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 :)