Zebra

#EhlersDanlosSyndrome I’m coming down with something, I have a cough that’s really bothering me and I’m stuffy in my nose. I pray that I don’t have the new strain of Covid! I will feel very horrible because I was around my hospitalized father and he has enough already!

I was sick all the time and by all the time I mean for over twenty years if someone sneezed; I got a sinus infection. My stomach and GI issues were legendary, and not in a good way. It was a running joke I was the girl in the bubble because I was always sick with something.

The irony it turns out is I don’t have a functioning immune system, like the boy in the bubble. My immune system is borrowed (thank you plasma donors for sharing!). Because of that, I need to replace it every 28 days. I’m infusing antibodies to fight off infections and viruses. But those wane every month, and I have no control over what antibodies are in that treatment. So if I come across a bug I have to rely on my own body to fight it off if those antibodies weren’t in my infusion. And with an immune system that doesn’t work right…. Well, you get the gist.

So no, I really don’t have an idea of what it’s like to feel good. My good is most likely your 40-50%, and that is the honest truth.

The reality for me is that I don’t get sick days because that would be most days. And who can afford to take that many days off from life? Most can’t. I can’t.

That’s the thing about invisible illness. On the outside we look just like the person next to you in line at Target. But on the inside, we might feel like you do the day after your fever broke and you’re telling people you’re on the upswing but still need naps during the day. But I’m going to work, running our daughter to activities, going to birthday parties or meetings, washing clothes and decorating for the holidays.

When I actually take a sick day, actually stay home from work or hit pause on any one of the day-to-day activities, I’m most likely at your 15-20%. And usually that lasts about a day before I’m back it because there just isn’t the time to take. Life is happening and when you’re never feeling great, life can’t stop.

The thing is sometimes, sometimes when I hit that moment where I must take a knee it’s usually when there is an activity or commitment or event. And I have to cancel. And I feel horrible. For all the reasons you can imagine. And I feel like I need to explain. But it’s hard to explain the whole thing. It doesn’t make sense when I look normal. And you just saw me at the store or a picture of me and my family the other day on social media. But what you didn’t see was that when I got home, I needed to lay down for 20 minutes because it felt like I ran a marathon, or that I was counting down until bedtime so I could get in bed.

Always being sick has been my norm. But not many people really understand what that means. I hope this shed some light into my world. Now if you’ll excuse me, I’m going to take a sick day.

#RareDisease #PrimaryImmunodeficiency #Zebra

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Good evening! I hope you all had a great week. No matter what you go through, you can choose how you'll respond. In all things, choose to be joyful. No one can take that away.
#chronicillnesswarrior #imjoyful
#patientadvocate #oleyambassador
#Gastroparesis #RareDisease #tpndependent
#EDS #Zebra #Dysautonomia

So today I went to my gastroenterologist and found out I need further evaluation to rule out conditions before settling on ibs and treating that with antispasmodics they said I definitely am a zebra with the complexity of issues autoimmune cardiac mental health and so forth And though I said it in jest it's actually covering up insecurities and paranoia that I'm a fraud and my illnesses are not valid despite true symptoms and extensive meducstins and hospitalizations and procedure ice come to doubt myself because of doctors initially saying fibro and myalgic encephalitis don't exist as a teenager when I just wanted to feel better regardless of it's was mind or body driven but with the schizoaffective this has be become a deep seated paranoia that my doctors are out to expose me as delusional for there own laughs reality testing tells me this isn't true but feelings hard to shake the tests are producing a lot of anxiety like are they giving me placebo is this all a test I know it's just my diseased mind conjuring up these thoughts but his do you other "mighty warriors" cope and quell the obsessive tape of uncertainty playing in your head #schizoaffective #POTS #ChronicFatigueSyndromeampME #granulomaanulare #Zebra just want be back on the Oregon coast so ill try to meditate on that to get to sleeo

#Dysautonomia #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #pelviccongestion #Zebra #ChronicIllnessEDS