So I finally have a Diagnosis! After 9 years of not knowing and riding the roller coaster of doctors, tests, hospitals, sickness just to repeat with not knowing what is going is finally over. Now on to the next even scarier ride.
For the first few years we thought it was going to be Multiple Sclerosis since I was showing so many early signs of the condition. Pins and Needles, Temporary Blindness(Optic Neuritis), fatigue, etc. I was told by so many neurologists that there was nothing they could do as nothing every came up on the MRI's...and other than a large loss of function according to nerve conduction studies there was nothing really wrong. My Neurologist at this time was right that it had to get worse before there was anything they could do.
Thank goodness my dog woke my wife up, saved my life. What a horrible way to start Valentines Day...seeing your husband having a grand maul seizure. It got a lot worse. Really sucks that it took something that severe to get an answer. I came very close to death, glad I was out for the whole thing, but my wife and parents had to see the whole thing. With how Hot I was running and my diagnosis it is amazing I got out of the whole thing with no brain damage.
So after several seizures, blood tests(My arms looked like a Hastings Street Resident), MRI's, and finally a Brain Biopsy the answer came...
I have Central Nervous System Vasculitus. Inflamation of the Blood Vessels of the Central Nervous System, and in my case...just the Brain, no involvement in the spine. Basically my blood vessels in my brain will inflame and restrict or cut off blood flow to my brain. So valentines day the rights parts were restricted, the MRI's show that I've had probably had 17 strokes since 2014(As per my last MRI) as the damage clearly showed up on an MRI scan right after the event.
Can't really blame the doctors for not thinking of CNS Vasculitis...its extremely rare. By an average of statistics I should be 1 of 22 or less people in all of Canada diagnosed for 2018. So on top of being rare when I searched for literature on it most of comes up is all about children, and when I do find information about adults it is usually some ones blog about a loved on going through CNS Vasculitis and those were scary reads.
I start Chemotherapy this Tuesday...just the nasty drugs...no radiation. Thank goodness I am Canadian and have good Short Term and Long Term Disability from my employer. Since from conversations from my doctors it is doubtful I will ever be able to return to work even when the Chemo is long over and done with.
It's hard not to let this get me down. Kind of odd knowing that at anytime there is a chance of the wrong part getting inflamed and my heart just stopping or resulting in damage where I am no longer Me anymore.
Tonight my husband was so angry that he had to make dinner 3 nights in a row because I was sleeping due to being in a bad Sjogrens flare. He said "I feel like your caretaker...do we need to put you in an assisted living community." I am so broken. He is my financial support. To make matters worse I sprained my ankle by falling on it Tuesday and hobbling around is just adding insult to injury. Litetally. I don't know what to do anymore. I started crying and he said "stop stop you are such a child." I've read that 75% of marriages fail when the woman has chronic illness. What am I supposed to do????
Hey y’all, I’m new to the community, and wanted to ask everyone to share their song for fighting through the pain and depression. I’ve been diagnosed with vascular EDS for 7 years, and found out recently that my heart valves are quickly degrading. Music has always been my greatest coping mechanism for depression and I would love to hear what songs you use to keep pushing through.
I didn’t know whether to post this in r/relationships or in this one but ultimately, I felt this subreddit would understand more.
Overall, I feel like the majority of my friends and family understand how I feel and how my illness works. They go out of their way to help me if I really need it and I appreciate it a lot but I have one friend that just doesn’t seem to get it.
Let’s call this friend Emily. So, Emily and I have been friends since before I was diagnosed with my illness. We had a falling out a little before the time I was diagnosed and we became friends again a few months after I was. For this reason, she was not there for the majority of the time that I was in extreme pain and coping with depression due to my condition.
A few days ago, I hung out with Emily and we walked around a lot to the point of where I started having a flare up and got a wheelchair from the service desk at the mall. Everything was okay until we were going home (she was my ride home) and I asked her if she can wheel me to the car and take the wheelchair back to the service desk (she parked too far for me to bring the wheelchair back and walk all the way to the car). She refused saying she understands how I feel with my pain but that we can walk slow so its not too painful. I explained that it doesnt matter how slow we walk, its painful for me either way but she still refused, saying she didn’t want to bring the wheelchair back to the service desk by herself because it would “look weird” (I don’t know what she meant by this). So, in the end because I didn’t want to fight with her, I ended up walking all the way to the other side of the mall/parking lot where she parked and had a really bad flare up for the rest of the night.
When we hang out with our group of friends (the ones who were there for me since I was diagnosed), she insists we walk to places and not take the car because she doesn’t want to drive (she is the only one of us who has their license so far). My other friends and I try to convince her that if we are going to a far place and back, we need to take the car because I have trouble walking and I will be in extreme pain. Emily will then say something like “I’m sorry! We can walk really slow, I don’t mind! I just don’t want to waste gas and take the car” or “I don’t want to take the car because its hard to find parking”. After awhile, I end up just agreeing to walk because she is very insistent and doesn’t seem to understand when I explain to her how my condition works and makes me feel.
Every flare up I have had recently was because of hanging out with her lol. What should I do from now on the next time she acts like this? Am I being unreasonable? Do you guys have any friends or family that don’t seem to understand how you feel?
TL;DR: Friend does not seem to understand my chronic pain condition very well and insists I walk everywhere with her.
Hi, I am a 23 year old who, in the last year, has been diagnosed with chronic urticaria and more specifically delayed pressure urticaria. I started getting rashes carrying heavy shopping bags when I was an undergrad and they have since become progressively worse over the last 2-3 years. I started getting swollen soles of my feet no matter how comfortable my shoes were working as a waitress and even get them now just wearing sandals or new shoes for a short while. I can’t wear a normal bra with underwire and now resort to sports bras because the wire and straps would cause hives and itching and belts cause this too across my waist. I also had a flare up all across my stomach, back and legs when I had an extremely stressful waitressing job last summer where I was working 13hr shifts everyday so the doctor suggested it is anxiety driven which also started when I became a student and runs in my family. Despite this even on days I don’t feel anxious I may get a random spot of hives somewhere but mostly they’re caused by maintained pressure somewhere on my body - I was prescribed fexofenadine which worked amazingly but I have to go back to get a repeat prescription and between these I try to use piriton but a lot of the time that does not work.
I was wondering if many other people suffer from this condition - it seems to have a varied amount of causes and after normal blood tests mine has just been a mystery somewhat related to stress. Does anybody have any tips for reducing swelling and itching beyond medication?
Does anyone else get a little upset with Hollywood and movies like "a walk to remember"?
Now granted I dont know how tough it is or a chronically ill lady, so ladies please dont take me wrong. Being a male I just know theres always a guy ready to scoop one of yall up. Granted that usually turns out for the wrong reasons, but I'd hope not. My generation just isnt good with monogamy I guess. I mean even if we were all not sick, it's pretty much fact women have it easier in the dating arena. Sorry.
Dating as a chronically ill male, is much different than prior to sick. I'd love to see Hollywood do a movie with a Male lead who's the sick one looking for love. I quit dating for a while prior to getting sick because I was maturing, and had to find myself. When I was ready to go back into the dating scene after getting sick, it's just an impossibility.
Just like a work place or anything else, sure I don't have to tell them I have i.t.p. right away, but they'll find out eventually. So I find it better to be honest from the jump. I've had a few women interested in me over the past several years, only to take them out and once they hear anything about "rare blood disorder" its friend zone status instantly.
Does anyone have some advice, for a single 30 yr old sick guy?