Men with Autoimmune or ANY Chronic Illness

Lighthouses represent beacons of hope.

Monday, May 29, 2017

Welcome Men, to my new format. Chronic Illness, the common factor, no matter what it is.

I am changing my blog to be more inclusive. I wanted to open it to ALL men who deal with Chronic illness. The specific details of each or our illnesses are varied, but the fall-out of chronic illness is a common thread. Loss of income. Loss of relationships. Loss of self-esteem. Then there are positives. Finding what you are made of. Really being specific about what is important in your life. What can you accomplish with the limited amount of energy and in my case, also brain power. I would like to invite women on a limited basis. Some men don't want to be on the computer. They don't feel it would help to reach out. If your man is one of these, post and bring this blog to his attention. Be his advocate. My wife Patty is my biggest advocate, and she also deals with her own health problems. This is not the life we had planned for our late 50's, and heading into retirement. And WHEN can retirement happen, with the CO$T of health insurance and endless co pays. We are on a mission to build a small house. If will have to be very simple and no-frills, because we can't afford much. We are on a mission. This house will be built if it is the last thing we get accomplished on the planet !  It can't be a "Tiny house" because we need everything on one floor. No climbing stairs or ladders in this household !!.....Share you life, goals and dreams. Even share your struggles and letdowns. We have all experienced them. -Peace in sharing, -Carson.

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.
-Carson.