Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘dislocations’

How Many Dislocations Is Too Many?

It has been a little over two weeks since my trip to the hospital where I was subsequently put on a strict liquid-only diet whilst I wait for a referral to see the oral surgeons. The liquid diet has to a degree reduced the overall number of dislocations I’m experiencing on a daily basis which is positive, however, my jaw dislocations are still very frequent. Days such as today I find quite frustrating, I don’t know how best to help myself.

The Dr. I saw who did not believe in Dystonia or have any understanding of EDS was extremely disapproving of the fact that my local hospital had given me a small dose of morphine after the third attempt to relocate my jaw failed. I’d spent over 24 hours dislocated and only had paracetamol throughout, I had not once asked for painkillers until this point. His attitude had left me worried about how to manage my pain at home. I am on my 12th jaw dislocation today. I have broken down in pain multiple times, yet all I have taken to manage it is ibuprofen and paracetamol, alongside applying lavender wheat bags to ease the surrounding muscle spasms that are aggravating it. Normally I would have taken something stronger such as Codeine or Tramadol by now,  which is a treatment plan agreed by both my GP and Neurologist, however I am so aware if on the off chance I have to return to the hospital for help with relocation I will need to inform them of what medications I have taken. I am fed of misinformed and ignorant professionals treating me like a drug seeker. I should not have to deprive myself of the painkillers I need because of one arrogant man.

I feel extremely frustrated. I know that referrals such as these take their time; however, I am concerned that this will just be the start of a very long process. Whatever ‘fix’ they come up with for my jaw, will have to take into account my Dystonia, and that seems like an impossible ask.

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So This Is Happening…

So, this is happening…Due May 2017.

befunky-collage

As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.

I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.

Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).

I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.

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