That Chronically Ill Christian: Health Update – 7/11/24
Health update:
Hi friends, it’s been a minute since I’ve been on here. But as promised, I’m here with another health update. It’s super long so thanks if you read it all. I’m going to categorize everything so it’s easier to follow.
✨ POTS
My POTS lately has been all over the place. For awhile I was doing a bit better but lately, I think with the heat and chronic dehydration, it’s been touchy. I have been passing out more recently than I had been in the last few months and that’s been disheartening. I used to have the issue of fainting while eating or shortly after but that went away for some time. Sadly that has returned and that’s been really hard. It’s always hard to watch your body sort of decline but while it’s been tough, it’s nothing like it was when I was first diagnosed. So while it still sucks very much, it has gotten better.
✨ PHYSICAL THERAPY
I have been in physical therapy twice a week since the end of January and have made great progress! I originally went for my body being deconditioned from being bedbound with my POTS/IST/Seizures for most of last year. I also go because of my functional limb weakness. I have already reached one of my goals which is to be able to sit for longer periods of time and I am about half-way to meeting my other big goal which is to walk for 10 minutes straight because I really want to walk my dog Sunnie! It’s amazing to see how far I’ve come in just 7 months and I can’t wait to see what the next few months hold. I still walk with my walker when I am out and about but I don’t use any mobility aids at home except for a shower chair and rarely I’ll use my forearm crutches.
✨ SEIZURES/FND
I was in the hospital last month being monitored for epilepsy and I’m thankful that I do not have epilepsy. They did however solidify my FND/PNES diagnosis. Moving forward I will be treated by an FND specialist at an FND clinic near me starting in September. I am looking forward to that as I have been experiencing more seizures lately and really struggle because of them, sometimes to the point of losing function of my legs.
✨ LUNGS/BREATHING
The last update I think I shared about my lungs was that my test results showed possible COPD. I have since had an X-ray and a specialized CT scan of my chest and I will be seeing my pulmonologist this upcoming Tuesday. We are still not sure what is going on as I still struggle with feeling like I can’t breathe. Also, while I was hospitalized last month my oxygen kept dipping into the low 80’s and at one point I coded and had nurses running into my room because my heart rate spiked and I apnea’d. This is obviously not normal so I’m hoping to have some answers when I see my provider next week.
✨ GI
Ya’ll. My GI issues are kicking my booty something fierce. Uhg. So I have been diagnosed with both functional vomiting syndrome and cyclic vomiting syndrome. And I don’t really have real answers as to what’s causing any of my issues. I’m constantly nauseous even though I’m on 2 anti-nausea medications every 4-6 hours plus an additional stomach cramping medication. It’s to the point where I’m finding it hard to eat and drink which I know is contributing to my chronic dehydration which of course worsens my POTS. There are some nights where I am too sick to take my nightly medication and that worsens my already severe bipolar disorder. I have an appointment scheduled in September as a follow-up from the colonoscopy I had done in March but I hate that I have to wait so long to be seen as these are the symptoms I had last year when I had my first cyclic vomiting episode that lasted 9 straight days. I was also in the hospital at the time. I’m kind of just trying to stay positive but it’s really a struggle to the point where I’m having to cancel appointments because of my episodes.
✨ BIPOLAR
Ya’ll…. I have been in an episode since January. I was hospitalized for mania in January and since then I have bounced between mania, hypomania, depression, and now a mixed episode. I have been seeing my psychiatrist every week adjusting medications and nothing is working. We are giving my medication another week or two before we decide to completely stop my medications and start new ones. This is incredibly overwhelming because I have already tried 90% of bipolar medications since being diagnosed in 2020 and nothing seems to help. At least, not for long. My bipolar is sadly treatment-resistant. And, in the past, while having medications adjusted, I usually had worsening symptoms and ended up being hospitalized for my safety. So I’m worried that could be around the corner. I’m truly so tired of having to live my life in extremes. It’s exhausting and so damaging in so many ways. This has been very hard for me and a major part of why I’ve been MIA.
✨ ARTHRITIS
I was diagnosed with JIA or juvenile idiopathic arthritis as a kid and haven’t seen anyone for the diagnosis since I was 16. My symptoms would come and go but over the last year, my symptoms have worsened and persisted. My joints swell often and are bruised and painful. My blood tests also show a lot of inflammation so I’m going to bring this up to my PCP next week to see if I can get back in to see a rheumatologist about my joint issues. This is more annoying than anything as my body always hurts and it interferes with my daily living.
✨ AUTOIMMUNE
I’m still struggling with my AIN (autoimmune neutropenia which causes me to be immunocompromised) as my levels seem to keep dropping as of late. However, I am now having abnormal platelet issues and a lot of my blood work has been trending in the wrong direction for the last month or so. This has been overwhelming as I just don’t feel well. Like ever.
✨ UNEXPLAINED WEIGHT GAIN
Lastly, this is more of a symptom but I have experienced unexplained rapid weight gain. In just under a year I’ve put on 70lbs, 10 of which I somehow put on in the last month. This is very bizarre as I am more active now than I was a year ago when I was literally bedbound, I exercise at PT twice a week, and my diet isn’t bad at all.
One reason for the rapid weight gain could be from all of the medications I am on for bipolar – as I take quite a few. But we are worried there may be something else underlying that has caused such drastic weight gain in such a short period of time.
✨ IN CONCLUSION
WOW. So if you’ve made it this far, THANKS! It’s a lot. Like a lot a lot. It’s insane to read it all and realize just how much I’m going through. Thankfully I am for the most part in good spirits. It’s hard. Every day is hard. I have at-least 5 appointments a week. And it’s been that way for as long as I can remember now. Next week I have 7 appointments. It’s all just very overwhelming and a lot to juggle but ya’ll, God is good and He is sustaining me. Idk how sometimes. Genuinely, this life is such a struggle. But somehow I’m still here. And for that I’m thankful.
