Y'all got through Monday - give yourself a pat on the back 💜 This necklace is a Depop exclusive but there are other mental health-related items on our website, and we're donating a percentage of the profits going to @theblurtfoundation 💘
If you ever look at yourself in a photo or a mirror and feel shit... An think how come I don't look like that person or this person. And wonder why you bother... Stop!!!!
These two photos were taken a second apart... No filters, not effects... One is in good light, one is in bad. I'm 33, and feel 93...somedays in some light I look it. In others I don't.
Embrace the greys and just learn to smile!
Third tattoo done by @heath.laramie , an incredible artist! Beyond happy with the way this tattoo came out.
Dysautonomia/POTS has been a real struggle learning to deal with life completely being changed. From the daily lightheaded, dizziness, chronic fatigue, blacking out, blood not returning to my heart like it should, tachycardia, and so on. Everyday is a fight with some kind of challenge. “But you don’t look sick”. Thankful to find a doctor who specializes in POTS and has helped me learn a lot. I hope to be a voice to others to lean about Dysautonomia and the hell it can put you through, and to keep fighting.
Today is a new day. Totally had a major blessing to be able to do yoga for 4 days. Now the question becomes. What’s next? I have a major neck pain I woke up with. Think I slept wrong? So I’ll start over. Go slow. Move slow. Flow slow. Im posting these pics not because they are awesome. Im posting them to remind myself and others no matter the #chronicillness we can still find moments or days to fall in love with ourselves. Find one thing you can shower yourself with love today. I’m looking into swimming classes. Yoga classes I need to undo this neck again. Being stuck is not good. I encourage you to find something today that will help you get unstuck. Be your best version of you. Happy Monday. ❤️#carpediem#yoga#yogaeverydamnday#plantbased#invisableillness#medicalmedium#try
I have to admit, today I'm really struggling. Getting out of bed was mentally challenging for me. Didn't want to move. Having a Fibro flare. I suffer from many eye diseases and my Uveitis is flaring up and I can barely see. The metal in my back aches.
But I woke up. There's a roof over my head. I have a career and a job to do today. I woke up to an amazing partner and dog. Even though I hurt, I can move. Even though my eyes ache and I can barely see, I can see something. Even though my anxiety is so freaking high right now.. I got off my ass.
I will not allow my body to beat me today. It's Monday and I want to start the week off good. Is today going to be a bad day? Honestly, it's going to be shitty. But this chick chooses to push through it!
Happy early birthday Hanj (Alex) 🎉
I made this blanket for him, but was keeping it a secret.
It was the first time We we’re together since it has been completed and the last time before his birthday.
He loved to and says he is planning to hang it on his wall when he gets to college.
I have been loving working on my crocheting projects. Except for the added hand activity. For the most part everything is okay, but my right thumb has been having trouble. I can’t seem to keep it in place and it is a bit swollen.
I don’t know how to keep it in or make it stay in.
I love having my hands and mind busy but I might need to take a break if I can’t find a way to keep my thumb in.
This week is going to be a busy one with doctors appointments and next week we get ready for Donner. Hopefully my thumb (and the rest of my body) will cooperate so things are not a bigger struggle than they are already going to be.
My room may be a hot mess but I am really comfortable doing my crocheting in my room now
I really like to sit curled up when I work on projects and the past few days I have been working on them quite a bit. The problem was my butt was hurting and my hips were extra popping.
Solution, sit in a video game chair since it is meant to be sat in for long periods of time.
Right now it kind of sounds like there is a bear in my belly. It is definitely not comfortable or easy to relax while this is happening but hopefully it is my insides working
That would be a really good thing because things have been at a stand still.
I do not have cancer! The bone marrow biopsy looked perfect, other than completely absent iron stores. I do admit that I would have rather had a name for my condition and something to actually treat, as bad as that sounds. My labs have continued to decline, however. They show anemia, rising widespread inflammation, clotting issues, and muscle breakdown. The hematologist believes I probably have some active GI bleeding and inflammation causing the anemia these last few months. She also believed that rheumatology held most of the answers with an autoimmune disease. She expressed that they both needed to get on the ball, otherwise the anemia would persist. My labs this far have pointed to a problem with my genes (mitochondrial/metabolic disorder), where certain ones have been “damaged.” Thank you for your prayers! I was lucky I had my mom with me the beginning of this last trip! I was EXTREMELY sick, but did much better this last week. Mom was a trooper and drove the whole time she was there, until she flew home. God blessed with me a wonderful mom. 💜 I made it home Wednesday night after another grueling 9hr drive. But the strongest emotion I am experiencing right now is fury... the X-Games is only an hour away from Mayo this week! I can’t believe I missed it! WORST PLANNING EVER.
this picture here shows one of the many reasons why I am marrying this man in 28 days!!! My body is not doing what it should today and my walking strength is limited, so when I walked from the living room to the kitchen and was too exhausted to stand any longer he came down and laid next to me on the floor until I could get back up 👍😘 #invisableillness#potssyndrome#ilovemyman#keepfighting#sickchick#rareillness
5 random facts about me //
I just thought I’d share a bit more about myself so that all of you can get to know me a bit better. I want to share my story, the good and the bad!
🌱 I LOVE to sing, it’s my passion actually. Before I got sick I used to perform and I have had singing lessons for 7 years. My boyfriend plays the guitar and we make music together in our spare time.
🌱 I got diagnosed with Lyme disease in January 2017 even though I was bit by a tick when I was eight and had symptoms from that age.
🌱 I suffered from an eating disorder from the age of 10 until 23. I was a chubby kid and ever since people started calling me ‘fat’ or even ‘miss piggy’ it became my mission in life to be skinny. I can now finally say that I do NOT have an eating disorder anymore. 🌱 I have a dog named Bono and a cat named Roca. The two get along really well! Back in 2012 my ex-boyfriend and I saved my cat in Spain. She was only a few days old and she was abandoned but luckily we found her and brought her home.
🌱 I used to workout like crazy and I mean 6 times a week hardcore strength training and HIIT. I was workout addicted and didn’t care when my body screamed for rest. I will never go back to this way of living!
🌱 I’m 26 years old, my birthday is June 11th so I’m a gemini. How many of you are gemini?
So that’s a bit about me. I would love to get to know you guys better! What are your hobbies or what is your passion? Do you have any pets?
Photo by: @sannejennes_photography .
In another otherwise disastrous hospital appointment earlier this week my specialist nurse said something that’s really had me thinking all week. When asked how I was doing I replied “ not too bad”. But then she asked are you really okay? To which I replied as I always do “im fine!!, my symptoms and pain could be and have been a lot worse”, I am generally doing better on this medication. To which she said but are you sure you’ve not just forgotten what it’s like to feel normal so accept any day that isn’t awful as feeling better? ⚡️well actually yes! ⚡️This has really made me think this week that a lot of people with a chronic illness simply forget what it’s like to feel normal and settle for anything that’s not feeling totally awful. #dontsettle#fightformore#fundacure#cronicillness#crohns#whatisnormal#health#crohnsdisease#crohnsandcolitisuk#invisableillness#silentstruggle#dontjudge
Optimism is the faith that lead to achievement - Helen Keller
There are a couple of things that have been in the works the past few days neither of which I am going to go into detail on but both of which have the possibility of finding more answers.
Which then makes me both nervous and excited.
Excited because answers are answers, which means putting a name to what is happening.
But then there is the fear of the reality that answers does not mean that there will be a fix or even a treatment.
I am scared that as with my last diagnosis, having a name for it and realizing that ther is only symptom management sent me into a kind of fog. I wouldn’t call it a depression t was just a loss of that hope that what I was dealing with was “fixable”. I have become almost comfortable not knowing what I am dealing with because then in my mind there is infinite numbers of possibilities for things that could “fix it”. The problem with this logic is, many things once they have a name have a treatment. So getting to a name would mean having a handful of things that could actually work and not having a name is just living life without the possibly helpful solution.
As it has been over a year since my last diagnosis (that wasn’t just a description of a symptom) I feel that these things are happening in the right time. I am at a place mentally where can face the risk of the diagnosis not leading to treatment. As well as at a place physically where it is time to move forward to find something that is able to direct us in our treatment decisions because as of right now strictly symptom management is not going all that well and treatment options are virtually non existent (as we don’t know what direction to head in).
The progression of my treatment today. All started and ended well so that’s what matters. Reactions the first infusion are reasonably common. Hopefully next week there will be no reaction. Let’s seen how this effects my numbers!