#UCTD

[chronicillnesshumor]

[vivre-libre2023]

The guilt I feel on a daily basis for everything I can’t do is absolutely unreal. Why can’t I show up for those who depend on me? Why can’t I lift things that used to be easy? Why am I winded after doing little to nothing? My body is betraying me and I don’t know how much longer I can do this…

[sleepycatmama]

I hate hate hate feeling the arthritic pain in my right shoulder, trying to keep sewing but feeling the pain making it harder and harder. I want to craft! I feel like I'm losing myself when I can't.

[cuterefaction]

Pages 5-8 of 'How I Became Disabled'. Going to go stop existing for a little bit now to recharge. 2/2

[forever-food-and-fandoms]

Hi internet friends. I just want to say chronic illness sucks. It’s summer I want to have fun. But I’m in a giant flair that I thought might be over, but no. Good thing it’s Friday!

[schizoaffectively]

So yesterday's geneticist visit went very well! I got genetic testing for connective tissue things, including EDS. However, I don't meet criteria for Hypermobile EDS because of my med for rheumatic conditions working. And due to lack of known family history of any EDS, it's not high on their expectations for the results.

I am indeed very hypermobile as the geneticist said after examining me, and she ordered an ECG/EKG and an echocardiogram. I got the ECG done there, and the echocardiogram will be done at a later date, since that was more of a referral I think?

Anyways, they think it might be rheumatic connective tissue stuff rather than a genetic cause. I have to wait until around the end of August for my genetic results, though.

Also, I apparently got a dx of Undifferentiated Connective Tissue Disease (UCTD)! So that's interesting!

[christinziogrimmace]

Well I know there’s gotta be some people in the disability community on here, just wondering how many that are active that have a rheumatic disease (UCTD, Lupus, Rheumatoid Arthritis, Sjörgen, etc)

Hi I have Undifferentiated Connective Tissue Disease (UCTD) I found out just before the panini hit, I’m on hydroxycholorquine which helps me manage my symptoms *most* of the time but with the weather getting cold I’ve been experiencing a lot of pain in my leg joints especially my left knee. It sucks. I can only handle doing stuff on my feet for so long before I need to sit or lay down at this point.

[on-a-ray-of-sunshine]

Does anyone in the general POTS/EDS/autoimmune community have experience with tendinitis-feeling pain on the top of the foot?

I’ve been getting pain with a bit of tingling and numbness stretching from my toes up to my ankle across the top of my foot. Sometimes it seems to come on randomly, and sometimes it feels like it’s triggered by pressure on the area like if I’m sleeping on my stomach and the top of my foot is laying against the bed. It happens even when I have not been wearing any shoes all day that could cause pressure.

My ankle on that side has also been more unstable lately and I’ve noticed myself stumbling periodically due to my ankle turning. I’ve had issues already for a couple years with cramping and tightness in my calves and the bottom of both feet especially at night, but this is new.

[nellereadsthings]

Having a chronic, incurable illness that often renders me unable to leave my home for long periods of time has had horrible social consequences. I feel like I am forgetting how to correctly interact with others.

The last 3 years have made me lonely enough to lean back into the sorts of solo hobbies I loved as a child but also angry enough to not feel as if I deserve to enjoy them anymore.

I have so many reviews I’d love to write, books I’d love to finish, videos I’d love to make, projects I’d love to complete but instead I’m here, trying to figure out tumblr for the first time in almost a decade and being annoyed at myself instead.

Maybe the next full moon will be enough to allow me to release the perpetual bitterness.

[chronicillnesshumor]

[yrcanisrunsfromzombies]

2023 and Why I don't Eat Gluten & Dairy Anymore...

Happy Day Errbody!

So last I left it, we caught up on my tumultuous fitness journey of the last 7 years. If you read it, you're amazing and I appreciate you for taking the time! I write like I talk: ALOT.

This post is dedicated to my journey this year. 2022 was recovery from a fractured right scapula and pulled right shoulder, worked on endurance and building strength... and I did that. The workout was rigorous, my diet was all over the place, but I was consistent!

ENJOY and BE PROUD SMALL VICTORIES. I really did. I was grateful I was strong and I was mobile. My shoulder was better than ever. Although sometimes when I work a makeup job, my shoulder would get tired. Regardless, I was running, lifting and indoor bouldering.

However, towards the end of the 2022, I took a promotion at work and it was our busiest time. Learning a new management position AND it being the busy season really took a toll on my rest, diet, fitness regiment and specifically, my immune system. I ate SO MUCH SUGAR AND JUNK because of the stress... and I was really looking forward to my mini vacation: the snowboarding trip in January!

Once I got back from the trip I realized, my left wrist started hurting. I had 2 hard bumps that looked like bug bites emerging on my right shin. I rationalized, "Well, I did fall on my left wrist getting off the lift. I should rest it before hitting the gym back up again. And the bumps are probably from how tight the Snowboarding boots. Maybe the skin was sensitive." After a couple of days, when I woke I felt pain in the same spot, BUT on the right wrist. I KNEW for certain, I did not fall on that wrist. I knew for certain something was amiss.

WHAT A MYSTERY...

I began to really worry when I went on a simple hike. The next day my hips began to hurt in the morning. This is a week after the initial wrist pain. After waking up with pain in both my wrists and hip and having the bumps for 2 weeks, I decided to go to my primary doctor. I knew something was wrong, I was finally listening to my body and taking action. She ordered some blood tests and says it could be a number of things and to wait a couple of weeks as the ‘bruising’ could clear on it's own. During this time I was doing hypnotherapy and shadow work and some were suggesting my trauma was leaving my body and physically manifesting in this pain. I really was hoping this was the case. Cure the trauma, cure the pain, right? It wasn't... as the pain grew and spread to my knees and ankles, every morning I kept losing hope that this was temporary. However, I was in complete denial this maybe permanent too.

The bumps were in my front & back knees and ankles joints, every bend and movement felt like a super painful mosquito bites. I research and found the morning pain in my joints were Arthritis. By mid-end of February, I did a video chat with another doctor who I felt really listened to me. She ordered an ANA blood test which is "a blood test that looks for antinuclear antibodies in your blood. Antibodies are proteins that your immune system makes to fight foreign substances, such as viruses and bacteria. But an antinuclear antibody attacks your own healthy cells instead." (google search) AND x-rays for my wrists. The blood test came back positive and my wrists looked normal except they were inflamed. They referred me to the Rheumatology Department.

Mind you, the whole time I was doing so much research on my own as to what this all could be. The internet told me what I could have before the doctors told me. I was thinking it was Rheumetory Arthritis. What I needed the doctors to tell me is what do these tests really mean!

I saw the Rheumatologist the first week in March, by this time so many bumps in my knees and ankles appeared. Pain in the joints (wrists, elbows, hips, knees & ankles) every morning. She ordered more blood tests to rule out what she thought I had: Lupus. (An inflammatory disease caused when the immune system attacks its own tissues. Lupus (SLE) can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs.) THAT SOUNDS TERRIFYING. It does run in my family as my aunt has it and my mother has Grave's Disease (Graves disease is an autoimmune disorder that involves overactivity of the thyroid (hyperthyroidism)) She also said I definitely had Arthritis and inflammation in the joints. And asked me which I wanted to work on: arthritis or inflammation. She told me the options and I picked arthritis, since this would allow me to at least move my body more painlessly. They started me on Hydroxychloroquine, but it could take weeks to kick in. She also told me to remain physically active by doing alternative workouts like biking and swimming which are easier on the joints. And if the pain was terrible to take, Advil or Tylenol (which I tried my hardest to not take consistently).

(Photo: the worst it’s ever looked and felt)

ALL THIS absolutely broke my heart, I felt like I died inside. Will I be able to lift weights, again? Snowboard, again? Rock climb? Pole Dance, ever again? Are we saying at the age of 34, I can't revisit my favorite physical activities?

And Running? Out of the question! It's terrible on the joints even without arthritis. I didn't know that last time I ran 5K would be the last time... My heart was ripped from me! That was what started this blog so many years ago and now... I can't do it anymore. I mourned me and these activities like they've passed away.

As I awaited the results, I did what she recommended. I got up in completely pain and tried to head to the gym to get my body moving. It was a mental and physical challenge as moving equals pain, but it also helped alleviate it. Tell me...how do I tell my brain this workout is good for it?! That more pain equals less pain?! I felt crippled and what normally took a 5 minute walk to the gym took 15... each step felt like walking on broken glass. The first time at the gym that March, I cried on the rower machine for 30 seconds because it hurt going down the stairs from the cardio area. No one noticed.

Moving my body was/is a part of me, I learned that about myself just a few years before. I really felt like my life was all over. I cried constantly. Was I going to do any activities ever again? Did I do this to myself? Or was this going to happen regardless? So many feelings. I yelled at my parents. I felt like no one understood. I felt my Aunt understood me best. She has Lupus. She and my sister were my biggest support during this time. I kept this from the socials (No ones post when they are sad) and only told those around me like coworkers (they could tell my energy wasn't the same), my immediate family and my aunt. I still felt alone and probably the loneliest I've ever felt. I had to pushed out that feeling because I did have people around me who wanted to help, had to continue working, and I had to rest a lot before a shift. I was fighting myself like my immune system is fighting my body.

My Massage Therapist Angel offered to give me Lymphatic Massages to help with the blockages the inflammation caused. My sister listened to me whenever I was upset. My parents helped with paying medical costs for testing and seeing a specialist. My cat, Emilio, for being annoying and doing things to get me out of bed :P. I could always count on him to get my day started when I feel low, even when I don't want to. It was hard to constantly remind myself how to be grateful.

That is very important to do everyday... even when you don't have anything terrible happening because that could very well be the reason why things aren't so terrible. When I remember I try to write down 3 things I'm grateful for that day and it helps.

I made a phone appointment with Rheumatologist around 2 weeks after my first visit with her, so she could tell me her diagnosis. She asked if I had developed any other specific symptoms like dry mouth and dry eyes. I said no as I was drinking ALOT more water than I was when this year started. She then diagnosed me with Undifferentiated connective tissue disease...

I was like....WHAT IS THAT???

(More like what the fuck is that? But I can’t curse at a doctor)

Well, the doc said something like this:

"Undifferentiated connective tissue disease is a clinical entity defined as serological and clinical manifestations of systemic autoimmune disease, however, not fulfilling any criteria of defined connective tissue disease. This disease is considered a diagnosis of exclusion." (Google)

It sounded like a bullshit diagnosis to me. I don't have any of the specific ones? Just this rando generalization? I was confused, but I felt better having any idea what it is. I think the not knowing was part of the frustration and sadness.

Even feeling this way, I decided to work on my diet. Food is medicine. I had to figure out how to heal this inflammation since the medication can only help so much with that. One day in the beginning of April, the arthritis pain stopped. I kept researching what things cause inflammation. It seemed like everything did! Tomatoes, cheese, & bread are the exact ingredients for a pizza, my favorite food. How was I suppose to navigate that? I found cauliflower or gluten-free crust, vegan cheese and pesto (without cheese) pizza. If I didn't eat that, I ate lots of strawberries, blueberries and blackberries or mandarins if I wanted a dessert or Pad Thai with tofu. I lost a lot of the muscle mass I worked so hard for the year before. I went from weighing 141 to 132 lbs and what I lost was mostly muscle. Then, I looked into finding an Anti-inflammatory Protocol cook book to cook from. This included leaner meats and A LOT of Veggies. I began cooking more for myself between March and April. I sprinkled working out here and there. Now I'm slowly building which I will share. End of April beginning of May, I went back home for a visit and that when my inflammation had completely gone away. I learned that dairy and gluten really flared me up, specifically egg yolks. I also learned my mental health was better than before I got sick. When you fix your gut health, you feel better and you don't think everything is so terrible. Go figure.

I think my digestive system was inflamed before I got sick. I always felt bloated when I drank my protein shake after a workout. I lifted so much weight and never lost any fat. There's dairy in whey protein. My body couldn't handle it anymore. I'm so grateful I figured this out. I wasn't listening to my body. It was telling me all the time this wasn't right, but to me discomfort, exhaustion, and stress were normal.

It was the worst time and pain of my life. Now everything after it doesn't seem as bad. I felt vulnerable, sad,weak, hurt and sensitive. These are things I don’t like feeling. Vulnerability being least favorite. Ya know if I had to pick favorites 😜

When I found out what I have I asked my dad, "Why is this happening to me?" He replied, "This is just life. It's apart of life." Things are going to pop up. This blog is not just a diary to me, but a reminder to whoever that: LIFE IS SO FUCKING LONG. So much is going to happen, there are gonna be ups and downs, pauses and non-stops. You have to be kind and patient with yourself. Sometimes you get in your way by not resting and managing stress. I'm a example of it.

I want to inform whoever is on this journey with me, Physical and Digestive Health are so important for Mental Health. If you are going through something similar or just trying to get back to moving your body or there's a bodily mystery is afoot, be easy on yourself. There will be ups and downs, stops and goes. I hope this is helpful to you in someway and you feel less lonely. You never know what someone is going through.

But now going forward from here, I will post tips and tricks, recipes I love and my progress. Especially now that we are all caught up. Thank you for reading, Darlings!

Until the next post… be patient with yourself🫶🏽

[sleepycatmama]

GAH. My right thumb/wrist is hurting a LOT.

When I first went to a rheumatologist I remember he kept asking about my hands. I was all no, it's my feet and knees! And why yes, I have been having elbow pain. Of course he knew to expect it to be my hands too. And the hands stayed ok for a lot longer, dunno how much of that is purring cats and how much is lots of hand exercise, but .... it has been worsening over time.

I'm cranky because my hand hurts, and I can't stitch any more right now. And I had a disappointing morning. And I feel ... useless right now.

[cuterefaction]

Pages 1-4 of 'How I Became Disabled'. I wanted to do something for Disability Pride Month, and honestly it was a bit difficult to actually write it out. 1/2

[arithmonym]

fun side effect of taking prednisone for an allergic reaction is that my joint pain is GONE right now. is this really how most twentysomethings feel? i’m jealous. :0

[jadedgenasi]

I really, really hate this thing where I wake up and it's hard to focus my eyes, I feel off kilter and strange, the thought of food makes me want to die, but after I've run through all of the possible but unlikely scenarios I go "well I might as well make myself eat SOMETHING" and at first it's terrible and an awful idea, but slowly I start to feel like a person again and I'm SO MAD because I was never hungry! I very emphatically did not want food despite going 15 hours without it, but I wasn't exactly nauseous. I just felt detached and kind of light headed, no hanger or fatigue just. Something Is Wrong And My Hands Are Very Cold. Fucking bullshit.

[nubs-mbee]

I don’t really want UCTD tbh. It’s just not a fun acronym to say, whereas scleroderma is way more fun to say.