HI y'all,
The ups and downs of a marathon girl with a rare muscle disease called Neuralgic Amyotrofy. It struck for a third time. I never thought that it ever would again since having it a second time is not something that happens often let alone a third. Well lucky me....third time's a charm right? No it is not. The acute phase hurts like hell when all your nerves in your plexus brachialis are inflamed and after that? You lose control of your muscles in your shoulder and tadaaaaaa your shoulder hinges on....I don't even know what. It feels like a door out of it's hinges hanging on to some unseeable force. It feels like you're carrying a dead thing around and it's all the things you take for granted that suddenly are things you can't do anymore. Simply because the nerves that need to steer your muscles are DEAD. They can no longer get your brain's message to the intended muscles. Try thinking of it as a closed highway. The neuropathway that is the highway between brain and muscles is gone and therefore you arm and shoulder become paralyzed. In it 's self that is a huge thing to deal with, just take one good look at my shoulders and see what happened. now try thinking of all the little things I am no longer able to do....here let me help you out:
1. Washing my own hair standing up in the shower. I now need to bend over to get my head to where my hands are.
2. Slicing cheese the dutch way with a cheese slicer
3. lifting things like a coffee pot or kettle with my right hand
4. Sleeping on my back or strangely enough left side. Waking up when I try to turn and my arm can't lift the blanket.
5. Tying my own shoe laces. Thank god I love my all of my boots
6. driving my shift gear Ford.
Now you might have picked up on my baseline behaviour over the past few years. It feels like life is trying to kick me down right about each time I'm about to spread my wings and fly. Like I'm not allowed to actually fly and you might have noticed that NO and CAN'T are onacceptable words to me. I will not accept loss of movement in my arm and I know that I will get back up and try to get back as much as I did the first time. Back than in 2006 I lost movement of my right arm and over the years I regained movement back to about 75% when I was told I could never use my arm again. I remember when I was told to just get used to having a paralyzed arm every little fiber in my body shouted THAT IS JUST NOT AN ACCEPTABLE ANSWER and that is how entered revalidation therapy. It took me half a year of therapy to master movement up to about 60% and after that I just started working out gradually regaining movement.
When I went through my second attack it was half as bad as the first one so I got back up way more easier than the first time apart from the GP I had that never heard of N.A. and was hell bent on not believing me. When I finally had my EMG done and the loss of nerves was right in my face I felt such a relieve. I was right he was wrong. Not that he ever apologized for being the dick he was and letting me endure the pain all on my own. That is what made my second attack hard. Not the entire muscle issue but the mere fact that my own GP didn't want to listen to me and made my go through all of it alone and when I was right didn't even wanna budge.
This is my third time around the merry-go-round and because of the first two I am more vigilant, more demanding and more sure of what needs to be done now in order for me to get back up and go through therapy again so I am back on my running shoes within 3 months. My current GP is a good one and this monday I will see another (third) neurologist hoping very much we will get straight to having an EMG done. All I want is to know what nerves are gone so I can figure out which muscles are affected and which are left to maybe take over. With that info I can get a plan worked out with my physical therapist and my personal trainer because....I want to get to the next step. This phase is just plain aweful and I wanna get to the work-yourself-back up part.
The past two weeks have been a roller coaster full of pain, fear and anger. Why me, why now all of that. Just yesterday evening I started having ideas about after this. The word NA in dutch means after so the abbreviation for neuralgic amyotrofy also translates to after. And here's what I want to do as soon as I can:
1. I want to run and if the NYC marathon will happen this year than I want to run that one even if it takes me 8 hours.
2. I want to learn how to shoot a gun
3. I want to swim in open water
4. I want to ride my racing bike
So there it is. After N.A. these are the things I want to check of my to-do. And for now all I can do is wait for the facts. So am I not at all emotional about this? Well yes I am. I am scared that my nerves are so affected that I have no more muscles left to take over and reroute my neuropathways. I am scared that I am not strong enough mentally to go through the proces once again and hit the wall of what I can accomplish over and over again. I am angry that it happened again. I am angry when I look at my body and see the damage, I mean seriously just look at my shoulders....goodbye spaghettiband tops, goodbye nice dresses and oh yeah....try keeping a bra or bikini in place on a shoulder like that. So yes I am emotional but I also know that these emotions are based on fear and anger and though valid as they are they are not based on facts. So all I can do now is wait for the facts and after that I will make room for all that needs to be processed on an emotional level.
For now....I just wanna get through the acute phase, get rid of all the horrible pills I need to take (prednison in a high dose, diclofenac and a stomach protection pill) and I just wanna get out there and get back up. That is all I want. I don't wanna think about all the ifs and whens in a doom scenario. Yes it sucks but if you can run a marathon on blades than I sure as hell can run one with a busted shoulder. So sincerely F you N.A. You do not run my show. I do.
That's it for now, until we read again
As always, Love Marlies
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