GUEST POST-My Husband
I asked my husband Randy to write a “guest piece” for me on marriage and autoimmune disease. I realize that it affects the whole family, not just those with the condition. I often hear from other autoimmune sufferers, of their struggles dealing with friends and family who do not understand the illness or even believe the person is ill. I have also experienced this, and it is very hurtful.
There is so much attention put on the person who is sick. With appointments, medication, diet and lifestyle changes to deal with, often the support person, in my case my husband, gets forgotten. For almost 5 years I tried to mask what was going on, mainly because I was being told nothing was wrong. After obvious changes in my health, reality set in. I realized that I needed him more than ever. I was going to the doctor every few days in the beginning. It then spread out to every 2 weeks. I needed help going up our stairs at home. I needed help in and out of the car. I could not get out of a chair or out of the bathtub on my own. There was also a period of excruciating pain that pain meds did not touch. He wanted to help me but at the time, the situation felt hopeless. I recall back in 2016, 2 days before we were going to leave to drive to Florida, I needed to get my routine blood work done. My new FMD wanted to run a few extra tests to monitor me. The doctors checked my CPK often, but he wanted to check my Troponin T as well. My CPK was 1075 which is high, but this is what I had been maintaining for a while, therefore I thought no big deal. My Troponin T however came back at 0.100. Normal is 0.010. I drove home and a half hour later I had the hospital calling me to get back immediately, my blood work showed I was having a heart attack! I casually called Randy at work to tell him I was going to have to drive back to the hospital because of the phone call I had just received. He immediately drove home and took me himself. It was the same day that Carrie Fisher had died of a heart attack, only I did not know this, and he was afraid to tell me on the drive down. After 5 hours in the hospital being hooked up to everything possible, it was determined I had a very healthy heart. My immune system attacks my muscles and therefore I have very high enzymes. The heart is a muscle, and when a 50-year-old woman comes in with such elevated blood work, I guess they must cross their T’s and dot their I’s. We did leave for Florida, and Randy would not let me drive at all because he was still so shaken up. He really takes care of me!
Thanks, Randy, for being my support and my soulmate.
By: Randy Rupp
Being the spouse or significant other of someone who battles multiple autoimmune disorders has its challenges. Years ago, I remember watching an episode of “House” which featured the brilliant Doctor House, always cracking the most difficult cases. The term autoimmune came up frequently and I must admit, I had no idea what it even was. Little did I know at the time that I would someday become well educated.
As Tracy has pointed out, it took a few years to figure out what was going on. I remember driving her to her liver biopsy, kind of thinking there is really nothing seriously wrong. And if there was something wrong, the doctors can fix it. They can fix anything, right? And of course, they could not find anything conclusive, so I just assumed this was a temporary condition.
Fast forward a few years and things took a turn for the worst quickly. One of the things I remember the most was her weight loss before we knew something was wrong. “Gee Randy I lost a couple of pounds again this week.” Initially it was presented with a smile, but in time we both realized weight loss without trying is bad. Another is the distance she was hitting the golf ball. The weight loss was due to the loss of muscle mass and she just could not hit it like she did in the past. Another warning was she would make the comment “my legs feel stupid”. Again, it was due to lack of strength and they would not move as her mind was telling them to do. I bring this up as a “pay attention folks” to what your body is telling you. Every month, day, hour, or minute you seek medical advice and change your lifestyle helps.
Personally, I have tried to be as supportive as possible. I also want to say it is OK for the significant other to have their weak moments. It is not easy to see the one you are in love with fight for their lives. I remember about 6 months after her diagnosis I was seeing our general practitioner, someone we both had a lot of respect for. Before he even started my physical, he asked about Tracy. After I gave him some detail, he then asked how I was doing. It hit me like a ton of bricks. I am not sick, but at that point I realized I hurt as well. And in a polite way he was telling me that this is serious, I should maybe not be handling it well. I fought back tears and of course told him I was OK. I remember in the car for the hour ride home having a pretty good cry, realizing that my wife really was sick.
I am very close to my wife, we are going on 35 years of marriage. Any of you who have followed her or continue to do so moving forward will realize she is one of the strongest willed persons you will ever come across. She NEVER compromises on what she eats! You will also learn that diet and other lifestyle changes is what has given her a new lease on life. As I type this, she is playing golf for the 5th day straight. Yes, it is not as easy as it used to be, but she feels better more often than she feels poorly. I want to tell anyone who will listen that there is hope.
I have recently admitted to Tracy that I sometimes forget she is sick because she does so well. This of course can be good and bad. Obviously good because of how she handles the disease. But it is wrong to forget or ignore because she battles every day, and I want to be right there with her. So, my advice is to go above and beyond in your support, be a good listener. Have faith in the process but above all know GOD is in control.
To Tracy, plain and simple, I love you. You are my everything.