Category: mood swings

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Disability update: Genetics appointment, pain management, pain, oh my!

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In High School, I learned that for me to get stuff accomplished, I Need To Do Lists, color-coded or numbered by priority: Otherwise everything is absolute chaos. Yesterday I made a to-do list and got most of it completed: 
I called the genetics doctor to do the genetics testing and find out more about my Ehlers Danlos Syndrome: what type I have, what symptoms of that type, etc.
 I had been waiting to hear back from them. I went to my GP (general physician) in August 2020 to get a referral, they finally sent the referral in Oct or November, and I had still not heard back from the genetics dr office to get an appointment set up. I called and the referral was never uploaded into the computer so I had to call my GP to ask them to refax the referral, but instead of having to wait for that, they went ahead and got all my file info and set an appointment to get me in the books; won’t be until August (unless someone cancels or reschedules, I am on a waitlist.) 
In other news, I am down to 3 pain pills left and my pain management doctor appointment isn’t until the 29th of this month! I called to find out if there was any possible way to either give me another half refill to tide me over until the appointment or to move my appointment up: I was shot down for both! I have 60 ct of tramadol per script- however, since I was completely out of my 60 at my last appointment- they had mentioned that they were going to up my count to 120 pills per bottle-but forgot to do that, I see the doctor every 2 months, and my dosage on my bottle says “take 1-2 every 4-6 hours as needed. Max dosage 8 daily;” On a BAD pain day, I take 6; On a good day, I only take 1. On a great (Miraculous rare day) I take 0. I was completely out on my last appointment on 1/28 (so they were filled that afternoon,) that 60 pills lasted me 20 days till 2/17. 2/17 lasted me until 3/11 with 3 left that I will now have to hide in a spot for absolute emergencies until my appointment on 3/29. The next 17 days will be a test of patience, nerves, and will power, I will have to hope and pray that Tylenol and my spasm medications (Baclofen) and (Gabapentin) will be enough, However: If I lose patience and become “Short with anyone,” I am apologizing now ahead of time. Please bear with me and realize I do not mean it, I am in pain and therefore my nerves are already on edge. 
prayers appreciated. 

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disability journey: Broken rods – facing my parents and such…

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 As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed. 

I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well. 

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disability Journey: Thought of the day- Medications and side effects…

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 thought of the day…8/10/2020

like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)

so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.

oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.

guess the saying is true, “Idle time is the devil’s playground.”