Mixed Connective Tissue Disease (MCTD)

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Faking it, until I make it

I awoke this morning after yet another night on the sofa with Binks, my wee dog. I have chronic insomnia and so much pain I can’t climb the stairs. I was in luck last night, the start of a meteor shower, so many shooting stars, who needs fireworks? A brief glimpse the Northern Lights and a cup of tea at 3 o clock.
I’ve just kissed my husband, Paul before he goes to work. Every morning I make his sandwich, yes he could do it himself and happily would, but, it’s my little way of paying all his kindness back.
Ever since I had my Covid vaccine 3 years ago I have a shingles type rash in my genital area. It’s so, so painful, it’s like having pants full of fire ants.

It’s been a very, very rough 4 month’s, I’ve fallen down the stairs 4 times, bruised myself very badly, I’ve had Covid, 2 very dear, very fit friends died, far too soon. One a super fit, marathon running woman, days from her pension, had a back ache, went to the doctor and was told she had stage 4 pancreatic cancer, she lived just 11 days after diagnosis. The other a lovely, gentle bear of a man died from heart failure. One 65, the other just 60. It made me reflect that despite this godawful disease of mixed connective tissue disease, fibro, Behçet’s and rheumatoid arthritis, I’m still here. I’m so in tune with my body and its numerous creaks and groans I’d notice change. I miss them and will plant them roses in my rose garden. I’ve planted too many over 3 years.
Today I’m taking Binks my puppy out to the forest, it’s literally just our my door. I use my wheelchair, she runs ahead. I hope to sew butterfly wings for my granddaughter Emma and make a unicorn hobby horse.
I’m grateful for every moment of every day, could it be better? Of course, but, it’s still pretty wonderful.

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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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Ketamine Infusions for MS? Does any one get ketamine infusions? Frequency?

Does any one get ketamine infusions? Frequency? Dosage? Protocol? Who prescribed & oversees? Cost? Are you able to get insurance coverage, reimbursement, or any thing to help w expense? Has anyone head about the clinical trials of ketamine to improve fatigue for MS? I have a demyelinating syndrome & connective tissue dx (both have no name), degenerative spine disease, and I recently got diagnosed w DISH (diffuse idiopathic skeletal hyperostosis). I’ve had 8 spinal fusion surgeries w plates screws and rods. DISH causes extra bone growth, specifically bone spurs on my spine. These bone spurs connected to form a bridge, a bridged osteophyte complex T5-T11 #MultipleSclerosis #Scoliosis #SpinalFusion #SpinalStenosis #ComplexRegionalPainSyndrome #AnkylosingSpondylitis #MixedConnectiveTissueDiseaseMCTD #spinal

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Never saw that coming

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

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Little 🐥

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

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Glue Trap

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

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Lost

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

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Bitter Sweet

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

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