Scleroderma

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Scleroderma
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    I'm new here!

    I'm here because I have a few rare diseases 1st was a congenital heart defect #ScimitarSyndrome which lead to 3 #OpenHeartSurgery and 1 #stent after I was diagnosed with #PulmonaryHypertension and now testing is in the works for #Scleroderma non skin so here I am figuring it all out !!! Hello 👋🏾

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    I'm new here!

    Hi, my name is Michelle79. I'm a divorced mom of 2 teens without a support system. I feel like I'm scrambling just to survive. I'm lost - I know that help is available but need help finding it. I'm dealing with all this while still trying to be the mom my kids deserve. My hope is I can gain knowledge, resources and validation that I'm not alone.

    #MightyTogether #MultipleSclerosis #Scleroderma #Hypersomnia #PTSD #OCD #Anxiety #Narcolepsy

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    What has been the most difficult part of your journey with gastroparesis?

    Gastroparesis brings with it a whole host of challenges, both physical and mental. It’s an exhausting condition in more ways than one. While I have yet to find a part of living with gastroparesis that isn’t difficult, there have definitely been moments that have been more difficult than others.

    Finding a provider familiar with gastroparesis and my other chronic conditions has proven to be quite challenging and I always feel like I’m on the lookout for better doctors. While the diagnostic journey was rather arduous, I think the aftermath of carrying this label might be more taxing for me, at least emotionally. Before being dumped last winter, my now ex-partner would comment on how complicated and stressful dealing with my health was. The gastroparesis diagnosis seemed to be the final straw and was what officially made the situation too “complicated” for him. Gastroparesis can be difficult to manage, but his words sure made everything worse.

    That’s been the most difficult part of my journey with gastroparesis — the lack of acceptance and patience from others.

    So, Mighty family, let’s get real. What has been or continues to be the most difficult part of your journey with gastroparesis?

    #Gastroparesis #EhlersDanlosSyndrome #Diabetes #GERD #Neuropathy #ParkinsonsDisease #MultipleSclerosis #Scleroderma #CheckInWithMe #MyCondition #Hypothyroidism #UnderactiveThyroidDisease

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    What are your favorite gastroparesis-friendly snacks, meals, and drinks?

    Finding safe foods and drinks is a difficult and exhausting process, especially when dealing with everything else gastroparesis entails.

    After I was diagnosed (which was a whole process in and of itself, as I’m sure we all know too well), my gastroenterologist’s office just told me to “look up the gastroparesis diet online.” Yeah, not helpful. While there is some information online about the diet, it’s hard to follow, physically and mentally, and requires a lot of patience as you test your limits.

    While I’m still searching for the ideal plan for my gastroparesis journey (I will admit that I do love taste-testing different flavors of Ensure), I want to hear from you, my fellow Mighties living with gastroparesis! Friends, what are your favorite or go-to gastroparesis-friendly snacks, meals, and drinks?

    #Gastroparesis #Diabetes #EhlersDanlosSyndrome #EDS #CheckInWithMe #Neuropathy #Nervedamage #underactivethyroid #Hypothyroidism #Scleroderma #Lupus #Parkinsons #MultipleSclerosis #MS

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    Lost in so much emotional pain. #Depression #Anxiety #CPTSD #HSP

    Today I’m back to being completely confused to what is so wrong with me that my family of origin refuses to even try to accept, understand me and hurt me so much in how they communicate and relate to my perspective and experience.

    Yesterday my sister was sharing with my and our mother about a friend of hers who’s mother passed away and there was some issues that her friend was having with his siblings. Issues revolve around family their home and how will they figure out what to do with it.

    To this I made a comment that it would be really important to have some very clear and open discussions to get each other’s imput. Then I added that this kind of conversations would be best to have way before things are critical and in this case before the mother passed had away.

    My sister had also kept emphasized how much responsibility her friend had taken on in taking care of his mother over the 20 year especially as her health had kept declining with various medical conditions.

    This is the frustrating part. As long as we were talking about someone else and his family dynamic and what they need to do was fine. It confuses me when I made the huge mistake by commenting that it’s really unfortunate to have unnecessary discention within a family. If there was more open, clear and honest one on one and group communication about what is important to each of them would have helped avoid much of the conflict. So the second huge mistake I made was mentioning it’s not good to communicate with only one family member about certain things and the rest of the family members are in the dark and clueless of what is wanted and needed to be done to be of any help.

    So I should have known with me shifting the conversation from the ‘safe’ topic of gossiping about another family’s drama to making it more personal about our family. Because my mother got extremely upset with me that I somehow completely changed the subject by shifting the conversation to a personal one instead of continuing to gossip about people I don’t even know.

    You see I know my mother does say certain things to my sister that she doesn’t want others to know. I know this because for example just over 10 years ago she told me she had just been told by her doctor that she was possibly dying when she had gotten her diagnosis of Schlerderma. She then made me promise not to tell my 3 siblings or my father about her diagnosis and the possibility of only having 5 years to live.

    My new awareness that I’m an HSP and highly empathic at least explains now why I really hated being put in that kind of position. I tried to stay silent. Even went to a research library to learn about Scleroderma and even found a specialist that my mother is still going to till this day. I’m capable of doing my part but somehow in recent years I’m made to feel like I’m not doing enough. But you see I not my mother’s confident for a lot of things obviously. Probably because I did break my mother’s confidence by telling my siblings about her condition about 2 weeks after she told me.

    This is only one example and who knows what each of my brothers and my sister may know that is being kept from each of the rest of us. The issue for me now is somehow I’m the ‘lucky’ one to be made everyone’s scapegoat which all my family members chose to deflect and dump all their unwanted emotions on, especially guilt and shame. This is where it’s gets really ambiguous and too intangible for me to completely untangle how this affects me. It definitely makes me batty and think there’s so much wrong with me. It’s now also so glaringly obvious that I don’t dare try to take any conversation to a personal ‘I’ perspective without immediately being shamed that I’m either making it about me or blowing a conversation or situation completely out of proportion.

    This is gaslighting in its truest form and it does directly impact my mental state. It’s impossible for me to explain why and how all the family’s dysfunctional dynamic has made my life hell. How decades of depression, anxiety has impacted my senses of self and all areas of my life. There is just so much overwhelming emotional pain that becomes really unbearable for me. My heart and soul is just crushed that I’m being made to feel this way by the people who supposedly love me.

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    No pain today #Scleroderma

    Today I woke up to very little pain. Scleroderma does that. You wake up and ask sclero “what are you up to today?” So today I’m going to grab the day, grab a coffee, grab a shower, grab grab grab because tomorrow is hopefully another day where I can wake up and ask sclero “what are you up to today ?” xo

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    Hi, I’m new here but not new to Autoimmune Disease(s) I have Scleroderma morphea , Fibro, etc . Anyone here with Morphea ?

    #MixedConnectiveTissueDiseaseMCTD

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    That getting sucked in feeling! Having a good heart sometimes gets us in a whirlpool of disappointment.

    #photographyastherapy #Scleroderma #Transplant #ChronicIlless