Category Archives: Life

When Bad News Is Good News

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.

Psalm 16:5-8
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.

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Filed under Blessings, God, Life, RD, Rheum

The Whirlwind

Most of you who have followed my blog at all have realized that my writing has slowed significantly. There are reasons for that. Since the beginning of spring we have been moving at  a non-stop pace and that doesn’t look like it will be slowing down until late fall.

The majority of our spring involved us going to baseball games, high school concerts, and other functions. But the biggest event was the graduation of our eldest son, Alex from high school. He graduated Summa Cum Laude and as a member of the National Honor Society and we couldn’t be more proud. Of course, what’s a graduation without a party? So we planned and prepared and called in the reinforcements. We knew that with Kim’s RD that she could not do any of the food prep, but she didn’t need to. She planned the menu and made lists and more lists about what to buy and where to get it. Her mom and sister came up the day before the party and made all of the food. My mom and several of our friends offered to make desserts and they did. Other friends helped by picking stuff up for us, helping set up, and then staying late to tear everything down and clean up. We are so very grateful to all of them and are blessed beyond measure by the kindness of our family and friends.

Almost immediately we moved onto college plans as Alex will be attending Wheaton College in Wheaton, Illinois this fall. So continues the planning of scheduling college physicals, filling out more and more paperwork, and providing yet another document needed to the finance office. It’s late June already and in just over two months we will be dropping him off at freshman orientation.

Our other two children, Caleb and Hannah, are keeping us busy as well. Caleb is playing American Legion baseball again this summer which involves several games a week. We try to make as many as we can. Hannah has started summer school as she can do a block health class in 15 days to free up a study hall for her freshman year at the high school. On top of that, both of them are involved in strength and speed camp in the early morning as they prepare for fall sports.

Kim is doing okay with all of this so far. She is doing what she can and listening to her body when it is telling her to stop. She planned ahead for the graduation party by taking off the week of and the week after the party. One to prepare, and one to recover. And she needed the week to recover. Her Rheumatoid Disease has been okay through most of the spring. No major setbacks or flares, but still we know the disease is there and active. She switched from Humira bi-weekly to Enbrel weekly a couple months ago and that has gone smoothly. She was able to eliminate one of her other medications for her RD which is good. She has been going to pain clinic and they had to change her pain medications since her body had developed a tolerance to her old one. Several tweaks in dosage and multiple visits to the pain clinic doctor now have her on a regime that is controlling her pain enough for her to function. This has been a double-edged sword for her this spring. Pain management is good, but we have seen yet again the progression of her disease as the pain limits her from doing some very basic tasks.

We did get some great news about Kim’s health though this spring! Her visit with her pulmonologist was good. Her lung function has not improved, but it didn’t get any worse either. He moved her next appointment off for an entire year!

Currently, the big news for Kim is that her rheumatologist is trying to get her off her prednisone again. She has been on prednisone since her diagnosis in October of 2011. We all know that long term use of prednisone, even at small doses, is not good for her body so we are willing to give it a try. She has tried twice before to taper off without success either time. She gets to a certain dosage and she simply can’t function below that dose. She started her latest taper the week after Alex’s graduation party. Supposedly, a few days of extra pain, stiffness, and swelling are expected until the body regulates itself. Unfortunately, that has not been the case so far. She’s a couple of weeks into the taper now and is still experiencing extra pain, stiffness, and swelling. We also can see and hear a noticeable decrease in her breathing as she tapers down. This is an extremely slow taper (1 mg per month) and so far it is not going well. Hard to tell if it’s just the prednisone or if she’s flaring or exactly what is going on.

The other big news we had this spring is that I have been invited to participate as an exhibitor in the Fine Furnishings Show in Milwaukee this October. The show will be held at the Harley Davidson Museum in downtown Milwaukee. This is something I have always dreamed of doing and it is a fantastic opportunity to show my work not only at a local level, but with national exposure as well. This means of course that I am spending every free moment I have building furniture for the show. I would love to have you follow along on my Facebook page, Neevel’s Fine Woodworking as I make pieces for both shows.

And that is a brief recap of our spring and early summer and our plans into fall. Thankful as always for the many blessings God provides to us. We continue to rest in Him.

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Filed under Blessings, Family, God, Life, RD, Rheum