Mixed Connective Tissue Disease (MCTD)

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

Hi, my name is Reliantharp5042. I'm here because I have Mixed Connective Tissue Disease and Lupus.

#MightyTogether #Anxiety

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

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

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

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