Um, did someone see April? And I'm not talking about the giraffe...I think I missed it...I cannot believe it is already May...when did that happen???
May is always a busy month for our family. Mostly because my mom gets some hard core celebrations going on and the rest of us go bankrupt. Not only does my mom get to celebrate Mother's Day this month, but it also happens to be her birthday month AND anniversary month. While most years I think I can safely say I am much more prepared going into this month of motherly celebration than my brother, I may have to admit that this year he will walk away with the favorite child of the year award...I won't go into much more detail since my mom is usually the first person to read these blog posts, but I will say that even though I'm not usually one to concede defeat, I do know when I've lost a fair fight. And I suppose it will be good for Devon to get at least one year of being the favorite =P
Aside from the favorite child of the year competition and celebrating my mom, I've got some GI testing, appointments, and scheduling coming up in the next few weeks. Plus some exciting news that I will share in a later post, so stay tuned for a major Bokatopia update!
I am *hopefully* getting my feeding tubes changed sometime next week. This is not at all related to the issues I had with Sherman (J tube) a couple of weeks ago, but just normal feeding tube maintenance. This will be my first tube change since having my GJ tube split into separate G and J tubes. Despite the issue with Sherman trying to escape my intestines, I really have preferred having the 2 tubes vs. the 2-in-1 tube. My G tube drains more easily since there is not a smaller tube running down the inside and my J tube can't kink anymore, both have been incredible benefits. Actually, the best part of having the separate tubes will be realized very soon when I get them changed. Because of my anatomy, when I had the GJ tube, I had to have it changed during an endoscopy so they could get the J extension into my intestines and stitch it into place. Since me and anesthesia don't get along so well, these procedures were always a source of stress both for me being nervous for the procedure and anaphylaxis stress on my body from the medications. Having the separate tubes means tube changes can be done MUCH more easily and without having to use any sedation or anesthesia!
Ironically, despite no longer needing to be put under for tube changes, I will need anesthesia next week for a colonoscopy...so not fully escaping it yet...but hopefully this will be the last time for a while! (I know I said that last time, then I ended up having J surgery less than a month later, but this time for real!) Since our first 2 rounds of GI testing have not really given us any information we didn't already know about my cranky insides, I am having a colonoscopy next week. I've had enough endoscopies that my doctor felt that we didn't need to re-do that, so just a lower scope. It's been about 10 years since my last colonoscopy so even though we're not really sure we'll get any answers from it, we all feel that it needs done. Actually one of the reasons it has been so long since my last lower scope is because up until recently, I could not get my intestines to move without prescription motility medications. Even with those, it was a challenge at times to keep things from causing partial obstructions in my bowels. My doctors were concerned that even with the typical colonoscopy prep I wouldn't be able to get empty enough for the procedure...so we held off. Since November, however, my intestines have all of a sudden gone into hyperdrive. Not fun symptoms to have been dealing with for going on 6 months now, but at least it will be easy to get adequately cleaned out for the scope...small blessings =P
After the colonoscopy I'll be following up with my GI to determine what (if anything) came up during the scope and where to go from here. We're running out of things to test and potential causes for my intestinal issues at this point, so please be praying for discernment for my doctors to know what they are looking at and what to do and wisdom for us as we have to make treatment and testing decisions that may not be what we were hoping.
The next possible appointment is with my neurologist. When I was in the hospital with my Sherman issues, I had an EEG come back abnormal and a brain MRI that was flagged as inconclusive. I was told to follow-up with my neurologist, so I took the disk and report for her to review and decide if she needed to see me before my scheduled appointment in July. Hopefully this is nothing and she will be able to tell it is relatively the same as my MRI from last September. If not, then I'll be seeing her a lot sooner than I expected.
I am also working on scheduling with 2 new doctors this year. I know, I thought I was done with new doctors, too...apparently appointment scheduling for a rare disease patient is never done...One has actually already been scheduled. When I saw my allergist last week at my Xolair appointment we discussed where I felt like I'm at right now and my current symptoms. Despite now going on 45+ days epi-free he agreed that we have not really solved anything, just given me more tools to manage things until we get actual answers. Unfortunately, those answers are continuing to be very slow in coming...He recommended an autonomic neurologist that he shares a few patients with as someone who might be able to piece things together. I called to schedule with him and have an appointment on October 31. Don't worry, I'll remind you when it gets closer =P At least he is right here at the Clinic.
The other appointment is with a geneticist in Florida. I did see a geneticist here in Ohio a couple years ago, but considering she had not heard of mast cell diseases or POTS, I'm not confident that the appointment accomplished anything. I was given the name of this geneticist in FL by some friends who have had similar symptoms and diagnoses who felt like he was finally able to pull all the pieces of their puzzle together. Despite having a solid mast cell diagnosis and very much trusting Dr. Afrin, there are still outstanding symptoms that just don't quite seem to fit and keep reappearing and progressing. Even Dr. Afrin encourages his patients to make sure we're not missing something else simply because we have a mast cell diagnosis, so we are doing what we can to make sure we have covered everything that could possibly explain these odd symptoms that don't quite fit in anywhere right now. This appointment will hopefully be sometime in July, and we are still deciding whether to go in person or do a video consultation.
So that's what's coming up in the next few weeks. My updates have been less frequent lately mostly because not much is going on. We're in a holding pattern while we wait for scheduled testing, follow-up appointments, and scheduling with new doctors. There's just not much to report. I am thankfully 45+ days epi-free thanks to Mort and having IV benadryl, and almost 3 weeks ER-free thanks to IV zofran. We are able to manage things at home (sometimes more effectively than others), but not really making much progress in terms of resolving symptoms and getting me feeling better.
I have some days that are more good than bad. I have a lot of days that are rough with a few hours of relief sprinkled in. I have some days I'm barely able to walk down the stairs to let the dogs out. I spend many nights in the bathroom in pain and throwing up. I often use multiple doses of IV meds to get through the days and keep me from needing epi or the ER. I am sometimes able to drive myself to appointments and other times rely on friends and family. Some days I need a wheelchair just to get out of the house, other days I'm able to chase Leni in the yard for a few minutes. It's a lot of managing symptoms, seeing doctors who can hopefully help, and praying for strength in the meantime.
And in that meantime, we're still smiling! Our motto in Bokatopia is "Smile Every Day" and we do. Some days it's because things feel good and we're thankful, other days it's through tears and much tougher, but no matter the day, it's always because we have hope in Christ that we cling to even when life is tough. Even Leni gets in on the smiling!