Hi, my name is DeadStar. I’m here because
#MightyTogether #ChronicIllness #ChronicPain #ChronicFatigue #RareDisease #InvisibleIllness #Disability #DisabilityInclusion #DisabilityRights #piawareness #PrimaryImmunodeficiency #CommonVariableImmuneDeficiency #zebrastrong #IVIG ##Spoonie #spooniesupport #Arthritis #ComplexPosttraumaticStressDisorder #Comorbidities #Anxiety #Agoraphobia
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This is my way of giving back to the rare disease community. 💞
dearwarriors.com
Hey Mighty Fam! #MightyTogether
Long time no type! So as the worlds been ending. My body has been falling apart ( what’s new lol! 😅). Between managing my #UndifferentiatedConnectiveTissueDisease ( UCTD ) , my #CVID , and getting use to life on #IVIG . ( holy cow us sick folks use a lot of acronyms! 😂). A tumor that has been causing pain in my upper thigh for about a year. Decided to become utterly exrusiating. And having a history of #Sarcoma ( DFSP). You can imagine the emotional rollercoaster this sucker has taken me on. My sarcoma doc refused to remove it because it “shouldn’t hurt “ . But after getting horribly misdiagnosed from my “second opinon surgeon” and being sent up to him. He FINALLY agreed to do the dang surgery ! So I’m getting this bad boy cut out on Wednesday. But my body is prone to complications.. and because of #COVID19 my #Caretaker has to stay in the car in the cancer center parking lot. And I will .. for the first time EVER be “ flying solo” for surgery 😳. ( gulp!). So life has been crazy but you .. my mighty family are always on my mind! I hope to share another article.. and more thoughts with you soon! ❤️❤️
I’m now presumed positive for #COVID19 as my symptoms hit all the criteria and my swabs were sent in today. Dr said it could take over a week and in the mean time I will like continue to get increasingly more sick... so fun.
I thought I was so cautious. I’m just terrified. Luckily still at home as I have a home nebulizer and inhalers. I live 2 mins from my hospital. Being immunosuppressed im safer here unless I really can’t breathe.
We also decided to reschedule our wedding so we’re spreading that news. Such a sad mess.
Hope others are staying healthy.
#RheumatoidArthritis #Asthma #Depression #BorderlinePersonalityDisorder #immunosuppressed #IVIG #COVID19
Little kid conversations at the park today
“ I’m beach boy.. so I can turn into any animal that is green.. like a polar bear! “
- listening to a boy dressed as black panther and a boy who claims to be Thanos discussing who truly has all the stones 😂
- Watching my 4 year old niece flirt shamelessly with 6 year old black panther 😂
Girl causally yells from the playground “ Mom .. I ate Popcorn !”
My 3 year old niece
“ I want to race a boy!”
3 minutes later. Slides down slide with a boy she just met. And excitedly exclaims
“ He is my BEST friend!”
I once again feel like I’m getting a cold. ( but I’ve decided that feeling is just going to keep recycling till the #IVIG kicks in fully )
My body aches. I felt like I needed a nap after taking a bath and doing a batch of laundry.
I just physically don’t feel good
But today here I am once again.
Soaking up the Sun like a lizard . In a way hoping the vitamin C might magically cure me. . Well atleast cure my spring fever 😂
I’m so glad more sunshine is going to bring more days like this.
It’s weird having a mind that’s so active. But a body that’s so.. not.
Today mentally I wanted to literally do handstands in the sun.
But then had to limp and struggle and was downright exhausted basically faking to “run” a round of “ Red light .. Green Light “ with my nieces.
Some days the reality hits you that it’s weird being this young and feeling this old.
But if my body has taught me anything. It’s compromise.
When you can’t run.
Be the one who yells “ RED LIGHT “
“ Green Light “! Yellow light!”
In a way that makes your nieces errupt with laughter.
When you can’t be the one who runs around and plays.
You can sit in the cave 😂.
Have very mysterious blue woodchips piled on top of you.
And gratefully have your sister help you out of the cave.
When you realize you are 6”1 with a bum leg. And that entrance to the cave is WAY to close to the ground 😂
I guess today was one of those reminders that .. Life isn’t going to be the way you pictured it.
But you can still make that picture beautiful ❤️
🐷
Now I can tell you all the big exciting thing!
MY IVIG WAS APPROVED BY MY INSURANCE!!!!
( insert angel chorus here!)
And pending one more approval thing that could possibly mess it up. It is scheduled for NEXT WEDNESDAY!
You could possibly wonder
“ How did the heavens litterally open, ( when Megan’s insurance sucks so bad,) and a super expensive treatment was approved .”
And the answer is .. someone my long time “readers “ may remember.
My insurance “ angel “ Dr. L .
You know the one who got the Mayo Clinic . And basically every treatment there approved for me.
I never wanted to bug him again after all he did for me.
But when I got a mychart from my immunology office. Stating a big long appeal process was starting.
I had a feeling I should call Dr. L.
Just to see if he still worked there.
And surprisingly he did.
I left a message on his machine basically stating the whole situation starting with..
“ Hey. Remember me from like 4 years ago.. and how you basically saved my life.. how would feel about doing that again ?”
“I promise if you help me I won’t call for at-least another 4 years 😂😂.. well atleast I’ll try not to “
Let’s just say He got my message..
Then being the angel he is..
Reviewed my charts
Then went and personally talked to the pharmacy department of my
Insurance agency’s.
Called me back, and told me not to even worry because I need this treatment and he got it approved.
He also told me he was STOKED to hear from me , and to call for his help ANY time. And just to sometimes call him and tell him how I’m doing.
( I told you.. he is the GREATEST human being that has ever worked in a medical insurance place)
During a hard time, I was once again sent an Angel .
(I can’t explain how grateful I am for Dr, L. And just my incredible immunology office. )
And once again, I’m feeling hope trickle into my veins.. and I’m unsure of what to do with it . 😂❤️.
Did you know IVIG is suppose to work similar in your body to a corticosteroid... aka the treatment that’s currently keeping me alive ?
And is suppose to be way less dangerous .
somehow I’ve let myself get sick. I’ve had a raging respiratory infection for 10+ days now. I’m on a second antibiotic now since the first didn’t axe it. I’m still struggling to breathe and having massive pain on the left side of my face. just crazy. I’m so annoyed. after starting ivig treatments I’ve been doing so well and this just feels like a huge step back. So much sinus pressure, blood and coughing.
just complaining! yay flu season!
#CommonVariableImmuneDeficiency #IVIG #sinusproblems #infections #frustrations #antibiotics
Sent from app I noticed their was wasn’t any patient tips online or on The Mighty. Getting a port can be really overwhelming and I wish I had these tips in the beginning.
1. Their are so many options for supplies. If you don’t like your needle or dressing just ask your infusion center or DME company.
2. You can be completely in control of your port care or not. I personally access my own port at home because that is what make me the most comfortable, but if thats not your thing its ok. I do recommend to ask a healthcare professional(a nurse) to explain/teach basic aseptic technique so that know when to call someone out.
3. This is not to scare you, but sepsis and fibrin sheath/blood clots are ALWAYS a possibility don’t be afraid call out someone if their not using correct sterile protocol or heparin(unless told otherwise) a embarrassed nurse is waaaay better than being in the ICU because you have sepsis.
4. talk to your doctor about what the plan is in case you have issue with your port.
5. If your accessed multiple days or weeks at a time you’ll need to figure out your shower schedule or lack their of since you can’t get your port wet while it’s accessed. This is totally dependent on your preference. You can buy a detachable shower or disposable covers that are supposed to keep water out. Some DME companies will provide them if you ask. What I do is wash my hair as needed in the sink and use wipes or a wet wash cloth everywhere else (except my port site) to get some sense of cleanliness.
6. Most people don’t care or notice that you have port. I’ve have a port for all most a year. I don’t think I’ve had anyone ask or stare at my port even when accessed. Even if they did so what.
7. If someone misses your port more than once, twice at most then ask for someone else.
I hope this helps someone. If anyone has questions let me know. #ChronicIllness #IVIG #LivingWithPOTS #IVsaline #TPN #Dysautonomia
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