Category Archives: Family

The Hand of God – Part 2

After my last post it might have seemed like everything is going well, and I certainly don’t want to take away from all of the positives of Kim having a new rheumatologist. I also don’t want this to seem like the other shoe dropping, though it may be hard for me to accomplish that. The reality is that Kim is not doing well right now even though she has a great doctor. The infusion medication for her RD that she started last November, Orencia, has failed her. Whether her body ever responded or not we don’t know, but it’s become plainly evident that Orencia is not helping her. Her breathing and lung function have gotten worse, as have her pain, joint stiffness and swelling, fatigue, and her ability to function.

Her rheumatologist, Dr B, contacted her and recommended switching Kim to another infusion medication called Rituxan. We knew that was likely to be the next treatment option and have agreed to pursue it. She will get her first infusion next week and we would dearly covet your prayers for Kim and our family.

So, in light of this news and the title of these last two posts, where is the hand of God on Kim’s health right now? To be honest, there have been many times in the last few years where it “feels” like God is far away. When Kim’s health has been on a slow and steady decline for over the last two and a half years and when no treatment plan has helped, it’s hard at times to not question where God is. And so we simply fall. Not into despair or into self-pity, but into what we know about Him. We know that He is the same yesterday, today, and forever. We know that His love for Kim is infinite and that He will — for His glory and for our good — work all of our struggles out according to His perfect will. And we know that the very hands that moved people and calendars to get Kim a new doctor are currently holding her. That “under His wings” she is safely covered and protected in spite of what may come. We continue to trust in God’s goodness and to follow His hands wherever they lead.

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

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