Pain is bad this morning. Woke up at 9, by 9:30 I was so done with the day. Intense pain in shoulders to my wrists, and down my legs. Have you ever dislocated your arm from its socket? That is what it feels like. Without the dislocating. Tremors and weakness are bad today too. Took everything I could to make it to the kitchen and make some tea and collapse back into bed.
Took my last donated pain pill a minute ago. I was holding out trying not to take it, but this is ridiculous.
FINALLY I get to see a Neurologist tomorrow after waiting many many months. I have so much to say and ask, I feel as if I need an entire day with a Neurologist. I am nervous too.. I do not know how long my allotted time slot is and I have a whole lot of things to address, and likely booking another appointment after tomorrows will be another few months. And my printer died.... I had planned on printing a brief summary of my issues, my questions, my med list etc. My physical writing skills are horrible now, seriously... A kindergartners handwriting is better than mine due to One of the many joys of MS.
Meeting with my geneticist about my bad news. Positive for BRCA1 cancer gene, he will discuss my options. Boobs chopped off, reproductive organs out is recommended procedure to reduce my very high risk of cancer now. Reproductive organs would be first surgery priority. But I have questions... Surgeons will not operate on those taking steroids (me). I need all my doctors to be on board here, I feel so scatterbrained.
Seeing my primary care doctor, and reiterating any information I get from my Neurologist and Geneticist as well as my huge list of things to address.
Ok, pain pill is starting to work. THANK GOODNESS!
They do make me overly chatty, but I am just gonna roll with it.. The more stuff I get out of my head and somewhat tangible and readable the better. I have a "pain clinic" appointment sometime in December. My primary will not give me any pain medication while I wait for the Lyrica manufacturer to give me an answer.
Doctors are recently so severely scrutinized and penalized for prescribing narcotic type pain medication to their patients, that they just won't out of fear. Even people who TRULY need it, cannot get the help that they need. I need a doctor with balls so to speak.
Cracking down too harshly on doctors is counterproductive. While in theory they are trying to prevent a black market due to people getting a script and selling the pills... They are also creating a new black market. People like me who actually truly need pain management and cannot get help through their doctors. I,personally think that I am the perfect candidate for fast acting pain medication until I can start taking the non narcotic Lyrica. Through desperation and severe pain, who can I turn to to get the medication I need to get through some days? Well... Not my doctor.
Thus, a new black market is born. Not junkies, or people looking to deal drugs, but people in severe pain who just need help. It is a very real struggle for many with chronic illnesses. It's a constant fight. I wish I could let my doctors feel my pain, let them live with it for a day and then ask again if pain management is still not ideal.
Ok I have ranted enough! My arms feel so much better than they did, the pain is still there, its always there.... But right now it is at a manageable point and not spiraling out of control.
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