Blessed in the Midst of Adversity

I can't believe that its been a year since I blogged. When I started blogging it was my intention to blog once a month . . . to put out all of my feelings and thoughts to keep my friends and family up on what was going on. Obviously that didn't happen. So what has caused me to finally blog again . . . I'm not quite sure. Part of it is because people have been asking me whats been going on and what's new with me. And well of course to some degree it has to be theraputic. My diseases . . . hmmm well, there are diseases and there are ailments and issues. It's just one big furious rollercoaster. Rhupus Syndrome (Rheumatoid Arthritis and Lupus) Sjogren's Syndrome Blood Clot in left leg (over 1 foot long) A growth in my neck between the thyroid and voice box . . . which means sometimes I sound like a dude and sometimes I can't talk Spinal & Thoracic Epidural Lipomatosis (caused by Lupus and accelerated by steroids) One thing that I've never discussed is that the doctors have been concerned about my brain function. For over 6 months I've been dealing with oxygen deprevation to my eyes and brain. It was more than frightening to think that I could lose my intellect and brain function. I play a lot of Words with Friends and Ruzzle because they make me use my eyes and my brain simultaneously. There has been no explanation . . . but believe it or not, the spinal issue may be the cause. Its amazing how the human body is connected and functions. As a result I will be on blood thinners the rest of my life. The doctor indicated that I am now prone to clots and it's too dangerous not to be on thinners. And the spinal issue is crazy scary . . . the report listed the words "calcification" and "complete obliteration." I am probably going to need surgery but you know what I've been in such pain for so long that I am o.k. with that because it can only help me at this point. As of March 1st I'm unemployed. And that is probably the scariest thing that is happening right now. No income is just beyond what I'm able to handle right now . . . at least it feels that way. Fortunately, I qualify for unemployment and it takes 3 weeks but eventually that will come. That means I won't lose my home. I'll be a little late but I won't lose my home and that's all that matters. Its just strange not having a job. Although it is a HUGE blessing because I was struggling everyday to get up, get dressed and go to work. I spent the day in so much pain that often I would be weeping at my desk. And to be honest, not having a job for a few months is probably the very best thing for me because I will be able to rest, heal and rehab. If I have surgery for my back it will be about 10 weeks in a rehab facility. If I was working everyday I would not have any income while I was rehabing but with unemployment I can rehab and actually still look for a job. I've been looking for work-from-home jobs because honestly there is no way I can stay in the house and not work for months at a time . . . that is just not going to happen. Hershey Medical has a fund to help people like me, who lost their health insurance and are unemployed to help pay for outstanding medical bills. They also have incredible social workers who have spent so much time explaining things to me and helping me fill out form after form. Of course this process takes about 21 days. It feels like everything takes a few weeks. And it takes so long to recover from even a few weeks of being behind on bills. But I do honestly see all the good . . . i can't explain the amount of pain I am in every day from my spinal issue. I can't stand for more than a few minutes and can't walk further than 10 or 15 yards. I don't usually express my pain . . . and when I'm at the hospital the doctors are never quite sure how much pain I'm in. I don't usually express the pain I'm in . . . but the truth is I'm always in pain - always. The degree of pain is always different but there is always some . . . I'm not good at asking for help. And by help I mean anything . . . but that time is so over. I'm going to have to ask and accept it as it comes. Its hard to admit that there are things you just can't do for yourself. I don't like it when people see me in wheelchairs or even the scooter at Giant. It is me admitting that I am helpless . . . but I am learing to be o.k. with it basically because the alternative is to be in the kind of pain that even percocet can't help. Today, I ran into a friend going into a store, my niece had run into the store for her sister, and it made me so sad. She just drove right up to the store, got out of her car, walked in, got what she wanted and walked out. She just walked - she didn't hobble and wasn't in pain and didn't need anyone to go in for her. I get so emotional when I see people walking or moving . . . I pray that one day I will be that way again - but most days it seems like an impossibility. And I am exceptionally private. I know you think I'm not . . . especially since I blog but remember for every 1 thing that someone tells you, there are 10 things you will never know. People tell you what they want you to know and are extremely good at not telling you what they don't want you to know . . . but I'm going to have to drop that and allow people into my house and into my life. I must stop being so private that not even my closest friends know everything. And its so hard to even think about . . . A while ago a friend who does web pages suggested that I get a web page together so people could donate and help me when I needed it. I said "No" because I couldn't imagine I'd ever be in a situation where I needed help but it is now obvious to me that I never know what new illness will pop up or when I will need help. So that page will be coming up soon. So, I'm going to reach out to friends to help with cleaning and laundry. I've somehow managed to bruise my back muscles and so its difficult to do anything for myself right now. And whereas I've never been the neatest person . . . I have cleaning issues. So don't be surprised by the call to come help . . . or the ask to add you to the list for a few hours here or there. So, yeah, I'm pretty sure that I still have things to say but you know what, my leg is swelling and starting to throb and my back is killing me so I'm going to go take some tramadol and call it a night. Tomorrow it could be so much better. Tomorrow will be somehow better.