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I'm new here!
Hi, my name is PinkPachederm. I'm here because I have several autoimmune issues: Reynards, Sjogrens, Fibromyalgia, CAD, Arthritis, Migraines, Chronic Fatigue - as we know is a symptom of all the aforementioned diseases. Then for some extra fun I have Neuropathy in my hands & feet, carpal tunnel in both hands, something else in my thumbs - can't remember the name, and Glaucoma. High blood pressure, though not too bad, is kept under control, as is cholesterol. I am in constant pain somewhere in my body every day if not all over. I can tell when the weather will change by my barometric migraines which are as bad as regular migraines. The regimen of daily pills & healthy diet can sometimes get frustrating when a flare up occurs & the meds for it just put me to sleep. I detest having to cancel plans due to a flare up or migraine so severe I can not function.
So, I am here to see if there really are like pained people. Sometimes I think I am going crazy with all this pain & all these issues. Is there anyone else experiencing all of this???
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New (to me) twist migraine #Migraine
Two things: From about 1999-2015, I experienced 2-4 debilitating migraines a week. Stress was rampant in my life then: a hateful ex, money issues, workplace animosity, kids, and, and..and... You get the picture. Life did settle down, stressor went away and so did migraines.
Fast forward to present day and the stressors have gone back up: more money issues, caregiver stress, house projects, PTSD triggers, and more. Since fall,I've been having what I call regular headaches--tylenol would keep them at bay. Well, this week, I developed intense eye pressure, visual disturbances, nausea, and headache that woke me up. So the optometrist tells me that it's not glaucoma or anything 'major'. It's dry eye, and it was feeding the headache, which made the dry eye worse, which fed the headache. Interesting part is that the form of my migraine changed, which is why I didn't recognize it as such.
Questions:
1. Has anyone ever had a break from migraine and then had them resume?
2. Has the form/type of your migraine ever changed?
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Dating is hard, dating with chronic illnesses is even harder
I was told I suck, I’m lazy, and oh yea the gluten free food I can eat is terrible. You might be asking, “Why would someone say this?”. Because I had to cancel dinner plans due to a flareup. I guess I need to date a few frogs before I meet Prince Charming but man, can the next frog be a little nicer?
I tend to open up about my health early because I’m always nervous I will have a flareup, I’ll need to cancel, and they won’t understand. Welp even if you tell someone, they still might not listen/understand and resort to calling you names.
Anyone have similar experiences? I feel like I need to write a book at this point, “Dating stories: Chronic Illness Edition”.
#Arthritis #ChronicPain #Uveitis #Glaucoma #HypothyroidismUnderactiveThyroidDisease
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I'm new here!
Hi, my name is wanderingdeer. I'm here because
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How Has Your Health Changed Your Perspective In A Way Others May Not Understand
If 1000 people with your same condition where in the same room as you , I bet you would be the only one with your perspective on life “
The man at our churches end of summer party responded to me in what felt like a half disgusted , and in another way half impressed form of bewilderment .
He is the type you can tell life had not handed a kind hand to .. and in process he has hardened with the pains he has had to endure
( kind of how the same water that softens a potatoe hardens an egg )
I smiled and said to him
“ Not exactly, I’ve had the opportunity to work along side and get to know many with conditions like mine ,
Or worse .. and the perspective on life with severe illness .. it’s kind of a mixed bag “
And he could just not wrap around his head around how im so happy .. but a 28 year old , with failing health .
I tried to explain how even though im lacking in the physical health department .. I I feel like I can have joy because God has blessed in so many ways .
With a chuckle and a smile he told me he was Jewish 😂❤️.
He could not wrap his head around how I see the world .
And I could not wrap my head around how he sees the world .
Maybe God knew I needed this conversation when it seemed like all I was doing today was marinating in the frustrations of my current situation .
I even came out to our Church cook out knowing I didn’t physically feel good enough to be there , and cursing out the constant drizzle of rain .
But as it rained , 2 rainbows formed
And through my conversation with this man . The rainbows just seemed to get brighter .
As I left the party , feeling a new perspective on how to face my current dilemmas .
I couldn’t help but say a silent prayer to God thanking him for the rain in my life .
So I know just how important rainbows are . 🌈
How has your health changed your perspective in a way others may not understand? #RareDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #Epilepsy #LungDisease #MentalHealth #MixedConnectiveTissueDiseaseMCTD #Glaucoma #Gastroparesis #chronicmigraine
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I gotta order new glasses
But my glaucoma specialist wants me to wait until after I see the neuro opthalmologist. I got my prescription written down and I've been checking out frames online. My insurance doesn't cover the frames at my opthalmologist office so I gotta look elsewhere. I was gonna order a pair online but my mom said if I can get my insurance to cover a pair I should do that instead. I'll see about what I do next month.
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Today has been a shit show
The company that was scheduled to pick me up for my appointment cancelled my ride so I had to call the main hub for my transportation to order a Lyft. That was annoying but manageable. What wasn't manageable was my doctor not doing his job. He decided to tell me to see a different doctor that I have seen in the past. He was concerned about my eye pressure being just a little high. So I have to go see the glaucoma specialist in January. I don't have glaucoma. I might have astigmatism and I have atrophy in both of my optic nerves.
I was supposed to call my insurance for a ride home so I did. And I couldn't reach a human being. I was on hold for over 15 minutes. I ended up just ordering my own Lyft out of my own pocket. I was so angry and frustrated with the transportation company. I still am but I had therapy today at 3pm.
I had a panic attack when I got home. It was the same as the last few times. I took a shower and I felt a little bit better. I'm trying to figure out what is triggering my panic attacks but so far I don't know.
We talked about my feelings about my experience. We also talked about the panic attack. He made a suggestion for eating at the kitchen table from now on. I've been eating and smoking on my couch and bed. I'm gonna try to be more mindful of what I do. I gotta get the panic attacks under control.
He asked me why I haven't been using the table and I said I haven't had a table for over 8 years and I don't know how to start using it now. We talked about how to do it and it seems like it would be easier to do than I thought. But time will tell.
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Possible MS patient?
Hi, my name is Mandy I am 34, and a kindergarten teacher. I have been having crazy random symptoms or things happening to me for the last few years and nobody seems to be able to explain it. I've been overlooked based on my age many times. I got a pacemaker at 30 for SSS, hypothyroidism, alpha-gal syndrome, lyme disease, flushing (that derm determined is rosacea), blepharospams where my eyes won't open in the morning and as of yesterday I have been diagnosed with glaucoma and thinning of my RNFL. My optometrist wants me to have a doctor screen for MS as a possible cause for my varying symptoms. My last dr... wouldn't take me seriously and when some lab was 1 point in the green, would call it normal and dismiss me without helping me continue to find out what was going on. It has been very stressful and caused a lot of anxiety and doubt in myself. I just wondered what other peoples journeys have been and what kinds of symptoms you have. I wrote out two pages of random symptoms I've been having and feel kind of crazy. Any support, or insight is so appreciated.
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