Well, its been quite the week. Monday I thought would provide answers that would bring us closer to a diagnosis. To me the diagnosis is imperative in order to move forward with my life. Do I continue trying to work, can I continue to work, what aspects of my life need to change and ultimately what symptoms can we treat to reduce my pain, discomfort, seizures, etc.
Monday, Tuesday came and went Wednesday the pain management specialist called and basically everything was inconclusive. Lupus doesn't look likely however some necessary tests were left out that would be necessary. I have an appointment to see a rhuemetologist in a couple weeks. They did show equivocal (not positive) presence of recent exposure to the fungus that is Valley Fever....also means pretty much nothing. I will follow up with an infectious disease specialist Monday just to get cleared or minor treatment if required.
I have had two awful seizures in the past four days. My body was just barely starting to feel functional and I was hit with another at 7:30 last night. Every muscle in my body is screaming despite norco and pain meds. My ankle feels like its sprained from the unnatural forced twisting. Days like this - the doctors don't understand my pain level. The medications just aren't enough.
I have been told all these ridiculous things about causes. I have put up with being pushed around. I have been told don't cry when your having one even if the pain is excruciating. I have gone along with all of it. Last night seizing alone, I realized I was going to fall off the bed. Before I could I somehow rolled myself onto the floor. My foot now was kicking the bed frame and I couldn't stop. I screamed for help, tried to text Brett (who was outside). Finally Sean came in and found me and got Brett. In all this I decided I am not "accepting that this is OK". I am not OK having the 2-3 times a week completely uncontrolled. I am not OK with my current pain level I am expected to "tolerate". The doctors have to do something. I need to get something more than this.
I don't know whats next but something needs to change and very soon.
WOW- my heart sincerely goes out to you, I have had similar pain issues and frustrations with being told there is nothing wrong with me, and the lack of insurance to pursue it further- but your issues and pain level go beyond what I experienced am I truly sorry. Don't give up, we know our own bodies and we know when it isn't "normal". I hope with your persistence that you find the answers quickly and get what you need to cure the problem or the pain and symptoms! Maybe we will see you on the show "Mystery Diagnosis" sometime soon!
ReplyDeleteRockabelle - I am so sorry I have been negligent in responding. I threw caution to the wind and went to VLV15 despite it all - last week I was beat.
ReplyDeleteI just LOVE your name first off. Wonderful! Thank you so much for taking the time to read my words. I am so sorry to hear that you are facing your own challenges. I think its important that we don't judge whose are harder are worse. Pain and illness that affects our lives is difficult, challenging and even scary sometimes. We each have different struggles but are able to relate through those. I would love to learn more about your experiences. I find that just knowing I am not alone in the experiences is refreshing. Having it be someone that is also interested in pinup, rockabilly, all of it. Please keep in touch -themanhattanstorm@gmail. Best wishes XOXO