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Quinoa bowl with kale, bacon, and pomegranate seeds. I toasted the quinoa in the bacon grease and then cooked it in the same pan to get that sweet, sweet sodium while being relatively healthy. πŸ₯“πŸ₯— #posturalorthostatictachycardiasyndrome #POTS #highsodiumdiet #hypovolemia #lowbloodvolume #MCAS #mastcellactivationsyndrome #bulkcooking #foodallergylife #organic #quinoa #quinoabowl #kale #organicquinoa #pomegranateseeds #bacon #bowl #bacongrease #cookedinbacongrease #kalebowl #onceaweekcooking #nospoonscooking #dinner
Quinoa bowl with kale, bacon, and pomegranate seeds. I toasted the quinoa in the bacon grease and then cooked it in the same pan to get that sweet, sweet sodium while being relatively healthy. πŸ₯“πŸ₯— #posturalorthostatictachycardiasyndrome  #POTS  #highsodiumdiet  #hypovolemia  #lowbloodvolume  #MCAS  #mastcellactivationsyndrome  #bulkcooking  #foodallergylife  #organic  #quinoa  #quinoabowl  #kale  #organicquinoa  #pomegranateseeds  #bacon  #bowl  #bacongrease  #cookedinbacongrease  #kalebowl  #onceaweekcooking  #nospoonscooking  #dinner 
What do my Fitbit, Salt packets and Smart Water all have in common? They kept me from passing out today! Hit up my blog to read the details: Link in bio. πŸ’•
What do my Fitbit, Salt packets and Smart Water all have in common? They kept me from passing out today! Hit up my blog to read the details: Link in bio. πŸ’•
The joys of getting blood drawn when you struggle with low blood pressure...
It's been almost 6 hours and I only just got warm again. The color still hasn't fully returned to my lips, but I'm getting there. At least the dizzy spells seem to have abated. 
More water. More food. More rest. Repeat until no longer feeling like crap.

#dysautonomia #POTS #lowbloodpressure #lowbloodvolume #bloodwork #AVampireAttackedMe #ImDownAQuart #chronicillness #invisibleillness #butyoudontlooksick #sickbutinvisible
The joys of getting blood drawn when you struggle with low blood pressure... It's been almost 6 hours and I only just got warm again. The color still hasn't fully returned to my lips, but I'm getting there. At least the dizzy spells seem to have abated. More water. More food. More rest. Repeat until no longer feeling like crap. #dysautonomia  #POTS  #lowbloodpressure  #lowbloodvolume  #bloodwork  #AVampireAttackedMe  #ImDownAQuart  #chronicillness  #invisibleillness  #butyoudontlooksick  #sickbutinvisible 
When you run out of Gatorade and excitedly realize you have some Oral Rehydration Salts left! πŸ™ŒπŸ’ͺ Not perfect but it will hold me over! #POTS #posturalorthostatictachycardiasyndrome #oralrehydrationsalts #spoonielife #chronicillnesswarrior #normalyte #disability #hypovolemia #tachycardia  #lowbloodvolume #salineinfusion #powerport
POTS: when your body doesn’t circulate blood effectively, sometimes you have to help it along. This is a recovery position for me. When my feet are elevated and my head is not- it’s a good day πŸ˜‚ If you ever find me passed out- lift my legs to help me get blood back to my ❀️ and 🧠 
P.s. No, I don’t shave- get over it.
#POTS #preloadfailure #posturalorthostatictachycardiasyndrome #tachycardia #chronicillness #spoonielife #spooniestrong #hypovolemia #lowbloodvolume #tachycardia #powerport #salineinfusion #disabilityawareness #idontshave #lifewithchronicillness #spoontheory #dysautonomia
POTS: when your body doesn’t circulate blood effectively, sometimes you have to help it along. This is a recovery position for me. When my feet are elevated and my head is not- it’s a good day πŸ˜‚ If you ever find me passed out- lift my legs to help me get blood back to my ❀️ and 🧠 P.s. No, I don’t shave- get over it. #POTS  #preloadfailure  #posturalorthostatictachycardiasyndrome  #tachycardia  #chronicillness  #spoonielife  #spooniestrong  #hypovolemia  #lowbloodvolume  #tachycardia  #powerport  #salineinfusion  #disabilityawareness  #idontshave  #lifewithchronicillness  #spoontheory  #dysautonomia 
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.

#savetheACA #saveobamacare #savemedicaid #savemedicare #allergies #allergytesting #MCAS #mastcell #mastcellactivationsyndrome #dontrepeal #thanksObama #mastcellactivation #masto #POTS #posturalorthostatictachycardiasyndrome #spoonie #lowbloodpressure #lowbloodvolume #chronicillness #callyourrepresentatives #callyourreps #saveACA
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. #savetheACA  #saveobamacare  #savemedicaid  #savemedicare  #allergies  #allergytesting  #MCAS  #mastcell  #mastcellactivationsyndrome  #dontrepeal  #thanksObama  #mastcellactivation  #masto  #POTS  #posturalorthostatictachycardiasyndrome  #spoonie  #lowbloodpressure  #lowbloodvolume  #chronicillness  #callyourrepresentatives  #callyourreps  #saveACA 
Staring at the bedroom ceiling 
My reward for pushing too hard yesterday.
Staring at the bedroom ceiling My reward for pushing too hard yesterday.
If one more bloody doctor orders one more repeat unnecessary redundant liver & kidney function test, I'm gonna lose it. 
#mecfs #spoonie #bloods #homevisit #getthefuckawayfrommyveins #mykidneysarefine #getarealbiomarker #lowbloodvolume #pots
Today I celebrate gratitude. Most of us live so well, and yet so fast. This years events rolled me raw. Stripped my life right back to what matters most. Next year I resolve to slow down, and fully enjoy it. Soak up this sunshine, colour, sparkle, white noise full of childish giggles, lyrical guitar and crickets chirping. Even these dated bricks of Fremantle πŸ™ˆ
πŸΉβ˜€οΈπŸŒΈπŸ‰πŸπŸ‘£πŸƒπŸŒΊπŸ­
It's been a long walk, but there's so much yet to do ✌🏼thanks y'all for your support this year πŸ˜˜πŸŽ—πŸ»πŸ™πŸΌ #eternallygrateful #newyearseve #hiphiphooray #iheartfreo #fightcancer #teamsusie #fightcancertogether #upwardsandonwards #lymphangiestasia #chronicillness #healthiswealth #foodismedicine #lowbloodvolume #cancersurvivor #lovemyfamily #gratitude #newyearsresolutions #summerinperth #perthisok πŸ‘ŒπŸΌ
Today I celebrate gratitude. Most of us live so well, and yet so fast. This years events rolled me raw. Stripped my life right back to what matters most. Next year I resolve to slow down, and fully enjoy it. Soak up this sunshine, colour, sparkle, white noise full of childish giggles, lyrical guitar and crickets chirping. Even these dated bricks of Fremantle πŸ™ˆ πŸΉβ˜€οΈπŸŒΈπŸ‰πŸπŸ‘£πŸƒπŸŒΊπŸ­ It's been a long walk, but there's so much yet to do ✌🏼thanks y'all for your support this year πŸ˜˜πŸŽ—πŸ»πŸ™πŸΌ #eternallygrateful  #newyearseve  #hiphiphooray  #iheartfreo  #fightcancer  #teamsusie  #fightcancertogether  #upwardsandonwards  #lymphangiestasia  #chronicillness  #healthiswealth  #foodismedicine  #lowbloodvolume  #cancersurvivor  #lovemyfamily  #gratitude  #newyearsresolutions  #summerinperth  #perthisok  πŸ‘ŒπŸΌ
πŸ€•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 πŸ™„ & branded me with a red wrist band [oh yes and ankle band πŸ–•πŸ½which is supposed to alert medical staff I have an "allergy"πŸ‘ŒπŸ½]. Finally. I think I have worked pretty hard for that colour. Its oooonly the gazzilionith hospital admission in my entire life πŸ˜’. 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 πŸ™ŒπŸ½πŸ­β˜€οΈπŸŒˆ
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 βœ”οΈπŸ₯
The best thing is I still feel a little bit human. Plus I don't have cancer. You cant get better than that βœŒπŸΌοΈπŸŽ—πŸ˜ #teamsusie #fightcancer #melanoma #surgery #cancersurvivor #lymphangiestasia #lowbloodvolume #chronicillness #rarediseases #elasticcollagen #hypovolemia #godisgood #upwardsandonwards #hiphiphooray #healthiswealth #ihadcancer
πŸ€•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 πŸ™„ & branded me with a red wrist band [oh yes and ankle band πŸ–•πŸ½which is supposed to alert medical staff I have an "allergy"πŸ‘ŒπŸ½]. Finally. I think I have worked pretty hard for that colour. Its oooonly the gazzilionith hospital admission in my entire life πŸ˜’. 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 πŸ™ŒπŸ½πŸ­β˜€οΈπŸŒˆ 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 βœ”οΈπŸ₯ The best thing is I still feel a little bit human. Plus I don't have cancer. You cant get better than that βœŒπŸΌοΈπŸŽ—πŸ˜ #teamsusie  #fightcancer  #melanoma  #surgery  #cancersurvivor  #lymphangiestasia  #lowbloodvolume  #chronicillness  #rarediseases  #elasticcollagen  #hypovolemia  #godisgood  #upwardsandonwards  #hiphiphooray  #healthiswealth  #ihadcancer 
EXERCISE. EAT. REPEAT. βœŒπŸ½οΈπŸ‹πŸ»β€β™€οΈβ€οΈ
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#storyofmylife πŸ˜… is it worth it? You may ask. Well, besides from being the girl who couldn't walk, used a commode & had a 'risk of falling' band wrapped around her wrist, I've recently doubled the amount of sit-ups I can do in 30secs & have bounced my way towards better, stronger bones [now am only on the EDGE of osteoporosis 😁πŸ’ͺ🏽] #workinprogress #healthiswealth #foodismedicine #lymphangiectasia #lowbloodvolume #fightcancer #melanoma #cancersurvivor #osteoporosis #exercise #chronicillness #upwardsandonwards #hiphooray #teamsusie #yougotthis πŸ‘ŠπŸΌ
EXERCISE. EAT. REPEAT. βœŒπŸ½οΈπŸ‹πŸ»β€β™€οΈβ€οΈ . . . #storyofmylife  πŸ˜… is it worth it? You may ask. Well, besides from being the girl who couldn't walk, used a commode & had a 'risk of falling' band wrapped around her wrist, I've recently doubled the amount of sit-ups I can do in 30secs & have bounced my way towards better, stronger bones [now am only on the EDGE of osteoporosis 😁πŸ’ͺ🏽] #workinprogress  #healthiswealth  #foodismedicine  #lymphangiectasia  #lowbloodvolume  #fightcancer  #melanoma  #cancersurvivor  #osteoporosis  #exercise  #chronicillness  #upwardsandonwards  #hiphooray  #teamsusie  #yougotthis  πŸ‘ŠπŸΌ
Blood draw kicked my a$$ today @holtorfmed So, now, I'm just hanging with my girlie... #lowbloodvolume #mecfsproblems #pwme #endmecfs #stillhoping #answersplease
@normalyte was nice enough to send me free samples of their regular #NormaLyte flavors and their new #NormaLytePURE (one if which I tried already last night). They are generously donating 10% of the sales of NormaLyte PURE to @dysautonomiaintl to help raise awareness and fund research.

#POTS #posturalorthostatictachycardiasyndrome #electrolytereplacement #electrolytedrink #hydrate #lowbloodvolume #dehydration #dysautonomia #dysautonomiaawareness #fundpotsresearch #turquoisetuesday #turquoisetuesdays #hydration #electrolyes #morelytesthanyourbodyhasroomfor
@normalyte was nice enough to send me free samples of their regular #NormaLyte  flavors and their new #NormaLytePURE  (one if which I tried already last night). They are generously donating 10% of the sales of NormaLyte PURE to @dysautonomiaintl to help raise awareness and fund research. #POTS  #posturalorthostatictachycardiasyndrome  #electrolytereplacement  #electrolytedrink  #hydrate  #lowbloodvolume  #dehydration  #dysautonomia  #dysautonomiaawareness  #fundpotsresearch  #turquoisetuesday  #turquoisetuesdays  #hydration  #electrolyes  #morelytesthanyourbodyhasroomfor 
Short list of #medications many #psychmeds that can cause or  worsen #dystonia #tardivedyskensia  #dyskensia #neurolepticmalignantsyndrome #seizures #myocolonus #abi #AcquiredBrainInjury #stroke #dysarthria  all of which I had and left without medicalcare I needed. Originally orescribed for #PMS adverse reactions ignored and #MyalgicEncephalomyelitis. #lowbloodvolume #braindamage #pwme #sensoryoverload #insomnia #basilganglia
When your 15 minute lab appointment turns into 2 hours and counting because of low blood pressureπŸ™„πŸ˜‘ These are the ugly moments of POTS/Dysautonomia that make me angry, frustrated and even more determined. #lowbloodvolume #POTS #Dysautonomia #stupidheat
When your 15 minute lab appointment turns into 2 hours and counting because of low blood pressureπŸ™„πŸ˜‘ These are the ugly moments of POTS/Dysautonomia that make me angry, frustrated and even more determined. #lowbloodvolume  #POTS  #Dysautonomia  #stupidheat 
My main view since 1994 from bed, mostly house bed-confined.75%. 2003 98% bed  #pwne #myalgicencephalomyelitis #Fibromyalgia #dystonia #acquiredbraininjury #stroke #isolation #seizures #dyskenisa  #myocoluns #window #blueskys #sucks #dysarthria #pots #lowbloodvolume
#millionsmissing @millionsmissing  where I've existed the most since 1994, my view. 1990: #pwme Myalgic Encephalomyelitis #Fibromyalgia  #lowbloodvolume  #dysarthria #dystonia #Acquired Brain Injury #hepc #stroke #dyskenisa  #savingcheryl #myoclonus
In a #POTS tailspin this weekend, so my boyfriend was awesome and got me some salty survival essentials, including two flavors of Pedialyte and the one boxed soup I can eat with my allergies. I am now bunkered down for #GameOfThrones.

#POTSproblems #POTSsolutions #pedialyte #MCAS #smartfood #butternutsquashsoup #stouffersmac #stouffersmacaroniandcheese #dehydration #fatigue #posturalorthostatictachycardiasyndrome #stouffers #insicknessandinhealth #lowbloodvolume #spoonie
In a #POTS  tailspin this weekend, so my boyfriend was awesome and got me some salty survival essentials, including two flavors of Pedialyte and the one boxed soup I can eat with my allergies. I am now bunkered down for #GameOfThrones . #POTSproblems  #POTSsolutions  #pedialyte  #MCAS  #smartfood  #butternutsquashsoup  #stouffersmac  #stouffersmacaroniandcheese  #dehydration  #fatigue  #posturalorthostatictachycardiasyndrome  #stouffers  #insicknessandinhealth  #lowbloodvolume  #spoonie 
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 achesπŸ’ƒπŸ» dont forget the testosterone cream, silicone ointment & daily doses of salt water & epo injections! πŸ’‰ then down to the doc to check my electrolytes haven't plummeted again. 
#lymphangiectasia #sarcoma #lowpotassium #lowbloodvolume #healthiswealth #fightcancer πŸ‘ŠπŸΌπŸŒ»
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 achesπŸ’ƒπŸ» dont forget the testosterone cream, silicone ointment & daily doses of salt water & epo injections! πŸ’‰ then down to the doc to check my electrolytes haven't plummeted again. #lymphangiectasia  #sarcoma  #lowpotassium  #lowbloodvolume  #healthiswealth  #fightcancer  πŸ‘ŠπŸΌπŸŒ»
#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
#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!

A x
#mcs #multiplechemicalsensitivity #cfs #chronicfatiguesyndrome #blooddraw #healingjourney #amazingameliahill #healameliaslife
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! A x #mcs  #multiplechemicalsensitivity  #cfs  #chronicfatiguesyndrome  #blooddraw  #healingjourney  #amazingameliahill  #healameliaslife 
πŸ’‰Painful iv attempts and iv, but fluids made me new! The first nurse didn't take heed to my advice about my tricky veins😼 #dysautonomiadiva #dysautonomiaawareness #chronicallydehydrated #lowbloodvolume admitted with a 155/102 bp and it didn't drop all that much before I was discharged but #orthostatichypotension much #potsstrong #potsie and this was the best ER visit to date. The nurse and ER Doctor totally were familiar with #pots #posturalorthostatictachycardiasyndrome πŸ™πŸ’™πŸ’™πŸ’™ πŸŽƒ
πŸ’‰Painful iv attempts and iv, but fluids made me new! The first nurse didn't take heed to my advice about my tricky veins😼 #dysautonomiadiva  #dysautonomiaawareness  #chronicallydehydrated  #lowbloodvolume  admitted with a 155/102 bp and it didn't drop all that much before I was discharged but #orthostatichypotension  much #potsstrong  #potsie  and this was the best ER visit to date. The nurse and ER Doctor totally were familiar with #pots  #posturalorthostatictachycardiasyndrome  πŸ™πŸ’™πŸ’™πŸ’™ πŸŽƒ
last week without the port! I'm going to get my port on Wednesday and I can't wait,my veins have had enough! πŸ’‰πŸ’§ #dysautonomia #posturalorthostatictachycardiasyndrome #ivport #saline #ivinfusions #lowbloodvolume #faint #hyperadrenergicpots #hyperpots #lowbloodpressure #spoonie #spooniestrong #spoons
first day of a new round of #ivinfusions, nothing like a relapse to spice things up... #dysautonomia #pots #posturalorthostatictachycardiasyndrome #faint #fainting #lowbloodpressure #lowbloodvolume #tachycardia
never a dull freaking moment with #dysautonomia.... just needed to boost my fluids.... #pots #posturalorthostatictachycardiasyndrome #potsy #stoppots #ivfluids #iv #servicedog #er #fainting #faint #lowbloodpressure #tachycardia #Lowbloodvolume
If you notice the clock, it was 8am. Since my individual #aquatictherapy session this morning, my body has felt as though it's running a marathon! |with or without me!| I have become deconditioned due to my being 'exercise intolerant'. My autonomic nervous system disorder (dysautonomia) is the primary reason I unwillingly decreased my physical efforts, resulting in muscle loss, including heart muscles. Imagine leaving a gravity free environment, to take up residence back where gravity rules.. Well it would be tiring, and take a bit of conditioning. My goals are quite simple to one without limitation, but I simply want to gain muscle control and minimal strength...however my sympathetic and parasympathetic nervous systems are at war! #stuckinthemiddlewithyou #posturalorthostatictachycardiasyndrome #orthostatichypotension #pots #potsie #painsomnia #painwarrior #autonomicdysfunction #neuropathy #neuropathicpain #spoonie #spooniesunite #decondition #decondition #dysautonomia #fibromyalgia #fibrowarrior #lupus #potsprobs #bloodpulling #lowbloodvolume #poorcirculation #OMG !! πŸ’•βœŒοΈSitting pretty, but always moving! >_<
If you notice the clock, it was 8am. Since my individual #aquatictherapy  session this morning, my body has felt as though it's running a marathon! |with or without me!| I have become deconditioned due to my being 'exercise intolerant'. My autonomic nervous system disorder (dysautonomia) is the primary reason I unwillingly decreased my physical efforts, resulting in muscle loss, including heart muscles. Imagine leaving a gravity free environment, to take up residence back where gravity rules.. Well it would be tiring, and take a bit of conditioning. My goals are quite simple to one without limitation, but I simply want to gain muscle control and minimal strength...however my sympathetic and parasympathetic nervous systems are at war! #stuckinthemiddlewithyou  #posturalorthostatictachycardiasyndrome  #orthostatichypotension  #pots  #potsie  #painsomnia  #painwarrior  #autonomicdysfunction  #neuropathy  #neuropathicpain  #spoonie  #spooniesunite  #decondition  #decondition  #dysautonomia  #fibromyalgia  #fibrowarrior  #lupus  #potsprobs  #bloodpulling  #lowbloodvolume  #poorcirculation  #OMG  !! πŸ’•βœŒοΈSitting pretty, but always moving! >_<
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
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 
ugghhhhh😷 went out with friends last night and missed my night meds... stuck in my wheelchair until further notice. I was flare free for almost a month, and doing so well... it's so frustrating when a relapse sets u back a few steps. also dealing with overwhelming nausea, cannt keep anything in my system, dumping so hardπŸ˜– gonna try and go food shopping while @iambearkalb is home, but I might have to sit this one out... it also sucks when neighbors and other shoppers point out that I was walking yesterday. I'm aware of that thanks😠 I wouldn't be sitting here unless It was my only option. and today it is my only option! #invisibleillness #wheelchair #dysautonomia #posturalorthostatictachycardiasyndrome #posturalorthostatictachycardia #orthostatichypotension #orthostaticintolerance #neurocardiogenicsyncope #vasovagalsyncope #lowbloodvolume #dumpingsyndrome #gastroparesis #servicedog #fibromyalgia #sickofbeingsick #sickgirlproblems #sickkidproblems #spoonje #spoonielife #spoonieprobs #potsprobs #pots #potsy #
ugghhhhh😷 went out with friends last night and missed my night meds... stuck in my wheelchair until further notice. I was flare free for almost a month, and doing so well... it's so frustrating when a relapse sets u back a few steps. also dealing with overwhelming nausea, cannt keep anything in my system, dumping so hardπŸ˜– gonna try and go food shopping while @iambearkalb is home, but I might have to sit this one out... it also sucks when neighbors and other shoppers point out that I was walking yesterday. I'm aware of that thanks😠 I wouldn't be sitting here unless It was my only option. and today it is my only option! #invisibleillness  #wheelchair  #dysautonomia  #posturalorthostatictachycardiasyndrome  #posturalorthostatictachycardia  #orthostatichypotension  #orthostaticintolerance  #neurocardiogenicsyncope  #vasovagalsyncope  #lowbloodvolume  #dumpingsyndrome  #gastroparesis  #servicedog  #fibromyalgia  #sickofbeingsick  #sickgirlproblems  #sickkidproblems  #spoonje  #spoonielife  #spoonieprobs  #potsprobs  #pots  #potsy  #
new diagnosis = achlorhydria. means I have low stomach acid and can't digest protein. it's part of the autonomic nervous system so yeah... (similar to celiac in symptoms, which is why they made the mistake) I have to take these with every meal containing animal protein. let's see if it works!!! πŸ‘ #achlorhydria #lowstomachacid #chronicdiarrhea #dysautonomia #lowbloodvolume #tachycardia #potsy #ibs #celiac
okay... motion sickness on top of high heart rate is no fun... my heart doesn't like long car rides. my legs r purpleπŸ˜” if we didn't need to be home before midnight we would stop ever hour or so and put my legs up to get some blood back into my head... laying as flat as i can in this car for now... #fightthefaint #syncope #ncs #spoonieproblems #dysautonomia #potsyprobs #tachycardia #hypotension #lowbloodpressure #lowbloodvolume #fml
it just keeps getting better.... I'm barely able to use my phone. I can't get up without passing out. I can't even eat without choking... I'm so over being sick. like I would do anything to be healthy and to have a normal life😭 it doesn't usually get to me but i was doing so well and now I'm back to square oneπŸ˜” #justsickofit #chronicpain #chronicillness #dysautonomia #hypotension #lowbloodpressure #lowbloodvolume #spoonie #spoonielife #sickofbeingsick #invisibleillness
it just keeps getting better.... I'm barely able to use my phone. I can't get up without passing out. I can't even eat without choking... I'm so over being sick. like I would do anything to be healthy and to have a normal life😭 it doesn't usually get to me but i was doing so well and now I'm back to square oneπŸ˜” #justsickofit  #chronicpain  #chronicillness  #dysautonomia  #hypotension  #lowbloodpressure  #lowbloodvolume  #spoonie  #spoonielife  #sickofbeingsick  #invisibleillness 
#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??!!
#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 ??!!
My body won't give blood. Got an iv but not enough pressure for labs. Running fluids and will try again. #infusions #2daysbehind #imoutofblood #dehydrated #ivfluids #hydration #pots #dysautonomia #lowbloodvolume
Soaking up my fluids like a fish. Still no port. But the ladies here are good. Here's to staying out of the ER. And attempting at to be more productive in life while I find some answers. One good thing about a small town is that the nurses ask me what I want. πŸ’– #dysautonomia #pots #potsy #potsyproblems #gp #gastroparesis #gogreenforgp #gne #gpact #ivfluids #dehydration #lowbloodvolume #nomoreer #hope #chronicillness #chronicmeansforever #invisableillnessawarness #dysautonomiaawarenessmonth #myview #mylife #spoonies
Soaking up my fluids like a fish. Still no port. But the ladies here are good. Here's to staying out of the ER. And attempting at to be more productive in life while I find some answers. One good thing about a small town is that the nurses ask me what I want. πŸ’– #dysautonomia  #pots  #potsy  #potsyproblems  #gp  #gastroparesis  #gogreenforgp  #gne  #gpact  #ivfluids  #dehydration  #lowbloodvolume  #nomoreer  #hope  #chronicillness  #chronicmeansforever  #invisableillnessawarness  #dysautonomiaawarenessmonth  #myview  #mylife  #spoonies