I've taken two doses of antihistamines since my allergy testing and downed enough Benadryl to knock out a minivan's worth of children, but my mast cells are still all hot and bothered. My tongue is white and I have hives on my back, chest, and face. I don't really notice my antihistamines working, but hot damn do I notice it when I don't take them. My bp was also low and uncooperative when the nurse took it, which is normal for POTS, but I often have white coat hypertension with new docs and I was all stressed out about the train making me late to the appointment, so I figured it would be high. I know histamine release dilates the blood vessels, which is why POTS flares when the MCAS does, but I guess I never appreciated that my antihistamines did as much for POTS as they do for mast cell stuff. I'd hate to think how bad my symptoms would be without them. So, on that note, call your elected officials and tell them that repealing the ACA and gutting Medicaid or Medicare is a terrible idea. Removing safety nets and access to care doesn't make people more independent. It makes them less independent, less productive, and needlessly sicker. Managing illnesses is hard enough without worrying about whether or not I'll get worse because Paul Ryan has a raging boner for Ayn Rand or Trump feels like sticking it to Obama and doesn't understand how healthcare works.
🤕Today's surgery went down like this: "So it says here you have a food allergy...what is it?" "I cant eat fat". It was the fourth time I was questioned within the space of an hour. "Oh you don't like eating fatty foods?"
. "Kinda like coeliacs cant eat gluten, I cant eat fat" I responded dryly. "My lymphs cant cope with fat". .
"Oh. What are the symptoms?" .
"I have elastic collagen, I fail to absorb nutrients & get really sick. Three years ago I ended up in ICU with total organ failure because of it". She looked surprised and was obviously finally satisfied enough to write the "allergy" down 🙄 & branded me with a red wrist band [oh yes and ankle band 🖕🏽which is supposed to alert medical staff I have an "allergy"👌🏽]. Finally. I think I have worked pretty hard for that colour. Its oooonly the gazzilionith hospital admission in my entire life 😒. Its a real disease out there guys. My body is wired differently to yours. Its not a life style choice. I eat low fat, pop a thousand pills & [try to] exercise frequently because I AM CHOOSING TO LIVE 🙌🏽🍭☀️🌈
I don't mean to sound complaining I just want people to be aware. They can't know if I don't say, right? Soooo good to have this surgery done & dusted ✔️🏥
The best thing is I still feel a little bit human. Plus I don't have cancer. You cant get better than that ✌🏼️🎗😁 #teamsusie#fightcancer#melanoma#surgery#cancersurvivor#lymphangiestasia#lowbloodvolume#chronicillness#rarediseases#elasticcollagen#hypovolemia#godisgood#upwardsandonwards#hiphiphooray#healthiswealth#ihadcancer
When your 15 minute lab appointment turns into 2 hours and counting because of low blood pressure🙄😡 These are the ugly moments of POTS/Dysautonomia that make me angry, frustrated and even more determined. #lowbloodvolume#POTS#Dysautonomia#stupidheat
Since posting my image of my pill box, I have had people questioning "How many pills do you take?!" This is how I kick start my day.
Then more at lunch, more at dinner, and some before bed. Bringing it to a grand total of 32. Thats assuming its a good day, and I don't need an extra dose of potassium or panadol for my migraines & body aches💃🏻 dont forget the testosterone cream, silicone ointment & daily doses of salt water & epo injections! 💉 then down to the doc to check my electrolytes haven't plummeted again.
#transformationtuesday I have VERY few pictures of myself over the last several years, because I was so ashamed of how I looked. (Right or wrong - that is the painful truth). The picture on the left was taken in 2012 at my dad's retirement party; I couldn't decline. The picture on the right is of me a couple of weeks ago. I post this only because maybe it will inspire others to keep the faith in finding answers to their health problems and to persevere in their quests to little by little change the habits they want to change. A big part of changing habits and staying motivated is learning to love yourself no matter what the scale says. You are all beautiful!! You are all deserving of love!! You are all enough and not too much! #wecandohardthings#healthiswealth#lowbloodvolume#nevergiveup
THE WEEK THAT WAS.
I'm definitely glad it's the beginning of a new week. This time last week I was organising a last minute home #dental visit due to a nasty looking tooth infection/abscess (& yes, we're discussing ANOTHER kitchen extraction. Yay.) Intensive daily self-treatment (salt, silver, cell salts & #Meridian work) followed plus two phone calls with doctors to discuss aforementioned #toothinfection /#abscess too.
A scheduled blood draw made an appearance mid week plus mountains of digital paperwork for a phone appointment with a new U.S. doctor too. All made even more fun by negotiating my body through an epically sized Adelaide #heatwave while sporting an epically sized temperature due to, you guessed it, a flippin' tooth infection/abscess!
On the bright side, when the lovely nurse, Helen from #AbbottPathology was here taking my blood, we were remembering when she first started coming over, my body, due to #lowbloodvolume & #lowbloodpressure , could barely manage 1 tube! The blood would literally just trickle out & then totally stop. And it would take me hours to recover. As you can see by the photo above, four tubes, baby! That IS progress!
Did you have an eventful week last week too? Here's to Mondays & here's to the cool change that arrived yesterday! Yay!
Oh you know just hanging out with my jug of pee.
#lifeofasickgirl tech who checked it in was like.....whoa....that's all you got in 24 hours thats not enough.... and here I was excited and all proud because of how much I actually did pee. Ha. #PotsProblems#lowbloodvolume
#infusionday waiting for labs. Curious as to if it show a reason I feel so weak this morning. NO vomiting since last labs and K was given so it had better be up..... Joints have hurt since Tuesday when I got K (it's usually my long bones that hurt, not my joints). I know K effects muscles but could the joint pain be due to that? Watching #LordoftheRings . I bought the bundle for the bus trip but didn't have time to download so now I have all three movies haha. I've actually never fully sat and watched one. I've only seen parts. #pots#labs#gastroparesis#lowk#dehydration#lowbloodvolume#movies#ipad#fluids#saline#isthatdumbledorf ??!!