He quickly agreed that I needed an MRI arthrogram, but also let the wind out of my sails when he said regardless of its findings, conservative treatment was the best bet for me. Man, what does a girl in Finland have to do to be rehabilitated? Every day I am still shocked and amazed that this happened to me. Why? How? I was just a normal person who exercised a bit too much, and now I live my life from the couch or being driven around to coffee shops or shopping malls. Okay, I also have a connective tissue disorder. BUT WHY CAN'T IT BE MANAGED? Why do I feel like a second class human-being when trying to get help for a problem that I didn't ask for?
The surgeon gave me a cortisone injection which initially caused me severe pain, but in the end... May was the best month i'd had in quite a while. The injection is completely worn off now, but It was pretty amazing.Since May the following things have happened in terms of treatment:
1. I saw a shoulder surgeon.
2. I post-poned my MRI arthrogram 2 times, but it's rescheduled for September 5th.
3. I was re-evaluated by a physical therapist who said he couldn't help me at the request of the Helsinki city planner.
4. I was re-evaluated by my local healthcare station by a physiotherapist who doesn't speak English and doesn't understand my condition. I'm not complaining really about the language because it's my fault that I don't speak Finnish properly, but after all this couldn't you make it a bit easier for me? She's the person responsible for writing my new rehabilitation plan for KELA. But Amie didn't you already have a rehab plan? Why, yes I did. But HUS made it and then trashed it when Kela said, " It doesn't make sense because i'm actually fine".
5. I have applied for demanding rehabilitation (in a facility) based on this estimation from my healthcare station. Still waiting for KELA to tell me that i'm fine.
6. I had some test results that showed my liver is inflamed.
7. I've had a ton of gastrointestinal problems.
8. My anemia is back, and definitely has a vengeance.
I feel really discouraged. More than usual. I'm not entirely sure what I am supposed to do now. I can't use my shoulder, almost everything I eat makes me sick, I can't sleep due to pain, and walking has become a disaster again. I've had a bit of a flare-up since I was evaluated by the physiotherapist at my health station. She tried neck traction, and I have been in pain ever since. That was about 3 weeks ago or so.
On a positive note, I did make it to a short holiday to Munich, Germany. I really feel like this was some type of miracle. Adrenaline meets a miracle. I patched myself up with heating pads, medications, and took it easy. My trip actually went okay. I was in some pain, but I made it. I think this also played a role in how i'm feeling now.
In addition, my fave physiotherapist has been on holiday all summer, and now he's back to clean up the huge mess that I am. I'm not sure what my future holds for us either. I've gotten somewhat better with him, but no major advancements. I credit him with my ability to function at all, and that says a lot. He's really amazing.
I'm still perplexed and confused about the state of my health. Sometimes, I feel like this is some sort of nightmare that I haven't woken up from! I truly cannot understand why the left side of my body has virtually given up. I'm so afraid the arthrogram won't give me any answers and that my body has just literally given up on ever working properly. If i'm in this much pain now, what will happen in 5-10 years? I'm really afraid. The longer this goes on, the more likely I think this may be my lot in life. I don't feel as positive as usual, just really devastated.
I'm expecting for KELA to deny me again. Although, I really and truly need this care. KELA doesn't care about my condition or pain. Which is unfortunate, because I really need their help. I know i'm not alone in this endeavor. There are so many of us scattered around Finland who are denied the care that we need based on someone's decision who just sees us as a name on a paper.
We all have rough bouts, and this is mine. I will continue trying to stay positive, and I urge anyone reading this to do the same. None of us asked for this burden of illness, but we have to remain faithful that will turn out the way they are meant to be. We cannot lose hope. And we can most definitely not stop fighting and advocating for our own care. Whatever you situation may be, keep on keeping on.
Until the next update!
Best wishes,
Amie
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