Wednesday, July 20, 2011

Notes From The Confusion

What do you tell someone when they ask how you are during a long illness that many people don't believe in in the first place? What do you tell someone when they ask how someone you love who is in that situation is doing? How do you explain something that has no exact known cause and no known cure? Something that causes a myriad of symptoms including depression and lots of pain.

My husband has had several health issues for the past two years. He had his gall bladder out in 2009 and was also diagnosed with hemochromatosis of the liver at that time. (Basically, he has too much iron in his blood.) Then depression hit along with muscle and joint pain over his entire body. A diagnosis of fibromyalgia soon followed. Here we are, two years plus in, and still no end in sight. He regularly sees his GP plus three specialists, with a fourth one soon starting. (I'm making him an appointment with a pain clinic.) He is also starting a second round of physical therapy that we are having to fight tooth and nail to get done, even though he did so much better during the first round.

Don't get me wrong, some things are better. The liver issue has really improved. For three months, he had to have a pint of blood taken every week. Now he's down to every three months. That might even get better, but ever three months is a major improvement.

And the stomach issues he had before and after he had the gall bladder removed have greatly improved. He can pretty much eat what he wants, although I do try to not give him many iron-rich foods for obvious reasons. Most days he even has a decent appetite, although he still has days when he doesn't want to eat anything at all.

The pain is the worst part. He hurts all over most of the time. Trips to the doctor's office two miles away are torturous, and don't get me started on the ones to doctors in Linville or Asheville (23 miles and 52 miles away). He feels every little bump in the road, and those of you who live up here know how these roads are.

Of course there are also medications. Many medications. All you can do is treat the symptoms and each doctor works with their specialty, and they all have their list of meds they start with and work through. So many pills.

Fibromyalgia is a real disorder which causes pain, fatigue, sleeplessness, concentration problems.....etc. The biggest problem is that some people, and even some doctors, don't believe it's real. I wish those people could be in my husband's shoes for just one day. I wish they could feel the way he feels for even one hour. They would change their minds very fast.


Vicki Lane said...

What a nightmare -- I will hold both of you in my heart with best hopes for an improvement in the situation.

susanbellnc said...

Thanks Vicki. It's been a long road with not only the illnesses but have mercy the paperwork. Sheesh. You can't do anything any more without some sort of red tape.

But, my friends online and right here keep me going, and I hold on to every little improvement.