It’s Saturday August 28th. My “sick-anniversary” is September 20th and this is always a really weird time of the year for me. I avoid most the memories on my phone because the thought of my old life still makes me sick. I can still put myself right back into my life in 2018. And to think that I’m entering my 4th year of being home bound, 6th year of being sick is just wild. I mean A LOT has happened but 3 full years worth? Thats crazy. I jumped from being 22 to 25 so fast. It’s honestly a weird time in life. For so many reasons but one is that I have friends in so many different walks of life right now and unfortunately being sick at 25, when all your friends are in their prime, is really freaking hard. It’s been a constant battle to this day. I wish so badly I was experiencing life with my friends and family. To cope with this, I fill my time not scrolling anymore, but writing, making content for my brother’s football program’s media, reading, or watching trash tv. I feel that in life you are constantly trying to better yourself and constantly trying to stay healthy in your mind, body, and soul in a world that is addicted to information, posting, and likes. For me, I have had to work on various different life skills over the past years. Going from 22-25 in bed, without having the normal life experiences that my peers have had has made it crucial to stay emotionally mature and aware. I have a close relationship with my therapist and I have a very strong sense of self because of what I’ve been through. For that, I am thankful. The depths of my illness have brought out the best parts of myself, but its also brought out the worst parts of myself, and those- I work on. Hard. Like I said, constantly bettering myself.
Sometimes I feel like I have SO much to share, ya know? And then I get overwhelmed and dont share anything. I am fighting a hard battle right now with my health, and I know when that calms down I will be able to share even more about my life in the hopes of helping other’s with theirs. I have found such comfort in my online community who battles some of the same diseases I do. It’s been so helpful to vent and relate to friends who have been through a lot of similar health crises as me. We can joke about our malfunctioning bladders and leaking in the bed, or the wrench that’s tearing our ankle apart due to autoimmune joint pain. It’s just a different level of understanding that has been so helpful for my mental health as well.
Okay enough of me ranting…. I am going to update everyone on what’s been going on with my health the past 2 months or so. Pippa is curled up next to me and I’m on my 2nd iced coffee so let’s do this! I’m going to break up my health into three different categories: Lupus, Diabetes, Spine.
Lupus: My rheumatologist is switching my immunosuppressant from Cellcept to Imuran. I will start it this week. I’m still stuck on wanting the Abatacept but my insurance is NOT budging on it and it’s really frustrating. I need the diagnosis of RA. They won’t consider my CTLA4 as a diagnosis even though the treatment for CTLA4 genetic mutation is Abatacept. I’m hoping in time it gets approved for additional diseases such as Lupus and T1D, and then I would have no problem getting it. We are going to file a grievance with the insurance company for it. He also wants to see me in office and have me get both ankles, hands/wrists, and elbows x-rayed and do a physical exam. I might possibly get the RA diagnosis here and that would be SUPER SUPER helpful. *Prayer warriors- please pray for a breakthrough here!* My lupus symptoms are still debilitating… fatigue/malaise every single day, joint pain, bad malar/butterfly rash, nausea, muscle pains, etc. Imuran will take about 3 months to show if it’s working. If you have thoughts about Imuran please reach out to me!
Diabetes- Ugh. I’m having a reallllllly hard time with this one. Lupus has moved to my pancreas. I was hospitalized about 6 weeks ago for my spine and while there they put me on a high dose of prednisone and my blood sugar spiked up to the 400’s for the week. They were administering me quite a heavy dose of long acting and short acting insulin. The last day they stopped the steroids and sent me home thinking the blood sugar would just return to normal. Fast forward a month, and home health catches my blood sugar in the 400’s again on a blood test. My A1C was 7.9 before the hospital so it’s probably 2 notches higher now because it’s been high for so long. So they up’d my metformin dose, started me on Trulicity, and insulin, both long acting and short acting. I have required a large amount of both forms of insulin and after talking to some trusted people and doing some research, it is probable that I have Type 1 Diabetes and not type 2 diabetes. Another reason to back up T1D is my CTLA4 genetic mutation also leads to T1D… so now CTLA4 would’ve caused Lupus (SLE), Hashimoto’s, T!D, and maybe RA. (CTLA4 doesn’t cause Antiphospholipid to my knowledge). I follow up with both my extensivist and endocrinologist on Thursday so I will keep everyone updated with that. The day after I found out I had diabetes I cut carbs and sugar out of my diet. I haven’t had sugar for 2 weeks and I’m eating super super clean. My endocrinologist wants me to have 30-45 complex carbs a meal, so I’m allowed to have some healthy grains as well.
Spine- I now have 4 levels of central disc protrusions causing spinal stenosis and compression of nerves. I was hospitalized for a week while they tried to calm the inflammation in my spine and control my pain. It was a horrific hospital stay because half the doctors were saying it was just a muscle spasm and the other were saying I possibly needed emergency surgery. They decided to discharge me and said they would perform the surgery outpatient hopefully after I got an EMG. The EMG came back normal and we had the outpatient ortho spine appointment set for a month out. I wrote about on my instagram story what happened at the Ortho Spine appt, but I will summarize it again here. I was completely discriminated against for my weight. The doctor walked in, sat down & said it was awesome my strength had improved and I was in a wheelchair instead of a gurney now (……..) he said that since my weakness has improved so much that was no longer a factor for needing surgery. We didn’t get this bc the only reason it’s improved is because they put me on the nerve medicine Lyrica, and a new muscle relaxer, Robaxin. In addition to my Baclofen (another muscle relaxer). Soooo it’s a band aid to the problem. Anyways. The next question he asked (which was when I knew the appt was going to not go well) was if I have been talked to about having gastric bypass surgery. Weight loss surgery. Yes. The doctor. The orthopedic surgeon’s first question was about my weight. He proceeded to keep talking about my weight in the essence of my weight causing my disc bulges & it not allowing me to have spine surgery. He also talked about my comorbidities and how much of a risk surgery is with all my health conditions and how many complications could happen. My mom then said so she can have weight loss surgery with all these same risks but not the back surgery she needs and he didn’t really give an answer. Then he said that he thinks we should try epidurals again but at the new disc levels. He also suggested they do a percutaneous discectomy. Which is a procedure where they go in w needles and remove some of the fluid from the discs. He said he would set me up with their physical medicine team to do both procedures. Well, we met with the physical medicine doctor he sent me to, and they had never done a percutaneous discectomy before and weren’t going to… then suggested I see my usual pain medicine doctor for the epidurals. The ortho spine doctor also didn’t know much about my case- not even the amount of disc bulges I have or what treatments I’ve tried. He didn’t walk us through the 4 different MRR’s that showed new disc bulges and compressions every time. He also basically said that we were shit out of luck w my bladder and it’s permanently damaged. He said if surgery would’ve happened in 2018 when I had Cauda Equina, it wouldn’t be this way. Nothing to do now but work w urology on catheterization as I’m still on an indwelling Foley catheter. I just can’t even accept that as an answer. I can’t believe we waited a month for this. He had his mind made up before he came In the room. I wasn’t given a chance. I was discriminated against for my weight and complexity as a patient. And that’s really really sad and really really hurtful. It’s also really freaking annoying that each doctor is just kicking the can down the road and won’t touch me bc of how big of a liability I am. My pain management doctor is going to do an epidural at L5-S1 where my largest disc protrusion is and hopefully that will help for some time. I just dont know anymore. We couldn’t get that procedure set for a month either.
It’s just all very frustrating. There’s lots of moving pieces and it’s a lot to manage. Especially when I’m as sick as I am. Thankfully with the insulin my numbers have come down a bit and so have my symptoms that were attributed to blood sugar. Crazy thirst, hunger, fatigue, and blurry vision were some of the worst symptoms. We couldn’t figure out why I was drinking 200-300 ounces a day. It makes sense now…. CTLA4 is the culprit of this mess. And I am going to make it my mission to figure this genetic mutation out and get my body the right treatment so I can get back on my feet and start rehabbing, I just want to feel better. I just want more out of this life. I won’t accept this way of living and I’m going to push my hardest to battle every day. Thank you for reading this crazy long post if you made it this far. And thank you for supporting me whether I know you or don’t, or whether you follow me silently or we talk…. I am blessed to have you backing my journey. I know I’m going to get through this with your support.