Mixed Connective Tissue Disease (MCTD)

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Yes ! Yes ! Yes !

So this is the second or third time I have managed doing this sense initially bruising and tearing my rib muscles . Might I add they still haven’t full healed and that initially happened in January 2024 . I swear my left side of my body is shutting down but that’s a different convo . I sneezed and coughed at the same time aka my body violently jerked and guess what strained or ripped it again. Needless to say I wept on my way to work and caught myself silently weeping in my cubical and I said screw it im taking a half day. I have taken the least amount of days out of the office people and constantly cover them . So I text my boss sense he’s being closed doors letting him know what’s going on. Being to the point but vague because I don’t want to disclose every little thing wrong with me I would be stuck there all day. I have a doctors note etc covering me and requesting I be aloud to work from home when having bad flare up days. Which to top it off it was. He waved me to his office and gave me that raised eye brow judging look. “You doing okay ? You a look alright” so I use paid personal time off to excuse myself and still follow along with emails while I’m out trying to recoup and heal the best I can. I hate feeling judged and well you look fine to me comments etc . I’m also 32 and people are like your too young to have problems . That is not a compliment ! Can I just speak my truth on it . It does not make me feel better if anything just triggers annoyance . #MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #MentalHealth #ChronicFatigue #Depression #RaynaudsPhenomenon #RheumatoidArthritis

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I'm new here!

Hi, my name is ReedtamS. I'm here because I want to learn more about my diseases and conditions. Like many people with rare diseases, I accumulated over 30 diagnoses before I was diagnosed with Pulmonary Arterial Hypertension, and a few more since then. Along with all of those diagnoses are the medications to treat them. I take over 35 medications every day. I am trying to live my best life, and educate myself so that I can advocate for myself.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PulmonaryArterialHypertension #MixedConnectiveTissueDiseaseMCTD #IdiopathicPulmonaryFibrosis #Arthritis #AntiphospholipidSyndrome #Hypertension #HypothyroidismUnderactiveThyroidDisease

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Poke Prod Poke

I am so over being constantly monitored and feeling like a mystery science project.

Constant labs and test. Scheduling . Worry. Stress.

No answers no results okay we are just monitoring progression.

I question why I even go. Wishing I never went to the doctor in the first place. Feel like I never get news let alone good news. Always well your just gonna have to monitor it and we will keep guessing to see if anything helps your symptoms but we really don’t know squat about it.

Don’t forget your labs. Got test this week. Make it work with work. Sitting in doctors office freezing making symptoms worse because I was told I have to be here.

What if I just stopped. Stopped labs. Stopped medication. Just enjoy the time I have and live the best I can vs adding all this worry. If it’s meant to be it’s meant to be.
Conflict. Knowing I won’t do it. Knowing I’ll keep going . Just feeling defeated. #MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #Anxiety #ChronicFatigue #Depression

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Black & Blue when I battle you

Constantly at a inner struggle with myself. I always have been the go to person, the one that holds everyone else up, strong independent.

I know asking for help is okay. For me it is easier said than done . It definitely is not on my strong suite let alone add in my patience and it’s a whole mess.

Feel like I come out of a batting ring daily from the time I wake up to the time I go to sleep. Trying to figure out we’re I can make those baby steps on letting people help me. End up just doing it myself. Paying for it later . Don’t want to be a burden.

This especially goes for my significant other he is the hardest one I have issues asking for help from. He has seen me at my “regular” performing state and now I just feel like I’m in the way more than anything.

He never outwardly expresses it or really does anything to make me feel that way. It’s just my brain. The one thing I can appreciate is that he is the one person and even I catch him doing it sometimes. He treats me like me. He doesn’t walk on egg shells he doesn’t coddle me (even though I sometimes wish he did more) but he makes me feel strong even when I feel week. He knows when to push me and when it’s a “hey why don’t you go to your zen garden and relax” type of day.

Just emotionally feeling broken and bruised physically my body is screaming silently yet it’s so loud. I find myself screaming alot in my head. Not sure if that’s a good thing.

I think why me ?! Then again I think why not me?! The universe wouldn’t give me something I couldn’t handle. This is just another mountain to overcome. Yet there is no overcoming it . There is no getting better or a magic pill to cure me.

I just had a birthday over the weekend. By far just made me internally panic more. How will I be in 2 5 10 years from now. Will the people I have in my life still be there or will they have floated down the river of life. Will he still love me . Why if I become to much. I don’t want to take away others peoples way of living . Just alot of “ahhhhhhhhhh”

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

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Scrambled

Mentally and physically feeling scrambled. Can’t seem to settle my mind from running rampet let alone trying to focus on a thought and not feeling completely drained when doing so.

Body has been kicking my behind to say the least. Doing everything in my power to stay up right and semi functioning.

Disconnecting. Spends to much energy. Falling in on myself in the abyss quite safe no chaos.

Struggling to even formulate my thoughts lately.

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

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Little things

Little things that make your life a little bit easier . Weather it’s discovering a new method to do something. I’m a strong fan of work smarter not harder and implementing that on a regular. Physically , work, life the list could go on.

I’m not promoting nor have I been asked to post this. I cropped the best I could . The arthritis cap though , come on pharmaceuticals jump on this trend the majority of your clients are in need of some sort of medication . I know I take 16+ a day and sometime contemplate putting off filling my weekly medication holders. Just because my hands are hurting and not working with me to handle different size pills and or open 16 !!! Caps !!! That are not necessarily arthritis friendly. Just saying this would save so much time and energy .

What are some “the little things” that work for you or discovered read about heard from a friend of a friend expierenced etc

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

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

Needing to give myself a little extra grace today.

Pain day is at a blackout point trying to manage. Holding out on pain medication as long as I can. As the tears roll down my face trying to see if I can make it through a work day in office.

Frustrated. As I feel pain my body tightens trying to hold everything together causing the pain to flare more. Why can’t my body do what it’s supposed to

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Tock Tick Tock

First and for most I had this whole spewl written out then my phone messed up and here we are trying this again. Here goes nothing.

This quote in the image rings the constant nag of the time watching it as it seems to drag by. My body as a pretty good internal clock down to a minute or two from the actual time. I always know the time but still look. The constant cycle spinning through my head as my brain never shuts off. Constantly thinking through a brain fog now, before it was just pure chaos. Not sure either is good. Making list mentally verbally sticking them thinking them when ever it can. Subconsciously consciously writing brain never shutting off. Of course it’s never what I actually need as far as information goes. Squirrel brain to say the least, completely sound though and am greatful for that even with the brain fog. I do wonder though is it worth it with all these side effects. Sitting questioning wondering am I doing it right . Is that what the doctor said . The thing a what ? Is that good or bad? Crud why can’t I remember. Some days are better than others. I’m present and in the moment, most the time.

I just want it to shut off sometimes. Not going to lie because I’m just trying to be raw and let what I’m thinking flow. I don’t like too, nor do I condone it but I have taken a little extra sleepy medicine to turn the switch off. No dreams . No terrors. No real movement. Pretty much zonked. It scares me though that I hit that point.

I question the amount my body goes on autopilot just out of pure routine and functionality . Medicine time. Time to pee. Did you take enough steps. Is that right or is that wrong. Oh wait we are only guessing because no one knows what’s up or down.

Then I stop. I breathe. I remember I am present. I am here. I am doing my best. May not be to the standards of ocd trauma brain of mine . I showed up. I did what I can at that moment. Be present. It is enough. #MentalHealth #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #ChronicFatigue #Depression #MixedConnectiveTissueDiseaseMCTD

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Extra Body to Spare ?! Anyone

Biggest struggle is wanting needing to do something and your trapped. Your supposed biggest asset (your body) is the one that is your biggest kriptonite. Fighting you.

How do you handle fighting yourself ?! Mentally. Physically. Spiritually Even.

People telling you “Google recommendation” just do this. Slow down. Good thing it will be over soon.

It won’t be though. This is something that was dropped out of thin air. No notice. Just one day a switch flipped and body was like “umm nope I’m broken now” .

Not every attempt will be successful to listen to your body needs. Some days will be easier than others. Same as it’s always easier said than done.

Probably a coping reaction. You doing okay ? How you feeling ? Need anything? My response “got any extra body parts lol” but hey I need to add humor and lightheartedness sometimes, even if it’s only for my sake.

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

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Mask Worn

Has anyone ever seen the health commercial. A woman goes throughout her day and she holds up a paper mask with a drawn on smile, while hiding behind the mask on the realness of what was going on with her. Felt like this was such a important commercial because it shows a true reality.

No matter what your diagnosis is I feel like this can be applied.

I know I am for sure pretty much have done it my whole life and almost feel like it’s gotten worse sense being diagnosed with a slew of diagnoses.

Anyone else ?

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

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