It's finally time that I go public with what's been going on for over a year now. Some of you may have heard bits and pieces, or may have seen me first hand, but as much as I've been as private as possible about my medical issues, I'm unfortunately in a position of needing help.
Last year, on August 30th, I was at school sitting in lecture, same as any other day. Then, all of a sudden, my right arm and hand started to ache. (Which, I'm no stranger to working out and being rather active, but this was a different sort of ache.) As lecture was nearing the end, my arm and hand were hurting so severely, I couldn't close my hand to write and I ended up leaving school to go to the ER.
The Dr. walks in to the room, takes one look at me and goes, "What are you doing here? You look great!" HA!! Clearly I wouldn't be in the ER just for giggles. I described what was going on and they said I was suffering from nerve pain and they gave me an rx for steroids, muscle relaxers and pain meds to get me through the following 2 weeks.
Those 2 weeks were brutal and none of the meds they had given me had made any sort of improvement. I landed in the ER a 2nd time for the same issue. Same ER, different Dr., they were like "why are you here again, there's nothing we can do for you" and all they did was send me on my way with more meds (which wasn't what I was looking for at all - if any of you know me, I hate having to take any sort of meds, I'd rather deal with things naturally, if possible, or just tough it out until things get better on their own).
I suffered through another week then changed hospital systems and couldn't be any happier with that decision!
**I now have a wonderfully expansive, thoughtful, and compassionate care team that has continued to grow to include more and more specialists the longer we've been trying to figure out how I can get better.**
After a thorough and extensive examination and working with a physical therapy team, last October (a month and a half after I landed in the ER the first time), my care team figured out what's wrong with me.
I was diagnosed with Parsonage Turner Syndrome.
This is a rare nerve disorder that comes on suddenly, with no sort of pre-cursor, so there was nothing that I could have done that would have prevented this from happening to me.
Parsonage Turner Syndrome affects the brachial plexus, which is the bundle of nerves that comes out of your cervical spine, intertwines and runs underneath your collerbone out into your shoulder and branches off into all of the nerves in your arm and hand.
Because of this, I'm now suffering from a number of issues:
Primaraily, the first issue is nerve damage/nerve pain.
It messes up the right side of my neck (sometimes up into my face), all around my shoulder and shoulder blade, (the front part and all over my back) my ribs, my upper arm, elbow, forearm, wrist, hand and fingers.
The whole shebang.
I am in pain every single day of my life now; I never knew that a 1-10 scale and I would ever be so familiar.
Anyhow, Secondarily, muscular issues.
The nerve neuropathy has caused:
- muscle atrophy (muscle wasting),
- reduced strength in my arm and in my hand,
- reduced range of motion (I can no longer raise my arm up out to the side or to the front - best I can manage is maybe 40%),
- reduced rotation of my neck
- extension issues (which means I have difficulty reaching my arm out/away from my body: straight out (think of the motion you make when going to shake someones hand) or lifting to rest on a table or desk, or somedays even trying to just lay my arm down at my side when I'm resting in bed or on the couch - I need to keep it bent in front of my body to try and minimize pain)
- reduced grip strength and inability to close my hand (grasping, turning - like, trying to remove a lid or a cap from something, picking things up, holding things - like a coffee cup or my cell phone, writing or holding utensils, trying to use a knife and cut things, holding a kitty litter scoop...those sorts of every day things people do)
Because of all of the muscular issues that are directly caused by my nerves that no longer function properly, the non-damaged muscles are forced to overcompensate to try and overcome the defecits caused by the nerve damage. This has caused trigger points to develop all over the darn place, both on my right and left side, so on top of the nerve pain I experience everyday, I'm also trying to deal with muscular pain that's an entirely different chronic pain than the nerve pain thats most characteristic to Parsonage Turner Syndrome.
The third issue is severe sleep and fatigue problems.
The problem with this issue is that the Drs. aren't sure if the Parsonage Turner Syndrome has exacerbated the Chronic Fatigue that I've already been living with OR if being in such constant pain is in itself causing me to sleep excessively and need an excessive amount of time to recover from doing "things" that unaffected people don't need any sort of recovery time from.
(Example: I took the train from Chicago to Milwaukee to visit my family for Easter - up on Friday, back on Sunday - then the following day I ended up sleeping for 21 hours just to try and recover from making that otherwise easy trip)
Most likely, it's both - being in constant, chronic pain (both nervous and muscular) is in itself causal of excessive fatigue, dealing with a major injury requires substantially more rest than what one is typically used to, Parsonage Turner Syndrome causes severe muscle fatigue, and suffering from Chronic Fatigue prior to this whole ordeal doesn't help the situation any.
Fourth, my rheumatologist has also diagnosed me with Fibromyalgia. Who are we kidding, this is just adding insult to injury at this point, lol.
Anyhow, it's been a brutal year of working with a lot of different specialists and therapists to rule out any other potential possibility of what could be wrong with me (has anyone ever had an EMG? Sheesh, for me, it was 2.5 hours of electrocuting every nerve and muscle on my right side from my neck down to my finger tips. I sobbed through at least half of the procedure - brutal - I wouldn't wish going through that on anyone) and for at least half a year, probably longer, my entire care team is all on board that there couldn't possibly be anything else contributing to the mess I'm living through right now, Parsonage Turner Syndrome is kicking my butt and there's no for sure cure or time frame for when or if I might get better.
I'm incredibly hopeful and optimistic that with my continuing to work with my care team at the hospital, by keeping up with my meds (purely a bandaid to try and make my surviving through the day easier), by allowing myself time to rest, by treating myself well nutritionally and with complimentary accupuncture and therapy sessions, that some magical day, I will start to get better.
In the mean time, I've collected a rather large sum of medical bills and have had to discontinue accupuncture and therapy services because I can no longer afford to continue seeing my doctors that have been with me throughout all of this for months. I'm also continuing to struggle to figure out normal living expenses as the short term diability that I receive through my job is tiny due to my being in school and my disability lawyers say this could take years to even get my case in front of a judge to try and get any kind of assistance.
All of this, this entire predicament that I'm in is incredibly disheartening. It's hard to wake up every day knowing that it's going to be another day of fighting just for the basics that people take for granted of getting through their day. And as much as I'm hopeful and optimistic about someday being able to recover from this horrible phase of my life, there is a chance that this is going to be it, that I'll never get any better than I am today. (I try not to think about that being a possibility, but I do need to at least be somewhat realistic about my situation and what could happen to me in the long term.)
And so, in being between a rock and a hard place, I'm creating this campaign so that I can hopefully have some sort of repreive in at least one area of my life that has been causing me undue stress.
Typing all of this has been difficult enough (to give you folks an idea of what it's like to try and "do work" these days, it's taken me somewhere between 5-6 hours just to type this short description of what's been going on with me as I couldn't keep my right arm lifted to type for long and had to keep taking breaks for my hand/wrist/arm/neck before I could get back to it) and I can imagine this is too long for anyone to want to read in its entirety anyways (sorry, was just trying to do my best to let you folks know what's going on!) that I'm going to wrap up for the night!
Please feel free to reach out, to ask questions, to offer support or words of kindness as I appreciate any and all assistance that people are able to provide for me as I continue to try and get better!
Thank you, everyone, for reading this, for your time, for your thoughtfulness and generosity. It really means a lot to me that when things really came down to it, I was comfortable enough to finally tell everyone what's been going on and to ask you all for the help that I desperately need.
Here's to hoping you're all doing well!!
All my love and best wishes,
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