Diagnosed: Trapped and Struggling

I think it may be time to share about what’s going on in my life right now and for the last 8+ months. A year ago, I was taking a health and wellness class toward my Public Health degree that required participation in a regimented exercise routine and healthy eating for the semester. Good things, right? Right. Maybe. I was weighed every 2 weeks at the blood bank while I was there to donate platelet/plasma and noticed that at every appointment, my weight had gone up by 2 pounds. By the end of the 14-week semester, I had 99.77% final grade and a mysterious extra 14 pounds. About a week after the semester ended, I woke up one morning with 30 extra pounds of fluid and a very distended and firm abdomen. For 2-3 weeks I thought I might be pregnant. Not being a skinny woman to begin with, it wouldn’t be all that unusual for a pregnancy to be undetected until it started to really show – gastrointestinal distress isn’t unusual in my life so nothing that happens in that department would have alerted me to anything new.

I had been off “the pill” for a year and had recently gotten off all my anxiety medication to minimize any unnecessary risk to a pregnancy. Per doctor’s recommendation, we were waiting things out until we knew more about Covid-19 before trying to conceive; our appointment to begin discussing family planning occurred in March 2020 as the pandemic was just really getting started. This left me disappointed but OK with the decision to wait a little longer. The notion that I might be pregnant months later brought on a whole slew of new emotions I hadn’t felt before. I thought maybe God was like, “Girl, you’re getting old. Let’s just do this, I got you.”  Nope. Not even close. A bazillion home tests and 2 tests at the doctor later… not pregnant.

My heart sunk.

The weeks and months came and went. The fluid retention continued to increase and spread to my entire body, head-to-toe, as did the pain and gradual loss of mobility. I noticed my skin changing, especially on my face – it began to feel like cheap fake leather. I’ve always been meticulous about taking care of my face, and then I lost control over my skin changes. The skin on my scalp, arms, hands, and legs joined the fun as well – stiffening, thickening, breaking out in painful rashes, sloughing skin randomly, growing mysterious bumps...  

So many doctors and specialists, so many tests… so many dead-ends. By the end of December, the fluid retention was up to 53 pounds with zero success to reduce it. The cardiologist diagnosed me with Orthostatic Hypotension (my blood pressure drops quickly when just simply standing still, as well as with any movement) which helped explain the dizzy spells and lightheadedness that I had also been experiencing. He handed me a pamphlet about Syncope and that was that. Ugh.

The fluid retention reached an all-time high of 75 pounds with the new year. I was having trouble sleeping in our bed – so much pain, trouble breathing – and nothing helped (e.g., extra pillows, elevation using a wedge, etc.). The end of January brought 3 big things:

1) A new (used, but new to us) couch with built-in recliners so I could keep my legs elevated during the day with greater ease while working from home. The recliner couch immediately became my new bed as well.

2) A diagnosis of Systemic Sclerosis/Scleroderma, a rare autoimmune disease that causes an overproduction of collagen in the body – it is progressive, incurable, and presents in a variety of unique ways for each person afflicted with it. It is commonly accompanied by one or more additional autoimmune diseases. Some people die a few years after diagnosis. Some people don’t. We don’t know enough information to have a prognosis in that department yet.

3) On Saturday, January 30^th, I started weekly doses of what I call “the poison.” My rheumatologist put me on low-dose chemotherapy (15 mg of Methotrexate) to suppress my immune system and hopefully get my body to stop attacking itself.

With the 3 big things that the end of January brought, I lost 6 pounds of the fluid build-up. I swear, the relief as slight as it was, was felt 100% from my calves. I felt a glimmer of hope – it was either a perk of the extra diligent elevation, or the chemo. A few weeks later, the fluid retention jetted back up past the previous high and settled at a new high of 80 pounds – accumulating in my thighs and hips as my first occurrence of pitting edema (as opposed to non-pitting edema). Suuuper helpful for ambulating – NOT! With every step I take to get to the bathroom and back, it feels like someone is trying to violently tear my legs out of my hip sockets.

I now use a bi-pap machine to help me breathe at night. Apparently, I stopped breathing 26 times an hour in my sleep and had low oxygen levels – that would explain my almost daily episodes of passing out while working and waking up 30 minutes to 4 hours later. On a good note, while my lung capacity is limited per the Pulmonology study that was done, the oxygen I do get in makes it to all the right places. Now I wake up several times a night to drink water for dry mouth issues, but I’m no longer falling asleep during the weekdays.  Speaking of dry mouth, that’s been a fun addition to the circus for the last few months, not just during the night due to the bi-pap machine. My eyes have also begun having trouble producing tears, causing pain, irritation, blurred, and double vision. I use gel eyedrops during the day, eye ointment (it is THICK) at night, and the ophthalmologist plugged the holes in my bottom lids with teeny tiny silicone plugs that stab me in the eyes if I look left or right without moving my head. Ouch! There’s a whole line of products to help with dry mouth and to increase saliva production – special toothpaste, mouthwash, gel, spray, lozenges… I have them all! Helpful? Meh. I’m not convinced, but they are a step above plain water. While I have not been diagnosed with Sjogren’s Syndrome yet, I suspect that may be what’s going on. A diagnosis is reliant on a lip biopsy. Owie. I’m good putting that off for a bit.

April 3^rd was the 10^th week of taking the poison… the 10^th week of hating Fridays because they just mean Saturday is coming with more poison. Hearing or reading “TGIF” or “Thank God It’s Friday” is followed by feelings of resentment as of late. I don’t mean to be so bitter, but this stuff really kicks my trash and leaves me exhausted, in pain, and feeling puny for days. I pray for the day I can look forward to weekends again. The week after the 10^th dose was not it, that’s for sure.

I had an appointment on April 6^th with my rheumatologist. She informed me that she presented my case to hundreds of rheumatologists around the world since the crazy excessive fluid retention and rapid weight gain is not something typically seen in Systemic Sclerosis/Scleroderma. She heard back from 2 (yeah, TWO) of the doctors – both who had worked with a case just like mine. JUST LIKE MINE! Fabulous! I’m a rare case with a rare disease… but not entirely unheard of. What provided help with their patients? More Methotrexate (the poison). Joy.  So on April 10^th, I started a new higher dose of 25 mg per week (10 mg more than my old dose). It’s too much to absorb at once, so I have to take half with lunch and half with dinner. Let me tell you, I was not prepared for the aftermath of this new dose. HOLY FRICKIN’ CRAP. All the ill effects of the past dosage (pain, malaise, drowsiness, general sick feeling, heaviness in limbs, etc.) multiplied by 5, plus an invasion of gravel trucks in my eyes, face itching and swelling, pounding headache, and the inability to tolerate light and sound. I spent the second half of last weekend with lights off, curtains closed, sounds off, and a hat over my eyes. It was horrible. Monday was really rough having to work on a computer all day (it was as dim as I could get it and zoomed in so I could at least make sense of things). I was spared from further intense eye agony by the fact that I have a pair of prescription sunglasses – they have been a Godsend this week.  I live in them now – don’t judge me.  I also live in pajamas day and night, and wear them to all doctor’s appointments, breaking my personal “no pajamas in public” rule. Dang it. And don't be fooled, they aren't cute pajamas. Nope.

I’ve had a plethora of “new lows” along the way. The first one occurred months ago when I discovered I couldn’t put on my left sock. Yes, just the left one.  Fast forward to now, if you put a pile of clothes next to me, the only thing I can put on without help is a shirt. Even then, I usually require assistance getting my hair unstuck from the neck hole. It’s mortifying and I feel so useless. Hopeless, some days… most days. Showering is a whole different ordeal – agonizing pain, panic attacks – they terrify me. How did life come to this? I’m sure my neighbors think I’ve lost my mind (and perhaps I have). Every time I have to leave home for a medical appointment, my husband has to take time off work because I can’t drive right now thanks to all this. Then he spends time helping me get ready, convincing me that I do have to go to the appointment, coaxing me out the door, dealing with me as I freak out over getting in the car (it’s about as painful and terrifying as taking a shower), and supporting me even when I’m giving up.

Next up is some lymphedema physical therapies in hopes that some of the fluid retention can be relieved, then there’s talk of sending me out-of-state to a specialized Scleroderma Clinic. I don’t know how long I’ll be continuing on the chemo, but that’s still a thing too. Speaking of, I’m starting to fade from the first dose (it's poison day) – the exhaustion is setting in, the headache, my arms are getting weak… who the heck turned up the heat in our house???

While I can identify things I’m grateful for in life right now, like being able to work from home full-time and having an incredibly kind husband, I can’t find the silver lining in all this yet. I’m usually really good at that, but not this time – and that is bothering me a lot.

And I’m scared. I’m scared that the stress all the fluid retention is putting on my body will kill me before any relief is figured out. And God knows no medical providers, as good as they may be, have approached finding a solution with the amount of aggressiveness it deserves… the amount I deserve. I’m growing tired. I’m trapped in this body, on this recliner, in this house. The world is opening back up as Covid-19 concerns calm down, winter is fading away, the sun is coming out… and I’m still trapped inside, away from everything.