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!
Sunday, February 26, 2012
Friday, February 24, 2012
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.
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.
Tuesday, February 21, 2012
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...
Friday, February 17, 2012
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!
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!
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