My Mom and Step Dad picked me up yesterday morning to go to the Walk in clinic to see if anything could have been overlooked in my blood work 2 years ago. I guess there is only 1 Walk in Clinic left in my town on Thursdays though, it was full and not accepting more patients. So we drove to the next town to find one there. So, if you live in my town and are one of the 45,000 Nova Scotians without a family doctor, you have 1 office to go to & it's usually full. People could go to the hospital to be seen, but it's not open all of the time & it should be used for emergencies only when it is open.
I do have a family doctor. My followers know my history with her, it's complicated. I did make an appointment in September with her though. I have November 13th scheduled.
My mom didn't want to wait that long now that I have problems in both legs and can barely do anything without being extremely high on marijuana, even then, I look uncomfortable to say the least. My Mother wanted another opinion and results. She doesn't want me to 'end up in a wheelchair' is what she said to the doctor. I can feel her desperation too and it has to be so hard from a mother's perspective. I want this to go away for her and my family, so they can have me back too.
So, we get to the next town's Walk in and into a waiting room with a new doctor that has never met me before. My mom did not want me to mention CRPS because she is hoping there is something else that could be causing the pain. Something that someone in Nova Scotia can help us with.
I do as mom says about everything else, but I had to mention CRPS. I knew a physical examination was necessary and the doctor needed to know before touching me. She didn't know what it was though. I can still feel her fingers in my hips the next morning. Why? I have no idea but I assume it's because I haven't been touched like that in almost 3 years. That sounds highly inappropriate, I don't mean it that way. When a person has CRPS, you can't touch them with heavy or cold hands. You can lightly touch if necessary, but don't grab in to feel the shape of my hip bones while asking me to put all of my weight on one leg. Both legs are on fire and she put gloves on her freezing hands to do the same to my calf and knees.
That sounds so dramatic to anyone who doesn't know what CRPS is, but I know a few patients that are cringing right now remembering their own experiences..
CRPS is rated 42 of 50 on the McGill Pain Index, higher than childbirth, amputation of digit, non terminal cancer and anything else on the index. One of it's symptoms is Allodynia or Hyperalgesia, the sense of extreme pain from non painful experiences, like my own hair falling on my arm or a sock trying to cover my freezing feet. Anything touching me hurts. Sounds & lights can trigger it too.
So it was not a comfortable examination, but in the circumstances it was necessary. I went there for a blood work requisition and x-ray on hips. If my hips are bad, they would cause a few of the symptoms in my leg. I'm not playing my own doctor here, I'm just listening to my mom or letting her do the talking for me.
I'm glad she did just that too. The doctor wouldn't shake my hand and continued to focus on "complex pain disease" dates and times of 1 symptom. I continued to ask to focus on the things in my blood work that was supposed to be discussed with me 2 years ago with my family doctor, but never were. At the time, we were focused and drained with medical paperwork needed for work and finances (that never went through) along with CRPS diagnosis and finding a pain specialist offering certain treatments.
I wanted this doctor to focus on the things that have been on the back burner for a few years. My hips dislocate when I walk, causing cracks in my knees and shocks of pain. It's actually been going on for years now that I think about it (but I never can when the time is right). I also want to discuss 2 things from the blood work: Low B12 and High Platelet Counts. Mom was a nurse in her past life, I am convinced. She has been asking me to look into these things for months now and I continued to get worse waiting for my treatment plans to resume or restart or find a new doctor, whatever the hell is happening there.
The intense fire, color and temperature changes, swelling and inability to put pressure on my feet or legs is new to me since March in the right and the beginning of last month for my left (it's been a month already?). In May and June, I was treated by one pain specialist with BioPhoton laser therapy for the CRPS in my right leg. She referred me to the new pain clinic for weekly Lidocaine Infusions. I had one on August 10th and the nurse went on maternity leave early. I have been waiting for my second infusion with no estimated time for new specialists to resume. It's traveling and I have no pain specialist. There is nothing a general family doctor can do to help with that, especially at a walk in clinic.
I know they understand blood work and xrays though. That is why Mom arranged for all of this and she spoke up when the doctor wasn't listening to me.
Long story short now: doctor said that high platelet counts wouldn't cause blood clots or pain, but low B12 levels are not a good thing. (I checked B12 off my requisition myself in 2016 after my doctor wouldn't). I should be having blood work at least once a year, but my most recent blood work was 2 years ago. After asking the doctor multiple times to feel my hips before dismissing my request for an xray (see why she was aggressive?), she agreed and filled out both requisitions.
Instead of being happy with the requisitions and going home, Mom wanted to go to another Walk in Clinic for another opinion. I love her :) I convinced her that one Doctor shooting my self esteem in half for one day is enough for my un-medicated self luckily, but then we went to the hospital to get those requisitions filled. Walk in Clinic, Blood work and x-rays in one day.
The walk in doctor told me that waiting until November 13th to discuss these results with my family doctor is too long. She advises me to get in earlier. Good advice, impossible to accomplish. That's ok
If this is anything like my history with my family doctor, she will advise me that she is not a pain specialist and cannot help determine these things. Wait for another pain specialist and continue trying to work as much as I can. 3 years of this shit almost.
So, I am very hopeful that yesterday was a step in the right direction for me somehow. Maybe there is something wrong with my blood or bones, maybe I could get a hip replacement and the pain in my leg would decrease, even slightly, so I can continue to walk. Something that can be done. There has to be that hope for my Mom. I don't know how she's going to handle the acceptance phase of CRPS, and after yesterday with her, I'm not sure if I am either.
That's as honest as I can be.
CRPS can't take everything away from me. I remain hopeful that there will be answers out there, not just for me, but for everyone else who feels like I do.
I like to mix quotes sometimes and my favorite is:
"CRPS is a life changer" but "life is what you make it and I choose to make mine amazing".
Be kind to your mind and to one another.
Positive thoughts,
-Kristen Sparkle
Day 187/365
Entry 85/183
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