Lighthouses represent beacons of hope.

Friday, July 1, 2016

I now have a secondary diagnosis........Fibromyalgia.

I let my blog go the past year or more, mainly because I just got sick and tired of being sick, AND tired. And also thinking and talking about it. I now only visit my Facebook group page occasionally. I told them I no longer want to be reminded about my illness on a daily basis. Unfortunately, my illness reminds me anyway. I decided to start blogging again for a couple of reasons. First of all, I want to get out of my own head and put the "sick" part of me up on a shelf. An article I read suggests to keep a diary of how I am feeling day to day. I then thought about my neglected blog here online. Maybe my writing may inspire or help another man facing chronic illness, to not feel so isolated.
I have tried very hard to not enable my disease to define me. Yet, it is has. It is like a poltergeist that dictates almost every part of my life now. I was reading about autoimmune disorders online, and an article suggested to keep a diary. First to just have a way to release the never ending presence of chronic illness from my head, but to also keep a record of my daily life. As the title of this post states, I was diagnosed a few months ago with an additional autoimmune disorder. Fibromyalgia. An additional autoimmune disorder, on top of APS. Great!..., just great. Just when I was so relieved that my Docs have been able to keep my APS under control and stay out of the hospital. I started having some really odd pain symptoms last fall. I would wake up feeling even more body and joint aches than I have ever had. The way I felt when I used to get the flu every year. Over a few months, it just got worse and continued to escalate. I finally called my Rheumatologist who has been the doctor who I credit the most for getting my APS under control. She thinks outside the box. In my opinion she is brilliant. She started me on Chemo infusions of the drug Rituxan starting in 2013. I think I've done 4 or 5 rounds, or four week infusion rounds over the past few years. I luckily tolerated the drug as good as you can expect to. Also oral immune-suppression drugs over this same time frame. I almost didn't survive my disease in 2012, so I decided to be open to everything she thought was a good game plan. 
So back to the title of my original post about Fibromyalgia. Before I ramble enough to bore you into a nap, I will wrap this up. I am trying oral meds, to try and get this new problem under control. My pain is getting worse by the day. Literally. I wake up with pain meds and muscle relaxers, with my jug of water on my nightstand. When I wake up I can literally NOT move. My whole body is petrified, and it is the pain that wakes me up. Usually way before my alarm. Sometimes 4am, even if I got to bed late on a weekend night at 2am. It takes a good 5 to 10 minutes to move enough to get propped up to get my pills down. Some mornings I just can't take it once again, and the release is with a good cry. Don't get me wrong, I'm not looking for sympathy. Sometimes I just wonder, is this what I have to look forward to every morning for the rest of my life? God, I pray not. And I actually do pray. God please help me, I don't know how much more I can take. My thoughts take over. I have a rope and rafters in the garage. I have an older Honda without air-bags, I think as I see a semi-approaching on my 2-lane road home. A head-on would be fast and over with quick. I could always step out in front of a city bus that always goes too fast to stop. 
But then I think of my wife who would be destroyed, and my dog Rainy who I spoiled and adores me. I am sure my son and and his wife would suffer too. I also think about how it was for me, when my Father took his life with a pistol in his mouth 14 years ago. I was destroyed as well as my wife. That experience takes care of that selfish option. But I do get now why he did it. He was in horrific pain from intestinal problems that he couldn't get any answers for. But he let go before we could get him an answer. I now understand his suffering, and what can drive a person to go that far.
In conclusion, I would like to open this forum up to ALL men with ANY autoimmune diseases. They are all related, just as the issues we all deal with, and suffer with. I hope you will join me. -Peace.

Wednesday, June 22, 2016

The Resurrection of me

Hello, and my sincerely apology to those who may have followed my blog. I took a break, a long...... break from the daily thoughts of focusing on APS. I broke the Facebook leash, and only visit once a month if that. Broke the daily focus of my FB page, the private APS-FB page, and this blog. I decided one day, I no longer wanted to think about my disease on a daily basis. I had to take back my life this disease robbed from me. The only way I could do that, is to live life without a daily reminder of the devastation APS has done to my life. It took way too much control of my life the past 15 years, and I had to make ME the focus of life again. Not the monkey on my back, with the name APS. And in my case CAPS. Another tier of this disease. Luckily not as common, but even more catastrophic. Hence the letters C.A.P.S......I will try to get back here and see if there are any followers. There are some great older posts from many men, if you dig into the archives. I think the link is at the bottom right of the page. Sincerely, -Carson.