Day 3: How did you get a diagnosis?
Well, I have had many "diagnoses," but only very recently was a proper (to my knowledge) diagnosis. As mentioned before, I have had migraines all my life. My doctors chalked it up to: poor diet, dehydration, bad sleeping habits (caused by the migraines), and most often: strain from not having a proper eye prescription (too strong or too low) or the physical glasses giving me a headache. We tried many different methods to stop the "triggers," but none of them worked. Finally, one morning I woke up and it was the worst pain I had ever experienced. I don't remember much of that day, but my friend told me that some staff on campus (this was freshman year of college) found me crying on the ground clutching my head. I went the hospital, got a CT, lumbar puncture, found out I was in the 2% of people who are allergic to a standard IV medication, they couldn't figure anything out - which was actually good news. If they had found something, it would have been a bleed in my brain and I would most likely have died. The emergency room visit turned into a neurologist referral, who has been helping me manage my condition ever since.
Day 3: How I got my diagnosis.
On May 27th 2014, I was on my way home from a long day of work (literally long - 12 hour day this day) I was stopped at a red light about a mile from my house, when a van speeding 55+ mph in a 45 mph zone hit me at full force impact, no brakes until after he hit me. I was taken to the emergency room and treated for whiplash, muscle strains, and a traumatic brain injury. I was released with a soft neck collar I had to wear for three weeks. I went home all light headed from the medication that was given to me at the hospital. Still to this day, I don't remember a thing after leaving from work. I started to experience severe headaches, at times so severe I would literally pass out. Then also my shoulder started popping like crazy, which turned out to be a completely torn rotator cuff. I got referred to an orthopedic surgeon, and we fixed all that, but then the migraines were worse and worse, so I finally went back to my regular doctor, and they referred me to a neurologist. The neurologist still doesn't know what is causing the migraines, we are trying medication, and nerve blocks to manage them right now. After all this today, I am waiting to get back an MRI on my neck, my ortho doc thinks I have two herniated disks. He also told me that could be causing the migraines as well (not 100% sure since it's not in his field). I do have to say though, the medication and nerve block approach to treating my migraines, is a very good one as I don't have as many days where I used to not be able to do anything at all.
@Dillion
Oh my gosh! I'm glad you're able to better manage it now but oh my gosh!
@MonBon Ever since that accident, I have taken every aspect of life serious now, especially since Sep 2015 when I lost someone very close in a car accident. - I think my family is just now the best to deal with cars tbh
Day 3
Many of the diagnoses were pretty simple, see a doctor, sometimes get sent to a specialist - get diagnosed.
I let the psoriasis go way too long, I wish I had sought out a doctor, and pushed for a referral a few times when I do go but didn't get one. When I saw a dermatologist for it they knew immediately.
HAE was really tricky. I didn't get diagnosed until my 30s. I was seeing multiple specialists for my throat issues but nothing was helping. One picked up on something that actually *wasn't* due to my HAE and he ran tests for multiple things. I know what caused that issue, but my c1 inhibitor function test also came back abnormal. It was repeated - abnormal. The specialist who ordered it told me who to see and I had to go back to my GP for a referral. My GP knew nothing about the tests and what else could have possibly caused my result. I was stuck waiting for months with the 2 abnormal blood tests and had to get 2 more before I could see the specialist who would officially diagnose me.
@AffyAvo
HAE sounds like it was a challenge! I'm gla the others went relatively smoothly though so you could initiate treatment and management.
@MonBon
I feel frustrated at times, as years ago before my throat was so bad I had an abnormal result on a test that is used to screen for HAE and nothing was looked into further.
On the other side though, I was actually really lucky to be diagnosed without a doctor seeing extreme swelling or needing to be intubated in order to breathe. Many HAE patients even end up having surgery, often to remove a body part before getting a diagnosis!
The biggest realisation is that I have less energy and can't over-do activities like everyone else and that I can't function right when lacking sleep. I need 8-10 hours sleep a night.
Day 4
Keeping this to the HAE diagnosis
My husband has been great. It's been hard on him, but he has been such an amazing source of practical support. He's also emotionally supportive, but less in a talk-it-through sort of way.
Some of my family was and still is to an extent in denial about the diagnosis. I had some issues growing up without the diagnosis in terms of feeling unwell and how that was dealt with, which is understandable considering there was no medical explanation for what I was going through on and off.
My close friends have been kind and I got some incredibly important messages around the time I was diagnosed, but they aren't nearby or get caught up with major changes in their lives. I do wish I had kept up with some who live further away better, but I too got wrapped up in what I was dealing with and didn't write as much as maybe I should have.
Day 4: How my friends and family have reacted to my chronic illness.
When I first got the diagnosis they thought I would be able to take a medication and like 1-2-3 Magic it's gone, they were sadly mistaken, sometimes it takes different things, and a lot of my friends knew that as some have had migraines in the past, but my family hasn't so it was something really new to them. They have come to terms with the amount of support someone needs from others, and also the amount of medication one may have to take if they are really bad enough. This I am very thankful for!
DAY 8:- In 5 years time I see myself married with kids, working full time hopefully!:)
Day 4: How have your friends and family reacted to it?
⍣My sister actually had chronic migraines from a young age as well. When she was 11 the pain got so bad that she started screaming at my parents and asking them what it was and why she was hurting. She ran into the room with the encyclopedias and flipped around to headaches which led her to migraines. She said "This is it! This is what I have!" As for her, the migraines, they went away in her mid 20s, so maybe there is hope for me? Getting back on track - she has reacted by trying to tell me how to treat my migraines, arguing with my neurologist, and getting upset if I don't want to do her way.
⍣My parents don't really like doctors or hospitals or medication, so uhm, yeah.
⍣One of my friends actually tries to out-do me in terms of pain, which makes it really annoying to talk to her about this, even though she is one of a few individuals who would actually understand the pain I'm talking about.
⍣Other people just kind of assume that it's not that bad and I'm exaggerating. So that's fun.
Day 5
I hate being sick all the time. I can easily deal with chronic illness that is well controlled where some care needs to be taken, like where I have been at times.
The severely limiting of some many activities just to avoid having an attack and often still not feeling good is harder to cope with.
Doing the IVs does not feel normal to me, say the way taking some pills every night does.
I miss being able to have fairly normal activities, even if they have to be tailored slightly. The change also has me feeling sad and frustrated, but it also has gotten easier over time.
Day 5: How does being chronically ill make you feel?
At first, I hated migraines, I still do, but I always was in fear of getting one, I always had it on my mind, how bad it would be, how long it would last, where I would be if I got one, how I would be able to get some rest if I wasn't home. These things constantly ran through my mind. Now that I have lived with them for quite some time now, I am at ease knowing I have to learn to cope with them, I no longer ponder on the never ending or answerless questions that I had before.