The ugly side of chronic illness is all the unexpected things that happen. My journey took a sharp curve off the cliff this January when I couldn’t get well. 2 back to back MOHS surgery. For those that do not know what that is – is surgical removal of skin cancer – they surgically take out an area larger then the cancer in hopes to have clean margins – meaning they got all that nasty bugger!!! I was put on an antibiotic for 10 days as a precaution because I am an Autoimmune Patient and thanks to all the wonderful drugs I have to take to stand upright 1st surgery went well. Small area over my eyebrow. No biggie. Sure…lets do the second one the following week. This one was the larger, more aggressive one on my shoulder. It bled like a stuck pig. No lie. It took a few tries to get a clear margin but all you can do is have patients in this situation. Got home and I had a huge blood clot where it had pulled all the stitches out. Great – trying to look like Frankenstein or I was in a really fun bar fight. Not sue which….maybe shark bite….mmmmm possibilities are endless.
Once that was over I started developing Vasculitis. Yes….well, why not add another Autoimmune Disease to my play list. So Rheum sent me to Derm. Derm sent me to Rheum. One wanted a biopsy, the other said no. So do you know what happened? Nothing. 60 mg of Prednisone for a week with a taper down to 20 mg in 3 weeks. Oh joy – let me just try to look like Violet from Willie Wonka….. Yesssssssssssssssssssssssssssss….this is how Prednisone makes me feel…..well sometimes. The other way is I am going snap someones head off and eat it – or burst into flames…. not sure which….
So then the Flu hit, then Bronchitis, then Pneumonia…..then the never ending RA Flare….then the headaches that were mind crushing.
Cue in super hero music as Remicade was approved. So my cute 4 hour infusion turned into 4 hours at the hospital and then spending the next 3-6 days trying to recover from it.
Doctor doesn’t seem too concerned about it. Na…its ok to be projectile vomiting for 2-3 days and having a migraine where I honestly feel like I must be having a stroke or a brain tumor or can I please just get someone with a 2×4 to slap my head – surely that will help the pain. Every 2 weeks for the first few doses then monthly. I must have lost my mind to WANT TO DO THIS!!!!!
Now its July….been out of work since January. I have short term disability through work. What an awesome experience that has been proving that I am sick. Why yes little nurse sitting at a desk with your big rubber stamp that says DENIED – I am sick. (this rant is for another post)
My primary care doctor has turned into my biggest cheerleader. I don’t want Disability. I want to work. I want to do whatever I need to go to get back to work.
Since I stopped working – our family has suffered incredibly. We lost our house, all our furnishings…..lived in a hotel for a bit. Was denied for Food Stamps, emergency housing, well to put it blunt – we were denied any help from any organization. Political Rant here – skip if you might get offended – but honey….I have been working since I was 15. Last year I was working 2 full time jobs and now – I am a couch ranger, surfing the web for a new movie or tv show. But I, a citizen can’t help our family. So we lost everything. Starting all over. Its heartbreaking. My husband, kids, are great – they stand by my side – cheer me one – but it gets damn right depressing. I didn’t choose this life for our family. At one point in the past few months I thought that if I moved back to Orlando to be nearer more doctors and have options for my healthcare, then my family wouldn’t suffer so. But that wasn’t the right answer either.
We have an incredible rental house – I was blessed with some people who helped us get some furniture. Its still a long way from feeling like home – but my landlord who lives next to us – is a blessing. He has some health issues and his wife is a hospice nurse. They get what we went through and took us in. Before that one of my dear friends took on our whole family and opened up her doors and provided us a place to sleep to get things working for this rental house.
My primary care has been very worried about my migraines and how they are increasing and where….he sent me to the Mayo Clinic (this will be another post too). After a few days there in Jacksonville, FL I felt better – not because he had some magic wand – well you can call it what you want – but HOPE is a huge thing. When you don’t have hope you have despair. You have depression, anxiety and a whole lot more ugly words.
When you start to believe in hope, it opens up more doors. Its like when you first light a camp fire, it takes work. The fire starts slowly and builds gradually. I can take a deep breath and feel better. Being a mom and being able to help provide for your kids is heartbreaking. I think it bothers me a hell of lot more then it does the kids.
Depression & Anxiety are like the drunk uncle that doesn’t want to leave my couch. Its a struggle. I just want to drag them out of the house to the trash and wave my wand and say Skat – begone you….
Back to the Mayo Clinic next week. I am sure I will have a few more visits before we have some clear direction. Right now Rheum and Neuro are fighting over my meds. Neruo wants to stay on Prednisoe and Rheum needs me off to evaluation my joints better.
Next week when I go back to the Mayo Clinic I am going to make a trip to Disney to reward my oldest Ashley for stepping in to try to fill my shoes when I couldn’t. Her birthday always fall during the weekend we have to go to Birmingham for cheer. So this tip – girls trip – I need to sprinkle some Disney Magic in her life…… She is the best kid ever.
So where to go from here? I just want to feel better to work. To help provide for my family. Sure our house doesn’t have a lot of furniture. But I know what I do have – a great group of friends who have been there trying to help in some way. I have 3 really cool kids who even though they are teens or older, they still love mom hugs. And not last ….Tim my husband. He doesn’t talk much about this kind of stuff….but I saw it for a brief minute at the Mayo Clinic – his sense of desperation, frustration and love for me -to want to see me better.
The purpose of this post is not for sympathy. Its my therpapy. Its my way to get out in a creative way how I feel about this journey I ddint ask to go on.
Ok guys – all for now – more later….