One Step Forward, Six Steps Back

Note: When I started this blog I never intended for it to become a forum for me to talk about Kim’s diseases. At the time I started it she hadn’t been diagnosed with Rheumatoid Autoimmune Disease yet. My plan when I started was to write about what was on my mind and what was important to me. For those who read me regularly, you realize it can be a mixed bag, but mostly what is important is Kim’s health and my personal walk with Jesus Christ and my struggles with faith. Today’s post is another post on Kim’s health. Hopefully, it will give those of you who don’t have RAD a glimpse into what life is like for those who do struggle with autoimmune diseases. With that in mind, please understand that I am not writing to garner sympathy or to make others feel sorry for us, but rather to hopefully continue to raise awareness about autoimmune diseases and RAD specifically.

Last Friday Kim had an appointment with her family doctor for a regular checkup and to bring him into the loop as far as what has been going on with Kim over the last six months since he last saw her. We are almost to the six month anniversary of Kim’s official diagnosis of RAD and while we were waiting to see the doctor on Friday Kim and I were reflecting on all that has happened with her health over that time period. In the last six months she has had no less than twelve different doctor’s appointment. That averages out to one every two weeks. For the first few months she had blood labs drawn weekly to check her counts and levels as we monitored the disease and how the medications interacted with her body. She has been poked, prodded, scoped, x-rayed, scanned, and submitted to other tests to check how the disease is affecting her. She has dealt with the side effects of medications, the nausea of taking methotrexate (Known as MTX. Chemotherapy, it is the workhorse drug of the RAD community.), the fatigue of the disease, the swelling and pain in her joints, and the frustration of not being able to do certain common tasks like opening a water bottle or the plastic bag inside a box of cookies or breaking down a cardboard box for recycling. She has dealt with the lows of not being able to squeeze toothpaste onto her toothbrush, or not being able to twist a doorknob to open a door, or not being able to cut her own food on her plate, but she has also experienced the joy of regaining all of those as her medications started to work. She has been diagnosed with a lung disease that is a extra-articular condition of her RAD. Through all of this she has never missed a day of work due to her RAD and we have learned to compromise at home. Or, as Kim stated last night,  I’ve added another job as I have taken on the brunt of the household duties such as laundry and cooking.

Recently, Kim tapered off her Prednisone for the second time. This time it went much better than the first and she was able to get completely off of it. For one week. She stopped on Friday, March 2 and started again last Friday, March 9. We noticed that when she got to the 5 mg a day level that a few of her symptoms started coming back, though not as bad as they had the last time. The symptoms increased as she tapered down to 2.5 mg a day and within a few days of her taking her last dose her pain had returned in her feet and hands and her breathing had worsened. This time we noticed something different as well. Her pinkie finger on her left hand was very painful and swollen. She’s never had problems with that finger before. That makes us wonder how effective the drugs have been as it appears as if though the disease has continued to attack her joints, including new ones, all while the Prednisone hid what was going on in her body. Something else to follow up with the doctor about.

Last week started with Kim seeing an ear, nose, and throat doctor to have her throat scoped as they checked to see if her RAD was attacking her larynx. The doctor was very knowledgeable about how RAD can cause some to lose their voice. He said while there is some irritation in her throat, it appears to be due to reflux (another symptom of autoimmune diseases) and not anything with her voice. We will be keeping a very close eye on that though as we know RAD can attack the larynx very quickly. As the ENT doctor did his examine he did have some concerns however with her thyroid and ordered labs tests to check and see if she has a thyroid autoimmune disease as well. The labs were drawn for that last week, but we haven’t heard back from the doctor yet. It wouldn’t surprise us as we know of hardly anyone who only has one autoimmune disease. They seem to come in multiples and since Kim already has two, adding a third wouldn’t be a shock.

We ended last week with an email from her rheumatologist and the visit to see her general practitioner. The rheumatologist emailed to have her cut back on her MTX as some of her blood counts were a little high and he also put her back on the Prednisone at 5 mg a day so that she can function day by day. The visit with her family doctor ended with him prescribing her four new medications to help with some of the various side effects of her diseases, like sleep aids, reflux, and low iron count. She also got her inhaled steroid that the pulmonologist had ordered to help treat her lung disease. She just started on that over the weekend so we will see how it goes.

So that’s what the last two weeks or so have brought. An apparent victory of her getting off the steroids only to see her go back on them plus adding several other medications. To be completely honest, there are times where dealing with the disease is incredibly wearying on both of us. I state that not looking for any sympathy or help. It is simply the truth. While she deals with the pain and fatigue that come with the disease, I struggle with the fatigue of researching, learning, and the simple fatigue of the emotional inconsistencies that come with coping with a debilitating disease. The highs of seeing the medications seem to work appear to be very distant when we are given a new lung disease diagnosis and six new medications in the course of two weeks. That, unfortunately, is life autoimmune.

With that all of that said, we continue to covet your prayers and we know that many of you are praying and we are extremely grateful. Many have offered to help us in anyway, but honestly, prayer is the best way. While we continue to fight and strive and raise awareness, and we certainly pray and seek for healing for Kim and for others with RAD, ultimately we rest in knowing that our Hope is not secured on anything here on earth. Our Hope rests in Jesus Christ and His finished work on Calvary. Because of His death and resurrection we know that one day we will say goodbye to these diseased and failing bodies as He welcomes us home. So while our prayer is for comfort and healing here, our Hope rests in an eternity with no more tears or pain. And that is good news worth repeating when bad news is all we seem to hear.

1 Comment

Filed under God, RAD

One response to “One Step Forward, Six Steps Back

  1. Pingback: A New Week, A New Med – RAD Update V | Bringing Me Back Home

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