Autoimmune Truths

Yesterday was one of those days where my fingers were so swollen I was making continuous typos. I sat in a meeting to present about the #WhenIBecameFree project. It was with the Juneau County Economic Development Corporation. Attending the meeting with me was one of the survivors, Kelli. I had her go with because I wanted her to speak about an offshoot from the project, Kelli's Haven.

During the presentation I highlighted the negative impact domestic violence and sexual assault has on the local economy and how it touches just about every aspect of our community from home, school, church and beyond. Thankfully, those present understood.

I believe the meeting went well- the 15 minutes I was told I would have turned into an hour of basically a roundtable discussion with some positive opportunities opening up.

Someone asked me to write my name and cell number on a piece of paper. Those damn swollen fingers made that task hard - typing is easier than wrapping my hand around a pen. I was embarrassed when they were unable to read what I wrote.

As I explained about the swollen fingers I sat there wondering if the swelling of my parotid gland was showing. I've kept my hair long to cover it, and most times I am successful, but yesterday I was flaring and I knew it was more than likely was obvious. I absolutely hate it. It is from having Sjogrens, an autoimmune disorder that often accompanies Rheumatoid.
It took courage to take this photo last night 

I must be out of my mind in taking this one-
In my day to day world, I work too hard to hide what is seen in this photo. 

I am working on getting insurance, something I haven't had in a long while. When I was working full time I couldn't afford the premiums once the boys had moved away, and now that I am not working a regular job and only doing side jobs and this project, I will qualify (hopefully) for some medical benefits.

Right now I feel like I am living a damned if I do, damned if I don't life. I now understand why my father slipped into a depression when he was diagnosed with Rheumatoid and could no longer work. He was in his 40's, a big strong man -or, so, everyone thought. It weighed heavily on his mind that he was considered disabled. He was so worried about what society thought of him, "a man in his prime should be working and providing," is what he would say. He knew on the outside he appeared healthy but what people didn't know was in the mornings it took him hours to loosen up to be able to walk down the stairs from his bedroom down to our family room where he spent most of his day reading, watching television, or when his hands would allow, drawing.

Society didn't see his ankles and knees swollen three times the size they should be. Society didn't see all the medications he was on nor how when the autoimmune fatigue hit he would fall asleep at the table or in his chair. Society didn't see how the Rheumatoid hit his heart and other organs and society didn't see the excruciating pain he had to even get out of a chair and walk to the bathroom.

He was so worried about what society whispered about that he drank when he shouldn't have been drinking at all but it was the only way he could numb those worries. All of that fed a depression that one day led to a full-fledged nervous breakdown and 30 days in Old Orchard Hospital when he was just 50 years old, the age I am now.

With what I've been going through, behind closed doors, I completely understand why my father fell into that dark hole. Dealing with the chronic pain of a progressive disorder it is hard, at times, to see positives.  It is a good thing I am not much of a drinker and I am thankful that the #WhenIBecameFree project is giving me something to wake up to and for right now.

There are only a few close friends who know about my current, true, status - and I think they don't even realize full impact because I do hide a lot, more than people would ever know. It is a habit that is not healthy but to keep with a life of breaking cycles I have to face that so my children know that should they have that lucky Woywod DNA (sarcasm) that they should reach out rather than hide in isolation and fall down that deep well of depression because of health issues.

So yes, as soon as I am approved I am hauling my stubborn ass to a doctor and getting in to see a specialist because nothing I am doing is working like it once did.

CBD oil is helping with sleeping, something that has been long overdue. Some days it helps with the swelling in my fingers. But, like my father, it takes me a long time just to move in the morning before my joints loosen up from the Rheumatoid. My scoliosis is getting worse. I cannot keep up with the house and it is just me. There are days I cannot bend over to pick something off the floor. Walking down the front stairs of my home can be a very difficult task on some mornings. Since falling on my hip twice last winter, I am almost always walking with a painful limp. When I do speak at events, I need to sit because the pain of standing is too much to bear, even standing in the line at a checkout can become excruciating - I have to rest my right leg up on the cart to even out the twist in my spine. I avoid cooking because standing at the stove too long or at the counter to cut vegetables and prep everything, hurts. Some days are better than others and I cherish those breaks.

Outside of my world at home, I am exceptional at hiding the pain I am feeling and the worries weighing heavily on my mind.

Back when I did have insurance I had a bone scan performed on me and I found out that I have damage in most of my joints. I lit up like a Christmas tree. The answer to all of that was to be placed on so much medication I couldn't function even though I had to as then I still had my boys at home. I eventually went the natural route just so I could work. When I lost my coverage, I stayed on the all natural route - well, I guess that time has finally caught up with me.

I'll admit it - I am scared. I hate seeing my fingers disfigure before my eyes. I know that if I don't do something soon, typing will become near to impossible. I also know my organs will get hit with this shit, if they already haven't been.  I am too young to feel this damn old.

At least I can work on the project. I can listen to the survivors, record what they say and still type out their stories. It is taking longer and longer to complete some of those tasks, but my fingers are somewhat holding out. Also, working on the project allows me to nap when that autoimmune fatigue hits - I hate that brick wall.

As I move through this transition, I am trying very hard to keep a positive frame of mind. I know the work I am doing is creating change. I know I am trying and not giving up and now, yes, I am putting my health first and trying to get it under control.

I just hope everything falls into place in the time frame that it needs to or else I am in for one hell of a plot twist.

I also know there are more than likely people who have nothing better to do with their time than wonder why someone who looks healthy at first glance and can do this project, isn't working. But, unlike my father, I am not going to allow their toxic chatter and superiority complexes and judgments feed my insecurities.  I refuse to allow what happened to him, happen to me. He was a good man and didn't deserve the cards dealt to him. I have goals that need my energy and focus - like, seeing a doctor and getting into a Rheumatologist, selling my house, finishing the project and moving down to be by my boys in Memphis. That is the best medicine there is - family. Right now, I need an extra dose.

To my fellow autoimmune warriors- we have to tell our stories, much like the survivors I am working with in the  #WhenIBecameFree project are doing, we need to educate the general population on all the things that are happening behind closed doors and tend to the feed cycles that can get out of control. The very cycles that then impact all the rest of society in ways we do not always awknowledge.

I don't know about you, but I am sick and tired of all the whispers, the judgments and knee-jerk reactions stemming from ignorance. Maybe that is the empath in me meeting the activist I tend to be, I just feel if we started being open and honest about our lives with one another while actively listening, we may be able to create that world filled with the peace so many of us dream about and pray for ....

Yes, I can be a dreamer.......


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