Monday showed no signs of improvement over the previous day. Mrs. Wols came to help with the kids. I hadn't slept well with Lucy getting up at night, and with all the steroids. Lucy was teething and uber fussy, and Drew was clingly and crabby. They obviously are aware of changes in the routine too, and really wanted their mommy. It was really wearing on me, but I tried to rest and have Mrs. Wols help out anywhere I could think. I was grateful to have the help, as I couldn't have done it on my own.
I spoke with the nurse at Dr. Gonsalves' office, and they spoke with Dr. G. Basically, they wanted to try a competitor brand formula, but before that, do some allergy testing to ensure I wasn't reacting to the formula. If I did react to the formula, they wanted me to be tested for things like apples and grapes, and potentially add those solid foods into my diet. Maybe things like mashed potatoes too. HUH???? Doesn't this defeat everything we're trying to do to get me into remission? I thought the goal was the elemental diet and the steroids; every day, new story.
I questioned the sucrafate stopping, the drop in prenisone, and the cromolyn, and asked if I could be moved back to where things were last Friday. It took all day, but Dr. G called me back late Monday afternoon. She didn't want me to try new formulas if there was a reaction, and wanted me to do an oral challenge and to set something up with Dr. Saltoun, to see if I was reacting to the formula. She didn't think it was a reaction to the meds, but we're staying on 40mg of prednisone (Friday I dropped from 60 to 40mg), I started up the sucrafate again, and stopped the cromolyn. I mentioned Dr. S didn't want to do allergy testing, as my results were so odd from before. I couldn't imagine I was reacting now, after a week of formula. While I wasn't getting the quantity goal in, at least it was ok before. The tingling and burning in my mouth and esophagus were too much to bear. I left a message with Dr. S for next steps.
So, I just focused on getting the liquids in on Monday. Monday night, I took my flagyl (I can't wait until that is done), and then tried just 4 oz of formula, sipping it really slowly. It burned. And I felt all tingling in my mouth again. I took an Alavert and tried to calm myself down. I could tell I was anxious. I didn't sleep at all Monday night.
Tuesday morning, I asked Adam to stay home to help Mrs. Wols. I was so tired and weak, and I knew my parents would be home from their trip to NC by noon. Adam was great, allowing me to rest upstairs and make my phone calls. Dr. S called 3 times personally today. She worked with me and our Apria rep (yeah, had to coordinate that crap again), to get me some new samples, using Neocate vs. EloCare. She didn't think I had an allergic reaction, and didn't feel the need to do the oral challenge, but to keep her posted and try one at a time to see how it goes. I'm starting to feel like I'm becoming "that patient", but I have no idea what's going on, and I tried to be as nice and friendly as I could on the phone as they worked with me on what to do next.
I took my tums around 11am, and a light bulb went on - I started taking those calcium supplements on Friday too. I felt all tingly again with those, and read the ingredient label - made with milk. Holy cripes. So, I'm going to switch to caltrate, and maybe that'll help things along too. So many things to keep track of; it's exhausting for someone in this condition. I need a secretary.
Unum called and wanted more information on the short term disability claim. We've been treated by so many people, it's been chaotic. I'm hoping I can keep coordinating that and get everything that's needed.
Apria screwed up the order, and says it will come tomorrow, which I just found out this evening. Always something. I guess what's another day at this point? It's unfortunate things can take so long. So, we try again in the morning with some more samples and hopefully something will click. If so, I can get the nutrients back in and keep on track. I'm literally counting down the days until I'm off Flagyl (end of day Saturday is the last pill), and see how my insides feel with that gone. I was able to do several lab samples today, which Adam dropped off for me.
My parents came over for lunch - heading here straight from the airport, and Drew was as happy as a clam. Just all smiles and hugs, and Lucy just cooed at my mom (until the fussiness from the teething kicked in). I'm hoping we can get back to the routine again this week, and I can focus on getting rest and getting some nutrients in.
Tomorrow is another day. I'm eager to try to some new samples and get back on the road to health. My goal is to find something that works, and get a new prescription in. I'm so done with this. I continue to pray, and thank God just for every day at this point. Last night was scary, just not knowing why my insides are so uncomfortable, the formula doesn't sit, my body getting weaker, the mental unfocus, and more. It's a lot to handle physically when you're weak, plus with 2 small kids and a husband that really needs to go back to work.
I spoke with my employer today, and I think we're going to go on long-term disability. I'm unable to drive, focus, and do my work with all the medicines I'm on, and trying to get nutrients in me. I can't be relied on, which isn't good for business. I just don't know what each day will bring, let alone how I'll feel each week with a prednisone drop and eventual introduction of foods (which could cause relapse). So many unknowns. While it's a major hit to my ego and our finances, I think it's probably the best decision. Every hour of every day is different - sometimes I feel good and other times I feel so weak and wobbly that my head will roll over my shoulders. We never thought we'd encounter all this when we decided to pay off the van last month, thinking medical bills were done for the year now that Lucy was here.
I'm still living in hope that this is all post-partum stuff and it will automagically disappear in a few weeks. We'll never find anything I'm allergic too, never have a reason why, but I'll go into remission and all will turn out. It would be frustrating, but a blessing. It wouldn't be a surprise after all the infections and antibiotics and shingles and migraines - Lucy's pregnancy was no means easy. And I think we have a clear confirmation from God not to have any more kids; we can't take any more and we got one of each which is what we had always hoped for. We can't risk not having mommy in the picture. Adam's ready to have surgery now!
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