Who am I?

So, who am I?

1. I am 38 years old
2. I am a registered nurse
3. I LOVE my cats, they are like my children, and they know it!
4. I was a figure skater and used to compete
5. I did ballet for all my teenage years, and some in my early adulthood
6. I have a number of chronic illnesses/disorders/disabilities
7. I don't let any of it stop me from doing what I want to do!

You may be wondering what medical problems I have, well here is the list. I will do my best to explain each of them.
1) To start with, I was born at 27 &1/2 weeks, breech (bum first) and not breathing.
Also b/c of such a traumatic birth I got 2) LOBPI: Left Obstetric Brachial Plexus Injury. The nerves in my cervical spine  (neck) were damaged, to the extent that I cannot use my arm normally. I am missing many movements, external rotation, flexion past 45 degrees, extension, supination...
3)Transverse Myelitis
4) Dysautonomia
5) Gastroparesis
6) GERD
7) Chronic migraines
8) Nausea
9) Sleep Apnea
10) HMS/EDS (hyper-mobility syndrome/Ahlers Danlos syndrome)
11) Hydronephrosis of left kidney

I have also had many treatments, surgeries, and a few scary problems that involved life-saving interventions!


So, what is TM you ask?


It stands for Transverse Myelitis. Ok, you ask, what is that? It is a neuroimmunological disorder that attacks the spinal cord once, unless you have the relapsing type that 3% of people with TM get. Luckily (I guess?) I have the one type that strikes once.

So, what does TM do exactly?
Normal, healthy cells in the spine get destroyed by the types of cells that go "eat" cells that have a virus (for example). For some unknown reason these cells (macrophage) can't tell the difference between viral cells vs healthy cells and attacks both. This is what all autoimmune diseases deal with; MS, diabetes, rheumatoid arthritis... For TM, the myelin sheath that covers the cells gets destroyed, and while it does grow back (very, very, slowly. 1mm a day) the exposed underlying nerve gets injured, destroyed to varying degrees. It makes a mess of both motor function (movement) and sensory function (the ability to feel heat, pain, touch)

In my case, I was attacked at T1,  (1st thoracic level of the spine, way up the back)
Both sensory and motor function were affected, some places more, others less. I was initially paralyzed from the chest down; I could not move my toes, feet, legs. Could not sit up, roll over/turn over. I was in severe pain, nerve pain to be exact. My body felt like it was on fire, felt like I was being poked my pins, had pain that felt like my foot was in a vice, or being twisted when it was perfectly straight. I could not get comfortable no matter what I did. I was given medication but it's a game of trial and error to get to the right dose  of pain meds, which pain meds, and when is the best times to take them.
I was given a high dose of IV Solu-Medrol, a steroid used to decrease swelling in my spine. I was then on oral prednisone. But I still wasn't gaining back any movement. So it was decided to do a 5 day course of IVIG. In my opinion that is what finally allowed my body to start healing itself.
I very slowly started to regain movement.

You might be wondering what winning the lottery has to do with getting TM. Well, when I came into the ER and tests were being done, my GP happened to be working the ER that day and he told me that I had a better chance of winning the lottery, than I did of getting TM. Yes, it's a rare disorder as I mentioned above. Figures vary a bit but it's about 1-5 people per million per year in North America who will get TM.