Last we spoke, I’d been newly diagnosed with Fibromyalgia, in and out of the ER, and coping with the intense flare that stress brought me. Since that time I’ve made it through the holidays, stayed out of the ER, and weaned off my fibromyalgia medication due to terrible side effects. I’m not really doing any better than I was. In fact, for the past two weeks, I’ve been almost entirely bedbound. We just know now that the ER can’t do anything for me.
It’s been tough. It’s been depressing. It’s been defeating. I’m not going to lie, I’ve cried a lot.
I’ve weaned off the Lyrica because it wasn’t doing much for my fibromyalgia symptoms and was causing a lot of added depression, anxiety, and vertigo. My doctors have officially decided to stop treating me with any additional prescriptions since I’ve had more trouble than luck with any of them. Although it is very frustrating to be medication resistant, I am grateful for doctors who are willing to take alternative routes when needed.
You may remember that I was referred to the center for functional medicine at Cleveland Clinic and put on a 6-month waiting list. Thankfully my doctor has connections with a doctor in Toledo who is heavily involved in the functional medicine center and has referred me to her. This means that I can see her and get straight into the Cleveland Clinic without a wait if she thinks that’s the best route or, better yet, receive the same level of treatment here in the area.
We’ve also found a lot of emotional trauma that is resurfacing and contributing to my depression and anxiety, so I’ve decided to try counseling again in the hopes of working through all of that in a healthy way.
As for my physical symptoms, my doctor says that my fibromyalgia is 100% active throughout my entire body. While you might think that just means pain (and it does include a lot of pain), it also includes a LOT of other symptoms including burning, nausea, spasms, anxiety, insomnia, and just all around misery. Honestly, before this, I always thought of fibromyalgia as just pain… I now know I was so very wrong.
My POTS symptoms are heavily active as well. I’m experiencing a great deal of blood pooling, near-syncope episodes, low blood pressure, and lots more. And the stress of it all has my Chronic Fatigue Syndrome flaring with adrenaline rushes, panic attacks, and extreme fatigue. My list of symptoms is extremely lengthy.
Basically, my body hates me. Or at least it feels like it. But I’m taking time to love it back in the hopes of winning it over eventually. Because body transplants aren’t a thing yet.
I’m doing my best to remain strong and continue fighting. I haven’t been good with being alone so my mom has been staying with me, which helps a great deal. And if you follow me on social media you’ll see I’ve been clinging to the Psalms for encouragement and peace. I’m in survival mode right now, and that’s okay. It’s what I need to do.
But being in survival mode means that I have to be extremely careful with my energy and my time. It means I might not respond to messages right away or answer phone calls, it means that I probably won’t be up for company, and it means I’ll take every bit of love and encouragement and prayers you send with utter gratefulness.
What’s going on with Rachel? If you follow my social media accounts you likely know that I’ve had a rough couple of months filled with ER trips and doctors appointments. Now that we’ve talked to my doctors fairly thoroughly I thought it was time for a health update.
Stress, Stress, Stress…
Right now my doctors are fairly confident that this flare is my body’s response to some major stressors. At the beginning of the year, I had started a medication for my POTS/NCS that ended up lowering my potassium and landing me in the ER with significant hypokalemia. As dramatic as it sounds, I thought I was dying. I wasn’t warned about the medication lowering my potassium so I wasn’t looking out for it and had never experienced anything like it before. All I knew was that my body was telling me that there was something seriously wrong. For the next several months we did thorough testing to ensure that the potassium drop didn’t do permanent damage to my heart since I’ve had significant chest pain ever since. Thankfully my heart is totally fine. Read more
Sometimes I wonder if doctors have a list of “illnesses” that they diagnose difficult people with just to pacify them; just to quiet those people that insist they don’t feel well even though their tests come back fine. Sometimes I wonder if there are illnesses that all doctors recognize as “fake,” but are given like sugar pills to patients deemed dull-minded attention seekers with wild imaginations.
It’s ridiculous to think this, I know. But after six years of being disbelieved about the symptoms you’ve lived with every day, it’s impossible for it not to affect the way you think about everything. It develops a mindset that is difficult to shake.
Many patients wait years for a diagnosis, bouncing from doctor to doctor, test to test, hoping and praying for answers. Illnesses like Dysautonomia are often misdiagnosed as a mental illness because, despite the patient’s complaints, nearly all of their tests come back within healthy ranges.
One of the greatest difficulties of chronic illness is the limbo between your symptoms presenting and receiving a full diagnosis. To suffer through this time without any answers is difficult enough, but to add to that the pain of doubt is like rubbing salt on an open wound. Read more
The limitations of chronic illness are many and are unique to each person. The realities of “I can’t” are much of what makes depression so common in those who are chronically ill. For me those I can’t’s feel like a weight tied to me, holding me back from things that everyone else takes for granted. While everyone else complains about their jobs, I see them going to work each week and find myself fighting discontentment. I can’t work right now. I can’t support myself. I can’t.
Saying “I can’t” may seem to go against all the chirpy, peppy, go-get-’em, reach-for-the-stars crap we’ve been fed since childhood, but there’s a lot of good in realizing and coming to terms with what can’t be done. It’s healthier to understand your limitations than to push until you burn out, right? Exceeding your physical limits isn’t an option when your body is already in distress. It’s a difficult reality that we face on a daily basis.
But for myself and many others with chronic illness, it doesn’t end there. We learn to re-evaluate and prioritize. The truth is that we can’t do what many others can, but that doesn’t mean we can’t do anything at all. There’s this ambition ingrained in us that doesn’t die, even when it’s crippled by frustration and depression. Maybe it’s the little kid in us that is only fueled by being told we can’t do something. Maybe it’s our human instinct to “do”. To create. To add something to this world. Whatever it is that inspires us, chronic illness is the obstacle that tells us it’s impossible; but it’s also the thing that forces us to think outside the box and make our own path. Read more
My husband and I have been married just under two years now and all I can say is that I’m so glad he didn’t marry me for my housekeeping abilities. It’s not that I don’t know how to clean, my mother made sure that wasn’t the case. It’s not even that I hate to clean, I honestly ache to just clean my home from top to bottom in a single day.
No, alas, it’s that chronic illness has a way of squashing every good intention with its never ending limitations. I live in a world of trade-offs and exaggerated consequences. I spend my days bargaining to get the most out of my energy, but my reward for cleaning is more fatigue and more pain.
If you’re in the same boat, you’re probably looking for a magical list that will impart to you a profound wisdom and result in an impeccable home. You can stop reading and go hire a maid. The truth is, if you’re chronically ill and cleaning your own home, your house isn’t going to be impeccable. Let’s just get that laughably unrealistic notion out of the way right now and, instead, go for something actually attainable.
How does the word “adequate” sound? Isn’t that just music to your perfectionist’s ears? No, but really. Let’s shoot for adequate. And the first keys to adequate housekeeping are all about your mindset: Read more