It’s been too long since I’ve written and much too long without an update about Kim’s health. The summer and fall were crazy busy with the kids involved in baseball, football, swimming, and going to college. Much less all that we tried to add to the mix. Yet we made it through this far without going crazy. A lot has happened with Kim’s Rheumatoid Disease (RD) since I last wrote and we’d like to let you know what’s been going on over the last few months.
In early summer Kim noticed that she had a couple of small bumps just under the surface of the skin on the top of her feet that were becoming excruciatingly painful. Her feet have always been painful, but they were growing increasingly so besides just the bumps on her feet. She saw her doctor and he had some x-rays taken in June. Unfortunately the x-rays didn’t show anything and the doctor had no answer to the increased pain in her feet or the bumps that were developing.
Summer also saw us trying once again to get Kim off of her prednisone. We don’t like the weight gain it has caused or the potential long term side effects that come from being on prednisone for years. Unfortunately, even on an incredibly slow taper, we once again realized that until her RD is better managed she will need to stay on it as she simply cannot function without it.
As summer moved into fall Kim continued the steady loss of function that she’s been on since before her diagnosis. Slowly, over the weeks and months it is apparent that her disease remains active despite her switch to Enbrel. It’s not something you notice from one day to another, but when you look back over the months the steady decline is clear as there is less and less she can do. Her pain continued to increase over late summer as she noticed that besides her hands and feet, new joints like her elbows, wrists, knees, and her hips were being affected. It also became apparent that her lung disease still seemed to be effecting her quite a bit. We also noticed that the bumps on her feet were getting large enough to be seen rather than just felt. In church one Sunday Kim nudged me and pointed at her sandaled feet. It was the first time we realized that the fourth and fifth toes on both feet had started rotating outward. In just a matter of weeks, her pinky toes on both feet had rotated almost to the point where you couldn’t see the toenail when looking straight down at them. We scheduled an appointment with a podiatrist and added more things to the “need to talk about” list for her next appointment with her rheumatologist.
Kim and I went together to go see her rheumatologist at the end of September. We had a lot to talk with him about and wanted to push strongly for Kim going on an infusion to treat her RD more aggressively. Unfortunately, our meeting with DR Jack (Not his real name. It’s just short for the term I now call him.) did not go well. Kim went through the list of new symptoms that she was experiencing. He disregarded all of them and tried to tell us that her pain, fatigue, etc were simply side effects of some of her meds or were just in her head. When we discussed treating her more aggressively to get her off the prednisone he looked at Kim and said, “You need to take responsibility for your weight gain. It’s not the prednisone, it’s because you are eating too much and not taking care of yourself.” Yes, that’s a direct quote. No, Kim does not eat too much. Yes, she doesn’t exercise because she can’t because of her disease. Kim then asked about her toes rotating and he said, “That’s not your arthritis. It’s because you’re getting old.” Apparently forty-two is now old and everyone’s feet do this when they get into their forties. Also, I believe at this time I should be commended for not punching him. As soon as we can we will be finding a new rheumatologist though this will require us to move to a different tier and pay higher deductibles with our insurance.
The week after Kim’s appointment with Dr Jack she went to see the podiatrist. He explained that the bumps on her feet were because her feet are starting to deform. He prescribed orthotics which he hoped would slow down the damage being done to her feet. He also looked at the x-rays that had been taken back in June by the other doctor. He noticed on the x-rays something that the other doctors had missed. The fifth toes on both feet showed minor joint erosion. Seriously, never have we been so happy to hear bad news! Joint erosion is bad, but finally, after two years, we have actual proof that her RD is very active even though her SED rates and inflammation markers have always been low.
Surprisingly, Dr Jack’s office called and said if we wanted to that Kim could start on the infusion drug Orencia. I have no doubt that the only reason that he prescribed it is simply to try and appease us. He has never taken Kim’s lung disease as being anything serious or important so when I was researching Orencia and noticed that it can cause lung problems we contacted the pulmonologist to get his opinion. Prior to agreeing to start the Orencia the pulmonologist had Kim do another pulmonary function test two weeks ago since she hadn’t had one done since April. Unfortunately, we received more bad news. Her lung disease has gotten worse. The PFT showed that her lung function has significantly declined since April. We followed up the PFT with a CT scan of her lungs. For the first time her CT shows clearly that she has a chronic obstructive pulmonary disease (COPD). In spite of her COPD worsening the pulmonologist sees no need in doing any further testing at this time. He did give his okay for her to start the Orencia which she will start next week. We move forward with this knowing that she could get better, but there’s also a chance it might not help and could make things worse. We’re willing to take the risk and hope for the best rather than sitting by doing nothing.
So some of you might be wondering how we are “doing” with all of this. Honestly, we are doing well. We stay focused on each day and don’t concern ourselves with the “what ifs” of the future. We have a fantastic group of friends and family supporting us. We have received gifts, meals, and most importantly, prayer as we have walked each step of this trial. In the midst of all of this we continue to have peace that our sovereign God is holding us exactly where He wants us and there is no better place to be. We thank you for your continued prayers and support.
5 The Lord is my chosen portion and my cup;
you hold my lot.
6 The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.
7 I bless the Lord who gives me counsel;
in the night also my heart instructs me.
8 I have set the Lord always before me;
because he is at my right hand, I shall not be shaken.