Usually when you are angry, you have a target, someone to complain about, focus your anger on, throw darts at their picture. I’m not so lucky. There’s no target when your angry at an illness. My husband has a chronic health condition. He’s had it for 10 years. For the longest time, we didn’t have a name for it. We went from doctor to doctor, specialist to specialist. Some just threw their hands up and never asked to see him again. So thought he was crazy or making it up. Others at least gave it a shot. What we repeatedly heard was, “Yes, we know you have something. These labs and tests results tell us there is something wrong. We just don’t have enough of the puzzle to figure it out.” “So I have to get sicker?” “Basically, yes. When there are more pieces, we will be able to figure it out.” Me – “So as he gets sicker while you figure it out, will you be able to reverse all of the things that happen to him?” ” We don’t know.” Let me tell you, that is not what you want to hear from a doctor.
So the hunt continued. We found a rheumatologist who dedicated herself to him and has gotten us to where we are today. She finally figured out that he has Sjogren’s syndrome. Sjogren’s syndrome is an auto immune condition that involves inflammation in the body. Now Sjogren’s isn’t that uncommon, but it is in men. It usually occurs in women in their 40s. He was in his 20s when the symptoms started. He didn’t have the traditions symptoms. Normal symptoms are dry eyes, dry mouth, inflammation in the tear ducts and saliva glands. His symptoms were muscle weakness, fatigue, pain. Along with those, he started having head pain, memory fog, dizziness. This led him to a neurologist which found spots on his brain on an MRI. More questions, less answers. Ok, it’s Sjogren’s but there is something else going on. We ended up at a specialist at Johns Hopkins. He is a genius, no really. He specializes in neurological rheumatology. More tests later, the good doctor found out my husband has Sjogren’s with Neurological and Central Nervous System complications. (That’s not the medical name, but it’s the name that you can understand.) Basically, when Sjogren’s attacks men, it gets all jiggy in there and has a party. The inflammation decided to enter his central nervous system and send the inflammation out to his body in nerve signals. It went to his brain. It went to his extremities. It set up shop and is having a party.
Since then, we’ve been on numerous meds, none slowed it. We have been put on IVIG and Cytoxan, no help. In fact, his body seems superhuman and his condition seems to get worse with each med. It’s like the cells said, “You thought that would work??? Now deal with this!” We currently just finished plasmapheresis and a 3rd round of Rituxan. He feels worse than ever.
With inflammation in the CNS, he has been having nerve damage for years. He has constant numbness, burning, and pain. He is much weaker and easily fatigued. This is a man who used to run marathons, who now gets winded walking up stairs. His skin is so sensitive to the touch, that clothes bother him. He just grumpy, who wouldn’t. He wants to play with the kids, doesn’t feel like it, but does it anyway because its important to make those memories with the kids. And he works. He’s old Polish stock; ‘if you’re still breathing, you’re still working.’ I think most people would have given up, but he just keeps going. I marvel everyday at what he does, how he pushes though the pain and the fatigue to get through his day.
Chronic Autoimmune conditions are hell for the patient, but the loved ones struggle too. I feel in an awkward situation most days. I can’t be mad at the drs. They are trying everything they’ve got. I can’t be mad at him. Look how much he does do. I’ve got no target, and I’ve got no reason to complain. I’m not the one dealing with this conditions day in and day out….
I’m still mad.