy #3 to see if I passed fruits and can move to group 3 with chicken/turkey/pork and beans and legumes and some nuts.  I hope that these next two months will be a huge turning point. 

I sincerely appreciate all the prayers.  I know God is still with me; I'm just waiting for the answer to the prayers :)

1 week after

I wish I had some good upbeat news to post here, and I am so disheartened I don't. Nine days after surgery, I still have no appetite, and terrible panic attacks. I was given meds for the anxiety and depression and for sleep - which ended me up in the ER yesterday. I'm so tired of feeling so miserable. I want to be hungry and want to eat, and feel ok after I do. I'm managing as best I can and an grateful the pain is gone. Please continue to pray this heals. I need my health and faith renewed...

Surgery recovery

It's been 5 days post surgery, and unfortunately, I'm not where I thought we would be. Maybe I was over eager, or just too optimistic. The surgery went well and I'm moving around fairly well. The incisions hurt, but that's to be expected. The biggest problem is I'm nauseaus all the time. I have no appetite and when I force something down, I feel like I've eaten way too much and I'll explode. That's with rice and Gatorade. It's so disheartening. I'm grateful not to be on pain meds beyond regular Tylenol. I just want to be able to eat again. I was on my knees last night begging God for help. It's been so long. Lucy is now 10.5 months and I've missed so much time with her. Im still losing my hair in chunks and I don't know why. I'm going back on meds for depression again, as I just can't handle the constant disappointment. Even the hypoglycemia is back, since I was put back on anti-anxiety meds. There are so many wonderful people in my life and I am truly very blessed. I told Adam today I sound selfish asking to get better with all the good things and people that surround us, but I want my health back. Adams taking me to the surgeon today, as the constant nausea is not good. Thursday we see my primary care and the psychiatrist. Everyone is intrigued by my case and very helpful, but I want a solution...and end to this mess that started in August. I continue to trust in God; I just don't know what he wants from me...

Surgery Scheduled

Took 2 days, but the gallbladder surgery is official scheduled for Thursday, March 15th.  Adam is planning on taking me while Mom and Dad watch the kids.  Reeses will be going on puppy vacation again to the Wardlow's.  We're so grateful for our family and friends.

The scheduling took quite a bit of coordination, but they managed to get us in next week (it was that or April - yikes).  I'm very hopeful this will take away at least some of the pain, and if God willing, all of it and return me to normal.  One can only hope and pray.

We also got great news today that the insurance will cover the formula.  That's over $45K in unpaid bills that we now don't have to come up with.  What a blessing, considering I'll be drinking a lot more of this stuff in the future too.

I'm looking for another GI doctor at Loyola where my parents go, and they are helping with referrals.  I hope to get another opinion and find someone that I can have a better patient relationship with.  I don't feel that prednisone and psych meds are the way for me to manage this the rest of my life.  There has got to be some other things that can be discussed.

I get the second biopsy of the colon tomorrow - it was being retested due to the eos showing up.  I'm  hoping it's not active, but either way, I'm going through the surgery, starting up the food trials, and take my pain pills until I can't stand anymore.  I'm very curious how I'll feel after the surgery, but at least it's a shot.  Who knows- maybe the pain all along was this and the eos were just there. ;)  Far fetched, but would be nice.

Rough weekend

Well, we made it to church yesterday evening; it took a lot of strength to get to church, but I did my makeup and dried my hair at least - it bothers me how thin it's getting, but what can you do?  I'm up to 5 juice boxes to try and increase the protein levels again.  The call Friday evening by my GI doctor that there were eosinophils were in my colon, that they were re-reviewing all of the biopsies; the treatment with prednisone; the need to increase my psych meds which I was soo proud to get off of (they think stress may be causing the pain/eos vs. allergies).... it's catching up with me and made it a hard weekend mentally and emotionally.  Just makes me really wonder what my body is doing and why it's doing it.  What am I doing to cause these reactions?

We meet with the surgeon on the gallbladder early tomorrow.  We will likely proceed with that, as we know I have biliary colic and it should be removed.  Then, we'll restart foods that I've already covered and see where I'm at.  If that goes well, I'll start fruits.  It's been needless to say a very disheartening few weeks.  I'm questioning everything, second-guessing everything, and wondering why God gave me children I can't care for (I hate thinking that, but it's been 7 months... I don't get it).  After all the drugs, formula and light veggie diet, I should not be having issues; this is only 1 of 4 food trials.  No one understands what is happening, and that is very scary for me.  I don't cheat on the diet, I don't cross-contaminate, I follow ALL the rules and instructions since this started.  My body is just doing its own thing. 

I appreciate your prayers.  I truly hope that God helps me in the decisions needed the next few weeks and if it be His Will, this resolves soon.  I'm sure my brother says the same things for the last four years, and continues to do so.  That would be the biggest miracle if we both made it through this back to full-health.  I can't imagine it, but it was be such an amazing blessing for our family.  I always dreamed of taking care of my family and my parents as they aged, not them taking care of me and raising my children.  It's incredibly heart-breaking.  People mention going out to eat, going out on dates, being intimate with Adam - trust me, when you feel this awful, that's the last thing on my mind.  This has been hard on everyone, including my relationship with Adam and I'm grateful he stands by my side. I'm grateful my parents have been here daily and nightly to help us through, even when they are hurting and tired or frustrated with managing 2 little ones.

Thanks again for your thoughts and prayers in the upcoming weeks, as we make some tough decisions and try to find out what's causing the stomach inflammation and the eos to return.

Friday night's news - the eosinophils are in the colon

On Friday, I received a call from Dr. Gonsalves stating that while my colonscopy looked clean, the biopsies came back with eosinophils in my colon.  I had had them in my esophogus, stomach, and small bowel before, but not the colon.  The inflammation of the stomach and the new eos in the colon were unexplanable.  Dr. G was going to send the biopsies and ask to have them revisited.  We will get more news on Wednesday.

In the meantime, we meet with the surgeon on Monday and decide next steps on the gallbladder surgery and exploratory surgery.  Please pray that we can resolve this soon.  The eos showing up again has really thrown me for a loop.  With my diet, I don't understand how this could be happening.

I pray a lot, and hope that God guides us to make good choices and hopefully find another specialist that can help me work through this chronic illness.  I'm ready to move on!

Some more updates...

This week I met my new primary care doctor, whom I really like.  She gave me hydrocodone to help the pain.  I gave her the run down of the story (AKA the super condensed version of the blog), and she seemed happy to help, even with the disability stuff.

I stopped all food trials except some potato soup (water and potatoes - that's it), some rice, and some rice chex and applesauce to get the new steroids down.  I've been drinking more formula trying to put some weight back on and get more protein - I hate that my hair is still coming out in clumps.  I've never been more grateful to have a lot of it.  Most people can't tell, but I can feel how thin it is and see how thin it is.  Plus, I'm the one that cleans up the hair I leave behind, so I'm very aware.

My colonscopy came back clean.  The doctor said besides the inflammation in my stomach, she didn't see any signs of eosinophils (my labs I got today confirmed that too).  So that was good news.  On a bad note, she told me to go back on psych meds and if I had pain, see a pain specialist.  And I should go back on all the psych meds as I my stomach was better with them; I reminded her I had SEVERE hypoglycemia with the meds and the depression worsened, which is why I got off of them.  She didn't care.  I was so ready to burst out at her, she can be so unprofessional and just ready to dump you off on someone else.  I had steroid psychosis, I have EoG, and I have abdominal pain now - I would be crazy to have this all in my head.  I have proof of all of it.  With 2 kids and a husband, and being such a burden on my family, I wouldn't have just made all of this up.  Who would I make it up for?  I follow my instinct, and have been grateful that God has led me to where we are.

So, now what with the pain?  We're back to the gallbladder issue, and meeting with the surgeon Monday.  I'm still having pain when I eat/drink, and I've read and talked to people that have had similar problems.  Now that I can rely on teh formula and have the EoG under control, it seems like a good option to finally get it removed and take that out. Of course the GI doctor - I won't mention her name; it maddens me just thinking about her - said there was no way that the gall bladder to cause that pain. But she was also the one that told me that steroids can't cause depression and the mental reactions I had on the high doses, so credibility isn't so good.

We're off to see the surgeon on Monday, and I continue to take the hydrocodone to hold myself over.  I think it's the best option for now, and potentially the surgeon can do some exploratory surgery when she's doing the gall bladder removal.  Some lab work came back today, and 2 markers showed signs of inflammation.  I know my stomach is inflammed, so that could be it, but something has caused more damage since last December on a diet of formula and food trials of basic least-hypoallergenic vegetables.  It doesn't make since I would be in this condition based on this diet.

My brother had an MRI today, and we're awaiting his results.  He seems to be getting better with the new GVHD treatment and getting off some of his meds too.  It's hard to believe he'll be 4 years cancer free next month.  I'm so grateful he's alive; I love his so much.  I wish my stem cells would've been better and he wouldn't have had to endure the multitude of problems over these last 4 years, but I'm glad he's here and he's still fighting.

My parents and Adam have been a blessing helping me through this, and being with the kids.  I try to spend as much time with all of them, and smile at the kids.  They bring such joy to my life.  I just want to get better.  More news next week!

The pain continues

It's maddening.. to think I have been pain free since September, and we've started over on 2/17.  I'm on lots of hydrocodone to take some of the edge off, but it doesn't bring relief.

Dr. Gonsalves called Friday evening, saying my CT scan showed two areas of my colon under distension and wants to do a colonoscopy on Wednesday.  We're trying to eliminate EoG as a source of the pain.  That would be great, but leaves a heck of a lot of questions.

The ACHT test came back normal, so no need for steroids.  My body is making enough cortisol.  Praise God!  The biopsies showed 2 precancerous and one normal biopsy on my back, so I have a follow up on May 1.  Not too worried about that.  I may have a few more removed in May, just as a precaution.

Other than the massive abdominal pain - even from drinking water (flashback to August) - I feel good.  The hydrocodone is binding me up, but the cleanse on Tuesday should take care of that :)  I'm feeling really loopy on the pain meds, but it's the only way to get through.  I'm so frustrated, and continue to pray.

It's been a long road.  My mom said we all go through our time, and this is mine. I told her I didn't want it to be my time, and she laughed.  I hope the end of the pain is near and we can find some answers and get me fixed.  My faith has been tested, I know how much I love and need my family, and I totally realize I'm not in control of my life but in how I deal with it.  I'm ready to move forward.  Right now, just focused on getting to Wednesday for the test, and then finding out the results.  My mom has been coming over every day and evening to help with the kids.  It's been such a blessing with mom and dad nearby.  I'm not sure how Adam and I could have managed the last 6 months without them.  I'm doing everything I can to get better.  I really am looking forward to this GI stuff getting behind me!

More test results

The endoscopy yesterday showed my stomach was inflammed again.  It didn't look like the last scope where everything was calm. We're waiting on biopsies to determine the eosinophil field counts.  I also had a CT scan with barium and iv contrast; I'm still feeling the effects of that today and hopefully will get results today.  The abdominal ultrasound came back fine.

Based on everything that happened and the pain I'm in, I was put on 2 psych meds again (dammit!) and Budesonide (an oral steroid)... in addition to the other stuff I take.  I also have a stronger prescription for Hydrocodone to help with pain, which my mom just ran out to get for me.  I'm too uncomfortable to drive.

The sadness is a little overwhelming.  This could all be driven by stress - the thought of Dr. Ndrio no longer in the insurance network (that was a mistake), the bills from Apria, returning back to work and cantoring, my brother getting sick again, my labs being weird and getting all the ACHT tests done.  Worrying about the biopsies from the moles (1 is normal, 2 need to be monitored again in 2 months)... there's been a lot on my mind.  I'm sad now that I'm struggling with caring for the kids.  The pain really gets to me.  I'm still losing my hair, am very weak and tired, and my abdomen - literally all over - is still sore.  It's disappointing considering where I was just last week.  I was off all my psych meds and feeling good, with just some unsteadyness.

I'm hoping the rest of the results come back ok, and the new steroids will get the inflammation under control and get me back on track.  I'm not working on getting more disability paperwork filed for another month.  It's been a long journey.  I've been praying for my family, especially Dave and I, so much the last few weeks.  I hope we have the strength and faith to keep going and see the goodness in all that happens.

Abdominal pain is back!

On Friday, the abdominal pain returned. I was so uncomfortable, I laid down with a heating blanket - which made the pain worse. I had labs drawn and cried much of the day. I stopped the two new foods. I made it through the weekend, but my Monday night, the pain was back and so bad I woke Adam up. I had a pelvic exam Monday, and Adam took off to get more labs and get an ultrasound. I've been in tears since late last night. Why is this happening? Left two messages for Dr Gonsalves, but no response. Seems typical. I just wish I knew what was going on. The pain is 1" down and to the left of my belly button. I felt it hurt badly during the exam yesterday and the ultrasound today. Another test we will await results on... Please pray things will get better soon. In the meantime, back to all juice boxes for now to hopefully reduce the pain...

And one more thing...

Oh yes, one more thing - we have been fighting the insurance to cover the formula.  Apparently, just because it's state law to cover it, doesn't mean it applies to our insurance company.  WTH??!? So, $42K in Apria Healthcare formula claims since Sept 24th... (and much more to come as we are 1/4 of the way done with food trials only).  We hope to get some good resolution to this soon.  Unbelievable adventure. 

No posts in 1.5 months?

Wow - it's been a while since I last wrote!  It's been a hard two months.  I returned to work for 3 weeks, only to have to go back on disability.  I would cry on my way to work, at work, on my way home - it was obvious the after effects of the prednisone were too extreme, and the lexapro, trazadone, and klonpin weren't enough to manage it.

I thankfully received the OK for long term disability this month, and was paid out for December 3-January 21 (a much needed check). 

So, let's see, what's all happened.  The psychiatrist I've been seeing due to the emotional issues from the prednisone increased my amount of lexapro.  I got worse.  Then I was put on depakote.  Had an allergic reaction.  I finally asked him to give me a tapering schedule.  As of these week, I'm officially off every med, except for the Sodium Cromolyn (to keep those bad eosinophils from bursting in my GI tract), Prilosec (thank God for getting me off of expensive Nexium), and Potassium Supplements.  I also take calcium, a hypoallergenic multi-vitamin, but I don't count that, as I would do that anyways :)  I'm extremely grateful the CVS found a new brand for the Sodium Cromolyn.  I get a big box every 12 days, and it used to cost $160 a box.  Now, it's the typical $10 copay.  I didn't even know there was another brand, as everyone called it Gastrocrom - apparently, that's the expensive one.  Not paying that anymore will help the budget A LOT.

I had some moles removed - I love my doctors, but I could care less about moles with all the crap that's gone on the last 6 months.  Biopsies should be back next week.  I have also been severely asymptomatic hypoglycemic for the last 3 months.  I was sent to an immunologist and an endocrinonologist.  Go figure - I finally get to the endocrinologist and he has me testing my glucose levels 3x a day.  I had just finished the lexapro, and my blood sugar has been normal since.  I did some online research, and other people have also had hypoglycemia with lexapro.  So, I reported that to my doctors, and am grateful my blood sugar is back on track.  Unfortunately, my cortisol levels are low, so the doctors did an ACHT test this week.  I'm REALLY praying this will come back negative.  If it isn't, the solution is prednisone, and that is what got me into this downward spiral of medical issue and steroid psychosis.  I think someone would have to cram it down my throat after all I've been through.  Please pray; we hope to get an answer early next week.

Food trials are going well. I have endoscopy #2 next week with Dr. Gonsalves, to see if I passed food group 1.  If so, I'm on to all fruits.  So far, I can eat grapes/raisins, olives (both green/black), rice (and rice chex), green beans (all kinds), zucchini, carrots, lettuce, tomatoes, apples and pears.  I am waiting for results on garlic and asparagus.  I still need to test peaches, plums, broccoli and cauliflower and maybe some peppers (green, red, yellow).  I feel like a rabbit, and have increased my juice boxes from 2 to 4 a day, as I started losing my hair and freaked out.  Not sure if it was the meds, but it was enough to make sure I was getting more amino acids (broken down protein) back in my diet.

So, it's been  A TON of doctors appointments, labs, food trials, and medicine tapering and withdrawal symptom management.  I've learned a lot, taught my doctors a lot, and hope to get some good news next week.  I still struggle with dizziness, easy bruising, and some other weird side effects, but I'm hoping that will get better as I finish these withdrawal effects.  I'm significantly better from where I was 1.5 months ago, and night and day from where I was when all this started and when I was on the prednisone.  God has really challenged me, and I feel I've come out stronger.  I continue to pray for healing, and some good lab results next week with the ACHT results, the biopsy results, and the endoscopy.

And that's all I'm willing to share on this public blog.  Those that know me very well know what this has been truly like for me and all that I have been through.  I've only shared some of the most horrific details with a small handful, and I feel good about that - that I was able to make it through some truly dark times.  God has been good, and I know He will continue to bless me and my family.  Thank you all for journeying with me.  More to come next week!
 

So far... so good

I went back to work this week; it's a struggle emotionally - lots of memories of 4 months ago, and hard coming back after essentially being gone nearly 7 months (Lucy's birth then being sick).  I'm working part time for January which was recommended by my managers, and was a good idea - I really need it.

So far, so good on the food trials.  I can drink the usual gatorade, grape juice, ginger ale, and now coke :)  I can also have rice, green beans (any kind), grapes (including raisins), and apples (this is the current trial).  My labs show my eos are climbing in my blood, but are still in normal range.  I hope things continue to be ok in there.  I found out I could have rice chex, since I passed rice, so I tried that tonight.  It was fun to have something more like a snack, and something crunchy.  Thursday mornings I do blood labs, and start the next new food.  Potatoes - not sure if white or sweet - will be next.  Then on to lettuce and tomatoes and olives, or some other fruits.  I'm pretty indecisive; looking in the pantry is overwhelming - it's hard to fathom being able to eat even 20% of what's in there, but hopefully by next year, I'll be looking back thinking I did it.

No news from Dr. Gonsalves on when the next scope will be, so I'm just forging ahead on 1 food a week and watching my labs.  I see Dr. Gordon on the 20th to check my heart.  She's my favorite doctor (next to my cousin Katie of course).

Happy New Year!  I hope this brings good health to everyone; not to be selfish, but especially my family.  An uneventful year would be awesome :)

Passed 3 food trials!

Got my labs back for the last two weeks.  Passed green beans last week, and rice and grapes this week (grapes were a freebie, since I could drink grape juice).  Ate my first bites of applesauce and dried apple chips tonight.  Strange diet, but better than drinking 5 juice boxes a day.  Down to 1-2, depending on how much I fill up on the rest of the solid foods.  Starting to feel more normal eating SOMETHING.

Hopefully the new year brings more good foods to eat, and finds the cause of this disease.  Healing for my brother would be awesome too.  It's been a good, relaxing last week to 2011 with Adam off work and spending time with the family.  Killed me not to have any desserts or even a pizza or steaks, but I survived :)

Let the food trials begin!

As you can probably guess by the title, the week went well.  I had my endoscopy on Monday, and it showed that everything was "calm."  We found out Thursday that the biopsies showed no eosinophils (EOS), which is exactly the result we wanted after the Neocate diet and prednisone.  The allergy testing on Tuesday showed every food group was negative, as well as every environmental factor.  I had mixed feelings on that - I was hoping something would show so we could get a little clearer idea of what caused it, but I'm glad nothing showed up as I've never been allergic to anything in my life.

We met with 3 doctors on Thursday.  Dr. Gonsalves is keeping me on the current meds and ok'd me to start food trials.  We'll still do weekly blood testing to monitor the EOS levels.  Then we met with Beth the dietician, and she went over the food trials. I picked my foods to cover 1 month.  No seasonings but salt, pepper, and olive oil.  It's disappointing to think how long it will take to start getting to eat my normal foods, but it's food!  I had my first can of green beans last night, and a second tonight, both of which I digested just fine.  My body is adjusting internally obviously to the solid food, so that'll take a bit of work-through, but no pain and I get to eat.  My mom made fun of me eating the whole can, but heck, when it's all you can have, you do it.  I will continue to drink the juice boxes for the next year, until we can test all the foods.

Next week I can start plain white rice.  I have to be very careful reading labels to ensure it wasn't in a manufacturing plant with another allergenic item, etc.  Minute Rice was safe (the big box), so I picked up some of the rice I could microwave (pre-packaged).  Found out that had soy in it and put it back.  It's amazing how much stuff is contaminated with other high-allergy items.  I ended up buying some stuff I'll be giving to the food pantry.  I'm very hopeful we'll fly through the first few food groups without relapse.  Unfortunately, peas are on the highest allergenic list, so I won't get to have those probably for about another year.  But that's ok.

I may not be able to eat green beans sauteed with margarine and onions (that would be 3 weeks - one for beans, one for onions, one for margarine), but at least I can do beans for now.  I'm happy for Christmas I can have rice and green beans.  We've come a long way, and I'm hopeful for the future.  I plan to return to work on January 2nd, part-time to start.  The steroid psychosis is under better management and seems to be improving.

I thank you all for your prayers and support during these last four months.  Have a Merry Christmas!

Endoscopy Day

Adam took me downtown for the endoscopy today, following Drew's 2 year appointment and Lucy's appointment at the doctors.  We drove Dave back downtown with us.

The sedation didn't work on me, so I was awake. Not super comfortable, but better than being awake during a colonoscopy I would think :)  The doctor mentioned things looked calm, so I'm assuming that's good.  We will see her on Thursday, and hopefully we will have some answers on how the biopsies looked.

Tomorrow, Mom and I take off at 6am to head back for allergy testing.  Pat Jarot is babysitting for us with my Dad, and Adam will go to work.  he has to take off again on Thursday for the doctor visits, so we're trying to split things up.  I still can't believe Drew will be two on Sunday.  Hopefully mommy can come up with some small party to celebrate.

The psych meds are kicking in, and I'm feeling better emotionally.  I'm super tired with all the sedation meds and getting up early and no naps, so I'm off to bed.  More updates will follow throughout the week...

Big week ahead

It's been since 11/29 when I went off the prednisone, and the big week of testing is here.  David and I had the Sacrament of the Sick today from Bishop Joe, and I feel prepared to face the week.  Tomorrow is the endoscopy (3 hours), followed by allergy testing on Tuesday (3 hours), and meeting with 3 doctors on Thursday.  I hope the results show I'm in remission and can start the food trials.  It'll make the 3 long trips back and forth to Northwestern on 3 separate days worth it :)  Wednesday and Friday will probably be days of rest, as I still don't have tons on energy on this diet.

Mentally, I'm doing better with the new anti-depression and anti-anxiety meds.  My parents have been a huge help to Adam and I the last two weeks; I reacted badly mentally/emotionally when I stopped the meds, just like when I dropped from 30 to 20mg.

I hope to share some good news later this week!

Off the Prednisone

It's been over a month since I last blogged; the last 4 weeks have been extremely difficult physically and emotionally with lots of ER and 1 hospital visit mixed in.  I'm happy to report today is my first day off the prednisone.  It'll still take a while to get it out of my system (I'm feeling rather yucky today; my stomach isn't happy), but it's still a milestone.

The next big event is 12/12, when we get the endoscopy done and check to see if the eosinophils are gone from my GI tract.  On 12/13, I repeat the allergy testing.  On 12/15, I meet with Dr. Gonsalves, Beth, and Dr. Taft on results and the food trials, pending my scope comes back clean.  I'm trying not to worry about it, but I'm so very hopeful the 2+ months of prednisone fixed all the inflammation. 

My short term disability ends this week, and the filing for long term takes up to 45 days.  I'm hopeful something will move more quickly, but am not getting my hopes up.

It was nice to be with the family for Thanksgiving, even if I couldn't eat.  People ask me a lot of I think about what God is telling me with this illness; I'm truly not sure yet except to be more grateful for the time I have and for all the help from others (and to be available when they need help too). 

So, for now, it's a waiting game until the week of the 12th.  I feel I've missed a lot in the last 3 months, but try not to focus on it.  I hope the new year has lots of good things in store for our family!

Thursday

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!

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.

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.  

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 :)

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.

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!

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 :)

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...

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 :)

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.

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!