Autoimmune Disease

Something illness related I had to learn this year was to swallow my pride and use mobility aids .

I use to RELISH in the fact my illness was invisible.

I flat out lied about it to friends and family for YEARS and when the news of my illness was ( for lack of a better word ) “leaked . I had immense pride when people thought I was “ faking it “

But as I’ve gotten sicker .
It’s gotten impossible to hide .

For 4 years I’ve had to use supplimental oxygen.
Since Oct when I’m out and about I’ve been reliant on a walker .

And it’s so , emotionally difficult.

It got to the point where I realized I walked looking down . I didn’t check out the cute guy , because “ who the heck would be checking out the girl
Who looks like she is dying “

And then when you add the pity stares , and the completely Inappropriate comments

( like can we make it a rule of thumb to not ask strangers their life expectancy , or tell them how to fix their health )

Sometimes I’ve just wanted to crawl in a hole .

But when I realized the walker was going to be a longer term thing than expected. I made a goal to keep my head high every time I walk it with it ,

When kid give me questioning looks , I wave hi to them and give them the biggest smile I can.

And when I get comments from others talking about themselves with their kid / friend / spouse with oxygen or mobility aids .

And or comments online about how seeing me out and about helped someone feel confident leaving their house with their oxygen or walker .

It means everything. .

I’ll admit it , I’m vain .
I love hair , I love fashion I love makeup . ( I actually really enjoy getting ready )

I love that I’m 6”1 with giant lips and big green cat eyes .

And I a lot of days I deeply struggle with what illness has done to my appearance

But I’m so grateful that illness has taught me that I’m so much more than what’s on the outside ❤️

Through this year of ups and downs , what’s something rare disease / chronic illness has taught you ? #RareDisease #CVID #Epilepsy #MCAS #AutoimmuneDisease #Spoonie .

It’s no secret that stress affects more than our mood. It can take a toll on our mental and physical health as well. You could be embodying stress without even realizing it! If you’re dealing with digestive issues, head pain, fatigue, panic attacks, or high blood pressure that is out of the ordinary for you, and you’ve ruled out all other possible causes, you may be experiencing physical manifestations of stress — even if you’re not sure what’s stressing you out in the first place.

Take a minute to check in with yourself and find where you’re holding tension in your body. Can you identify what’s causing that tension? What can you do to try to relieve some of that stress over the next couple of days?

❤️ P.S. If you need a few ideas to get started, check out this Mighty story that’s full of quick and easy ways to ground yourself when you’re especially stressed or anxious: 15 Grounding Exercises to Manage Stress From Anxiety or Trauma

#MightyMinute #CheckInWithMe #selfcare #PostTraumaticStressDisorder #PTSD #ComplexPosttraumaticStressDisorder #Anxiety #IrritableBowelSyndromeIBS #Migraine #MentalHealth #ChronicPain #ChronicIllness #RareDisease #Disability #Cancer #Caregiving #AutoimmuneDisease

I started wearing compression socks very regularly after I was diagnosed with lupus last summer. The only other times I had worn them were during extended hospital stays, so wearing them on a regular ’ol Tuesday was new for me.

To be honest, I’m mad at myself for resisting them for so long (or perhaps the right phrasing is that I didn't give them very much consideration). But as it turns out, if you get the right kind, they’re comfy! They help keep the swelling down! I can feel my legs all day! Cute patterns DO exist!

So I’m curious about brands you love and can’t live without. My favorite right now is Comrad because they have really soft, low compression options. But they’re not cheap, so I also like the brand fenglaoda for the bright animal prints and reasonable price point (if I’m going to wear them, I might as well have a good time, yes?).

What about you?

#Spoonie #ChronicPain #ChronicIllness #AutoimmuneDisease #POTS #Lupus #Fibromyalgia #EhlersDanlosSyndrome #RareDisease #Disability #RheumatoidArthritis

They’re like a party in your mouth! Not!

Did you know that some toothpaste and mouth rinses containing sodium lauryl sulfate, stress, and certain food sensitivities can lead you to be more susceptible to canker sores? Talk with your doctor if you experience recurring sores or have a sore lasting longer than two weeks.

#hygiene #ChronicPain #ChronicIllness #RareDisease #AutoimmuneDisease #Lupus #Fibromyalgia #selfcare

As defined by the Institute for Functional Medicine, this approach to health is based in systems biology and focuses on identifying and addressing the root cause of disease — from inflammation to vitamin deficiencies. It takes into account one’s genes, environment, and lifestyle (including stress management, nutrition, and movement), but it also blends conventional medicine with more “traditional” or complementary practices and approaches.

In the most simplistic terms, functional medicine treats a patient as a whole person as opposed to dissecting one’s health organ by organ, symptom by symptom.

I’m about to see a functional medicine doctor for the first time after my rheumatologist “dismissed” me from her care after diagnosing me with lupus less than a year ago. (To be clear: I absolutely love her, but her hands are a bit “tied” when it comes to insurance approving the next tier of meds, and I have a dangerous history of medication side effects.)

And like many of you in this community, I’ve had a lot of triggering experiences across the spectrum of holistic practitioners (I once saw someone who wanted me to stop all of my medications cold turkey with absolutely no tapering plan). One of the biggest cons to seeing a functional medicine provider is cost, as it’s entirely out-of-pocket and not covered by my insurance. On the other hand, they’ve been incredibly thorough, validating, kind, and responsive. I still can’t get over the fact that when I call their office, they always answer and help me immediately. (No voicemail? No repeated attempts to communicate via the patient portal?) I’m cautiously hopeful that they’ll help me move in a better direction — I don’t have a ton to lose at this point.

I’d love to hear any tips, advice, or general experiences with functional medicine. What have you tried? What’s worked? What happened?

🤓 P.S. I have found this website to be super helpful when doing my research: www.ifm.org

#Spoonie #Lupus #Migraine #ChronicPain #ChronicIllness #RareDisease #CheckInWithMe #Fibromyalgia #AutoimmuneDisease #Undiagnosed #Caregiving #Cancer