The Hand of God – Part 1

It’s been a while, but in my last post I stated that after our visit with Dr Jack our chief priority was finding a new rheumatologist for Kim. We started that search immediately in October of last year. We had one doctor at the top of our list, Dr B. A member of the Rheum community sees Dr B and had recommended that we try to get her to take Kim as a patient. We had also seen her name in a magazine article listing Dr B as one of the top three rheumatologists in the state.

We sent a letter to Dr B’s office asking that she consider taking Kim as a patient. After going through a few phone call tag sessions the office got back to us and told us that Dr B was not taking patients. Not ones to let a “no” stand in our way, we petitioned them to reconsider. We also asked Kim’s pulmonologist to call Dr B and ask for her to consider seeing Kim since her lung involvement was getting worse. He agreed to contact her. After making a few more phone calls to the office, they once again refused to see her. At this time they told us that Kim would have to stay with Dr Jack because it was the rheumatology clinic’s policy that patients only get two rheumatologists for as long as they need a rheumatologist. Yes. That’s correct. Their policy was that Kim had seen two rheumatologists already since being diagnosed in October of 2011 and that she could not switch to any other doctor. We never knew about this policy and we never got a say in the two doctors that she had. They were simply assigned to her based upon our location and her insurance. Here we were willing to pay extra to travel to another insurance tier to see a better rheumatologist and they wouldn’t allow us to.

At this time, we asked our friend Liz if she felt comfortable asking her rheumatologist, Dr H, if she would take Kim on as a patient. Liz agreed and since she had an appointment the next week she was able to talk with her in person. Dr H agreed to take Kim as a patient so we finally had a new rheumatologist.

At this time I called to schedule an appointment with Dr H and the office manager of the clinic told me that the “two doctor rule” still applied and that even though Dr H had agreed to see Kim we would not be allowed to switch. More phone calls and some outright begging and the office manager finally agreed to bend the rule and let Kim make the switch. She would get the first available appointment with Dr H which was April 8, almost five months away. We took it.

Meanwhile, Kim had started her Orencia infusions. She was able to get through her infusions with no side effects which was a huge blessing. However, she kept getting viral infections due to her lung involvement and her weakened immune system. Because of the infections, she wasn’t able to get the infusions on the proper schedule. She was struggling due to being off of the Enbrel and the Orencia not yet working in her system. Add in a few cases of bronchitis with a compromised immune system and RD and she was struggling physically.

On Friday, December 13, Kim and I were just finishing up some grocery shopping around 6 that evening. My phone rang with a number that I didn’t recognize. I answered it and it was the office manager from the clinic. She said that she had an opening available for Kim on March 10. We jumped at the chance to move her appointment up by a month. The manager then said, “Just to confirm, you’ll be seeing Dr B on March 10.” We were confused. “But Dr B wasn’t taking any new patients. Do you mean Dr H?” No, it was Dr B, the doctor we had originally wanted to see. Somehow Kim’s pulmonologist had spoken to Dr B and explained what was going on with Kim’s RD and her lungs. Based on that conversation, Dr B agreed to take her as a patient. Kim then asked the manager if she should continue with her Orencia infusions and what to do with her other medications and care as she wouldn’t be seen yet for almost four months. The manager asked to put her on hold. She came back just a few minutes later and said that she had called Dr B on her cell phone and that she would see Kim on Monday, December 31 at 8 AM before office hours. From being told that we would not be allowed to switch doctors to having an appointment with the exact doctor that we wanted in less than two weeks. This was nothing short of a miracle. When I was relating what had happened to a friend, she said, “You just saw the hand of God move people.” And she was right.

Kim’s appointment was nothing short of amazing. A doctor who cared and was concerned. Every single thing that the other doctors had been insisting were in Kim’s head, Dr B acknowledged were part of her RD. Kim’s first two rheumatologists had stated that they saw no swelling in any of Kim’s joints and would disregard her claims of pain. Dr B diagnosed swelling in almost every location — fingers, wrists, elbows, toes, feet, and knees — and confirmed that of course there was pain because her body was under attack. She then looked at Kim and said, “You have a very aggressive form of RD. Therefore you need to be treated very aggressively.” Yes. Thank you! This is what we have been asking for since 2011! She spent an hour and thirty minutes with us going over Kim’s history, her symptoms, and a plan for treatment. It was a joyfully emotional experience to finally have our voices heard. Since that appointment, Dr B has contacted Kim on several occasions to check on how she is feeling, to go over treatment plans, and to explain further treatment plans.

I must confess that in the weeks of fighting for new care and feeling like the system is against everything we are trying to do that doubt creeps in and I wonder some times what God is doing. But my friend was right. We did see the hand of God move events, calendars, and people. Yet the truth is that even if that wouldn’t have happened, God was still there. He’s been here with us in the last two years of really bad doctor care and He’s here in this season of good care. His consistency doesn’t change, but my faithless eyes often fail to see Him.

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.

Netflix, Heat Patches, Family, and Friends

Hello blog. It’s good to see you again!

A new work schedule has kept me away from the keyboard, but an unscheduled day off, a rainy morning, and a blog carnival prompt has me writing.

About a month ago, Kelly asked the question on her blog, “How do you keep the disease from taking over?” It’s a great question and one that I thought of quite a bit when I first read her post. A gentle nudging tweet from her yesterday reminded me to write and participate in her latest blog carnival. So here are a few of the things (a non-inclusive list) that help Kim and our family deal with rheumatoid disease. How do we — our family — keep the disease from taking over?

First off, thank you, thank you, thank you, Netflix. I know it might seem funny, but it’s also very true. I don’t what this would be like for Kim without Netflix streaming. Kim is not a big reader and she doesn’t find a distraction from her pain from browsing the internet either. But streaming TV shows and movies on demand? That is extremely helpful! See there are days that come without warning where Kim literally does not have the energy to leave the bed. Sometimes those days run into multiple consecutive days and that is when Netflix is so helpful. I seriously can’t imagine dealing with RD without it.

Next is blankets, gloves, and Thermacare heat patches. Our kids have always been involved in sports. More specifically, outdoor sports. In Wisconsin. Which means that we can and have left for baseball games when it was 60 degrees outside only to finish the last inning with a temperature of 22. So we know we need to be prepared. We are not willing to let RD dictate to us whether Kim can watch the kids participate in sports or not. Therefore, the back of our van is loaded up with a chair that Kim can sit in for several hours (bleachers are out of the question without an excellent quality bleacher seat), about 6 blankets, gloves, and these lovely heat patches. Kim places one of these heat patches across her shoulders when we know we will be sitting out in a cold game. They help to keep her warm which prevents her from tightening up her neck and shoulder muscles from the cold. That it turn helps to keep her pain levels lower.

Our family also helps us from letting the disease take over. Often, Kim’s RD has her in bed much more than she would like. This is not in any way easy for the woman who would prefer to be busy working, cleaning, and gardening 18 hours every day, but I am seeing the benefits of these forced moments of rest. Almost every night when it’s time for me to go to bed I have to kick one or two or all three of our teen-aged children out of our room. Daily, they lay next to her and talk about their lives and Kim gets to listen and communicate with them. What mother wouldn’t love to have time to talk with children without distractions and life’s busyness interfering? What a tremendous gift that has been given to her because of RD!

Lastly, our friends help in more ways than they realize. Not a week goes by without multiple people asking us how she is feeling. And then they tell us they are praying for us. Words cannot fully express what that means to us. Their concern for our family has done multiple things, but probably nothing that is more important than the binding of our hearts together with theirs through friendship. There is something unspeakably priceless that comes with knowing that someone cares so much for us that they regularly take time out of their day in order to pray for us. It’s one thing to see one’s own hurts and pain and to ask God for help. But to care so deeply for another that their suffering becomes more significant than your own needs speaks volumes. The Psalms tell us to “cast your cares on the Lord”, but our friends have made our cares their own and for that we are deeply grateful.

One other thing our friends do for us is that they give us hope. When we are frustrated by doctor’s visits and poor treatment from medical professionals, our friends are frustrated too. This gives me incredible hope. Why? Because our friends get it. They understand that there are huge issues with how the medical community currently “sees” patients with RD. They share in our disgust when a doctor tells Kim her pain is “subjective”. (More about that in a future post.) But how does our friends “getting it” give me hope? Simple. Because if they understand it, then others can too. And as we continue to educate, fight for awareness, and show people the realities about RD we move another step closer to a cure. Each new person that gains a better understanding of what RD really is helps us take one more step in that direction. And each step helps us all keep the disease from taking over.

This post was written for RA Warrior’s RA Will Not Win blog carnival. Please check out the other great posts written for this carnival at RA Will Not Win.