Today’s post is part three in a four-part series about my recent health journey. What started out as one post, morphed into an impromptu series. If you want to read them in sequence you can find Part 1 here and Part 2 here.
In the fall of 2014 I went through my usual fall depression, except several months later, the realization hit, that I hadn’t bounced back like usual. In fact, I was falling deeper into depression and my stress levels were at the screaming point. I had an impending sense of doom. I knew I felt horrible and had such extreme fatigue that many days getting out of bed was just too much. Crying seemed like a good option much of the time. I didn’t want to go anywhere or do anything. I felt guilty for all the things I wasn’t doing and all the people I thought I was letting down. I was afraid to go to the doctor because I was afraid I’d find out I was going to die. I didn’t want to die; I wanted to live. But, I wanted to live well, not tired and cranky.
The stretch of time between Thanksgiving and Christmas was especially stressful for me, and I ended up with lower back pain so severe I could barely get around. When it didn’t go away, I knew I needed to see a doctor. My husband went with me and between the two of us, we managed to tell him all the symptoms I had been having. He immediately started ordering blood work and sent me for an MRI. Thankfully my back got better, and the MRI only showed mild to moderate Osteoarthritis. But, the blood work showed some possible Autoimmune issues, so I was sent to a Rheumatologist, thus beginning a several month journey that led to a diagnosis of Fibromyalgia, and eventually Mixed Connective Tissue Disease (MCTD) in August of 2015.
I went into denial for a couple of months, and the depression continued. On the one hand, it was a relief to know that all my symptoms had a reason, and I wasn’t a hypochondriac or lazy. On the other hand, to know that your body is attacking you and a simple nap won’t cure you, is disconcerting to say the least. About the time I was starting to make peace with the MCTD and decided that I should just stay away from researching the disease on the internet (too many scary possibilities), I started having more than my usual shortness of breath. Because of the MCTD, there was a possibility that I could be developing Pulmonary Hypertension. To me, this would almost be like hearing a death sentence as it can be very aggressive and depending on how far advanced can significantly shorten your lifespan.
My doctor felt that a CT scan of my lungs was in order as well as an echocardiogram and a pulmonary function test. The CT and the Echocardiogram were both relatively standard. The CT showed a possible enlargement of my thyroid and a nodule, so I had to have an ultrasound, which showed that I did, in fact, have three nodules, one of which was larger than the standard and required a biopsy. The results came back benign, no sign of cancer. I am very Thankful and praising God for that piece of good news. He is good. But, I need to say, if the diagnosis had been cancer, he would still be good. I had already told him I’d still praise him if I had to go through cancer on top of everything else. I’m just thankful that I don’t have to fight that journey.
The echocardiogram showed mild pulmonary hypertension so next on my journey was a visit to a cardiologist who seemed to think, based on my weight, that my findings were not too unusual. He wants to follow-up in a year. I am trusting that the numbers will be better in a year and not worse as that would not be good. There is also the possibility that the lung function is a result of the pneumonia I had back in 2011 and not the MCTD. It is crucial going forward to keep watch as I don’t want worsening symptoms. Also, the cardiologist seemed to think I should have a sleep study to rule out sleep apnea, so that is next on the medical to do list that seems to keep growing. Have I mentioned yet that I am so over Doctor appointments?
When I saw my Rheumatologist in August she started mentioning medications, but I didn’t want to start new drugs, and she said we’d wait on the bloodwork. When she called me a couple of weeks later to tell me that she was officially diagnosing MCTD, she wanted me to start on Hydroxychloroquine (Plaquenil), which is an anti-malaria drug. It is supposed to build up my immune system and will help with the pain somewhat. It should also help lower my inflammation. It is easily tolerated, but can cause damage to the retina, so I will have to have my eyes examined often to make sure there is no damage. So far, it seems to be helping. After a couple of months on the medication, I noticed that I was having a few more good energy days and less pain. I go back in February to have everything tested again. So far, I’m not showing any major symptoms of the overlap diseases, other than the mild pulmonary hypertension, extreme fatigue, achy joints and a tendency for my fingers and toes to be cold and feel numb at times. The goal is to get the disease in remission. If we can accomplish that, then my chances of complications from the disease are lower. Prayer request.
The MCTD still wipes me out some days. The achy joints and muscles that go with both the MCTD and Fibromyalgia slow me down. I’m learning that naps are sometimes necessary, and when my body has had enough, I have to respect that. I can’t just push through the fatigue as that could cause a major flare-up and make my symptoms worse. I never know until I wake up what kind of day it’s going to be. I may have a good day and even feel energetic. I may go to bed feeling pretty good, only to wake up in pain and so tired I can’t imagine getting up yet.
Some days the effort to get a shower is about all the energy I have. Many days the thought of preparing dinner and doing the dishes is more than I can handle, so we eat take-out way too often. When I cook, I try to cook enough for leftovers or prepare soup we can eat on a few times.
I say no to a lot of things. Not because I want to be anti-social (well a little of that could be my introversion) but because I simply do not always feel like getting out, or being around people. I imagine cooking family dinners, or having friends over, but that doesn’t often happen because it takes too much energy. At times I will be puttering around the house doing simple tasks such as laundry and poof, just like that, I’m done for the day. I usually have two to three hours before the energy gives way. If I time everything just right and get a nap, then some days I can have two energy spurts.
If I take care of myself and stay on a schedule, then I think it can all be very manageable. However, in addition, to self-care, I’m also my Dad’s support for my mom who has Alzheimer’s. If you know anything at all about Alzheimer’s, then you know that there is nothing routine. Even in good health, my mom was not a person that could be predicted by her routine. So, I have to allow for her needs, which means some days I take care of her, and I rest and everything else gets shoved aside. I realize that my priorities will have to change. I further realize that I can only travel this journey in God’s strength. And, I need the prayer support of friends and family.
I share this with you because I needed to see it all in writing to know how I’m dealing with the process and possibly to make it real. I share it so that those who know me and are around me can understand what I’m going through – you can read this and then we don’t have to talk about it so much. JK, sort of 🙂
Maybe, too, it will help you understand the world of silent diseases a little better. To most people I look well and I’m sure there are times I sit one out or don’t show up and it seems like I’m just lazy or anti-social. The truth is I may be in such deep fatigue or pain that I can’t fathom being on my feet another moment; it is possible that quiet and rest is the best thing for me. I can’t plan ahead well and guarantee that I’ll be ok on any given day. There have been many times I plan for an event and when it arrives it is just too overwhelming. So, I tend to wing it most days and not plan too far ahead.
I am not complaining, although some days I do fall into that temptation. And although some days my faith wavers, I am trusting God because I know he is faithful. He is the one who stands beside me, and he is the one who will sustain me. He is my buckler.
Moving forward will be a learning curve and I’m sure there will be gifts to unwrap in the process.
Moving forward in grace,