Raynauds Phenomenon

Holà, I'm Sara, 26 years old, living in Paris with quite a well-stocked medical résumé. Between Ehlers-Danlos syndrome, a pseudo Raynaud's syndrome, Arnold's neuralgia, and maybe a bit of arthritis thrown in for good measure, let's just say my body loves complexity. Oh, and I'm still waiting on a diagnosis for a nerve demyelinating disease—if I ever manage to get a full diagnosis, I might as well write a medical textbook!
#MightyTogether #EhlersDanlosSyndrome #DemyelinatingNeuropathies #RaynaudsPhenomenon #Arthritis

Hi - I lost my thyroid functionality due to toxic chemical exposure while serving in the Army. I don't regret my time in the military at all, but it is what it is.

It seems the thyroid was a doorway, and without it being shut anymore, many unwelcome visitors came in and set up their new home. Besides the thyroiditis, I now have pernicious anemia, Raynaud's syndrome, scleroderma, and the newest and most nefarious invader, Stiffperson Syndrome. I never would have tested for it without Céline Dion's announcement, and I am grateful for her courage every day.

Stiffperson, however, has made it very difficult to hold down a steady job. It has made the cold winters here painful to my muscles. It has changed my idea of my future and my plans. I took my health seriously and used to feel I could do anything. Now I feel limited and that has taken a difficult mental toll on me.

I live in the northern part of the state of Utah, in the US. I appreciate the advice here and am looking forward to learning from the experience from people here. I want to thank you in advance for your help and your insights.#StiffPersonSyndrome #PerniciousAnemia #Scleroderma #RaynaudsPhenomenon #thyroiditis

I did a thing. I did some research over the last couple weeks on psychologist in my local area.

As you can tell I have been struggling mentally and am a bubble of coffee about to over flow my mug. Yes I said coffee because that is about the only thing that is keeping me up right at the moment .

20 -30 minutes of deep sleep a night and little rem is not doing me any favors.

I found one I almost cancelled at the last second but took a gamble and called her up she reminded me so much of my step mama and took me back to days or nights sitting on the kitchen floor as I talked to her while she did her hair or what not. She got me in the next day.

I advocate for mental health and getting the correct treatment weather medication or talking to someone. Or both. I am not so great and following my own words when it comes to self help.

I’m better at taking care of others than I am at taking care of myself .

My middle school counselor was someone I truly opened up too. Saw him for a couple years and then he passed from cancel. Sense then I have not been able to get over the hurdle of seeing someone new.

Well I took the first step and I think I’m going go take another. Next appointment in two weeks and giving EMDR a try. This should be interesting. I came out of the womb stressed

#MixedConnectiveTissueDiseaseMCTD #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction #Anxiety #ChronicFatigue #Depression

Hi, my name is Ms_Lee. I'm here because I have multiple life changes occurring (moving to a Berkeley at age 65, coming out of the closet, entire family died)only to havemy body collapse with multiple diseases and injuries. This year's line up is 2 total hip replacements and maybe one arm cubital & carpal surgery re-surgery. I never would have moved into a 'home' if I knew I was going to be incapable of maintaining it and myself. Makes it incredibly difficult to find energy to make new friends in this community. I feel overwhelmed. #Arthritis #longcovid #MightyTogether #Anxiety #Depression #Migraine
#longcovid #OCD #Grief #RaynaudsPhenomenon #Scoliosis #Osteoporosis

I just told my daughter L. that I would prefer to do it tomorrow or Wednesday. So that I can make sure I have the energy to enjoy the time together vs how I feel exhausted today after a long day.

It really wasn’t bad or anything just one of those Mondays at work nothing really great and nothing really bad. Just was.

Back to L. It was so odd for me to say that. I normally am not good at that bouncy especially when it comes to kids or elderly. I think it’s just how I was raised . I was always the care giver. It felt empowering though. She wasn’t thrilled of course what 16 year old would be for saying no to going to a “junk store” to “look”. Aka me driving all over the place spending energy money and time. I enjoy the moments and I know they won’t always be there . Just interesting how when they get older boundaries can change and adapt. Also is weird to me because how I am with L. Is so different than I am with B. (Oldest daughter) . Such different personalities and to the extreme opposite but not .

All in all weird but good feeling for holding a boundary . Even if it was with family .

#MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #AutonomicDysfunction #RheumatoidArthritis #MentalHealth #Anxiety

Feeling sticky and stuck.
Seeing the same things all the regular ins and outs of my days.
Hearing the constant negativity around work.
Home is not much better. Not really anyone’s fault there because it’s constant bombarding from outside source. Mainly one in particular. Besides my point.

Normally I can handle the madness that is presented to me and I might add pretty calmly too.
Medication changes, dosages up and down. Emotional. Head doesn’t feel right. Feeling like I am stuck were I am. I take a step forward and then snap right back to we’re I was mentally. Constant tug a war.

Not a lot actually makes my soul happy anymore . More of auto pilot and going through the emotions. Existing surviving . Not living.

I know no one really imagines the negative or bad stuff happening nor do we want it to happen. That’s life. Ohhh is the universe really testing me.

Breathe in . Breathe out. Breathe in. Let all the BS out.

Stop absorbing . No more room. You don’t have to fix everything.

Don’t even feel like I am in my own body or skin. Just the remaining essence in me that still exists.

#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #ChronicFatigue #Depression #Anxiety

I honestly have no idea anymore. I don’t know how I actually feel and think. Tornado of thoughts overwhelming .

Part of me wants to jump off the cliff head first (figuritvly speaking) start a new and see we’re life takes me . Maybe move . New beginning or end . Where no one knows me . I’m just me and how I am when I showed up to the town. Maybe that’s some of my wishful thinking and to many hallmark movies.

Part of me wants to keep fighting holding on to what I’ve built. Stepping back and admiring my wanky life I currently have.

My white blood count dropped into the danger zone. Doctor had to re issue me Prednisone and take me off another while mixing up my doses. Feeling unbalanced and not myself. One second i am all emotion and over the top the next second I’m calm as a cucumber. I don’t get it.

I’m tired. So so tired. Feeling lost and forgotten.

#MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RheumatoidArthritis #Depression #MentalHealth #ChronicFatigue #AutonomicDysfunction #Anxiety

Hi, my name is Sentence_4_life.

I'm worried about where to go from here. I have been dealing with these issues for a very long time. I feel like the doctors are tired of finding more and more autoimmune issues. I am tired of hearing it and having to deal with the effects. The medical issues I have, hold me back. But the medications are worse. I want to move and live my remainder of my life somewhere I would like to be. Because the regulations of the medications, it is the real issue of me not being able to move somewhere more affordable. The government has stepped in, and the doctors are no longer taking the proper care for you and your stuck if you are put on opioids early on and moving to another state isn't as easy as it sounds. Finding another set of doctors like I have now. Is extremely difficult, regardless of all your images, records, reports, medical documentation. They want you to start all over again and not prescribe the same meds. I am 62 years old. I just want to move where I wish to. Go to a doctor's office get to know the doctor like the old days. Get my medication filled and go back to my life. I have been attempting it for 3 years. I hit brick walls of what another doctor wants and etc. I'm old, tired, and want to relax for my remainder here.

#MightyTogether #Anxiety #Depression #Migraine #ADHD #RheumatoidArthritis #OCD #Fibromyalgia #MultipleSclerosis #Endometriosis #LupusNephritis #Lupus #RaynaudsPhenomenon #CeliacDisease #SjogrensSyndrome #Arthritis #PeripheralNeuropathy

I went to a family reunion over the weekend and then spent the next 4 days balling my eyes out.

I feel like I have lost that side of the family. For the sake of this post we will call it family M.

I feel like I have no family. I have a significant other that hasn’t committed past significant other and honestly I am not okay with it, almost 7 years… family M is the one that I always idolized and believed whole heartedly that’s what a family looked like. Close knit, weekends together your family was your best friends. Then family W who tries but the only ones that I have any real relationship with is Grandma and Grandpa and my sister .

I just see so utterly alone. What happened it’s nothing but a wrecking ball of disaster. I feel like pretty much sense adult hood … not even gonna dive into that one . The feeling I am feeling now stems from my Opa passing 3 years ago he was the brick and mortar to the M family he got sick suddenly, cancer from working at the plant (automotive) everything changed. He made the decision one night to pull the tube out and said if I can’t breathe on my own then I don’t want to breathe at all. I don’t want to be remembered this way . Sometimes that makes me so mad, now that I am sitting here diagnosed with a slew of things that can’t be fixed . Maybe he saw something i didn’t and don’t yet. Everyone is gone . The brick has crumbled . On the positive the brothers as I call all my uncles are still staying true to there promise about my Oma . Loving and spending time with her.

Not sure my point here besides treasure the moments and memories you have . You never know when they will be gone. Even if all parties are alive they can become nothing more than a sweet sad memory.

#MentalHealth #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #AutonomicDysfunction #Anxiety #ChronicFatigue

Internally bottling
Anger
Sadness
Lonely
Bitter
Back Burnered
Pain

#MixedConnectiveTissueDiseaseMCTD #MentalHealth #ChronicFatigue #Depression #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction