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Bone Scan Day #ChronicPain #Backinjury #BackPain #RheumatoidArthritis #MastCellActivationDisorder

Felt a little defeated today, had to get another PET scan with Radioactive dye. Since my 6th surgery in April, I’ve had swelling in my back and increased bone & breakthrough pain. We are checking for stress fractures from my last surgery.
I didn’t know that 6.5 years after my injury & accident, I would still be searching just an ounce of pain relief😔I’m on a waiting list for a new type of stem cell procedure in my disc.
It just feels hard…
I want to be happy, outgoing, dating, working, getting married, having a social life, experience life’s joys, become a mom, I’m already a fur mom♥️I just don’t have the energy, the pain barely allows me to get through simple tasks each day. How do you make energy allowance for social activities when your symptoms are at an all time high?

For now, I’m going to keep doing whatever I can to find that magic thing that helps reduce my pain. Because I still feel a glimmer of hope that it’s out there 🪄✨

#BackPain #Backinjury #ChronicPain #RheumatoidArthritis #MastCellActivationDisorder #AnkylosingSpondylitis #Intractablepain #Anxiety #SpinalFusion #sacroilitis

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Gratitude for things large and small

When I let our family dog, a black Labradoodle named Winston out today, I took what felt like a huge risk: I ventured outside with him instead of just letting him out! Walking cautiously into the heat and humidity, I stepped onto the grass fully aware the ground was uneven, and felt it gently give way under my feet. It felt good to be out there, the dog happily rolling in the grass, and to feel the breeze in my hair.
Why is this so significant? Like many of you, I have hypermobile Ehlers-Danlos Syndrome with a host of co-morbidities. At 74, instead of enjoying my 'sunset' years exploring the world and enjoying friends, I spend most days holed up in my room, propped in the bed reading, watching TV or writing. I've been inside so much I may be getting moldy. It's a situation that leads to depression but that's a story on its own.
So, why did I venture out on these ridiculously wobbly legs? Besides longing for fresh air and birdsong, I wanted to see if I could find a way down to the swimming pool since I cannot use the steps.
I've studied the side yard, which is uneven, in the past. This time, I may have found a way to address the problem, but it will require assistance. And there is the nexus of the problem. Though my spirit is willing and quite creative at times, my body will not cooperate and I hate asking for help.
It's a disability story we've all lived, isn't it? If our conditions worsen, or we face new problems all our building blocks have to be reorganized to accommodate the new situation. No matter what we're dealing with change is a problem, but it may also bring solutions. If I can help to make it down to the pool on occasion, perhaps I'll be able to do other things. I won't know until I try.

#HEDS #Osteoarthritis #juvenileArtritis #shoulder replacement #Lymphedema #lipededma #ChronicDepression #chronic Fatigue #chronic Pain, #Fibromyalgia #TMJ #SpinalFusion #DeConditioning #IBD


So much stuff!!!

I have been having a really hard time and it’s been a reallly long year for my family.
About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

When I was younger my brother more than once sexually assaulted me.
I don’t know if it actually considered that
I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

So the situation is idkw but after he had his stroke I just couldn’t speak to him.
I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
He has been trying to get in contact with me but I have thwarted contact.

My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

#SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD


I Need Some Positive Words ... Feeling a little down ...

What is something positive that you could share with a chick that needs to feel a little more upbeat? I want to get out of this funk so much. Anything POSITIVE or encouraging or motivating is welcome. Or if you need to vent, that's okay, too!

#Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Narcolepsy #prolactinoma #sibo #smallintestine bacteriaovergrowthsibo #RaynaudsPhenomenon #LeukocytoclasticVasculitis
#SpinalStenosis #Lumbarfusion #SpinalFusion


Anyone with #PosturalOrthostaticTachycardiaSyndrome ran a fever 🤒 when water in a shower has been run over your head?

Do any of you #Potsie s run a fever when you take a shower? Spike in heartrate? Drop in blood pressure? You think that you may pass out? But, if you take a bath it isn't as bad, but you find your hygiene suffering? I find that even taking a bath, I have to cover my head with water. What do you do to get through this? I'm on medication, but I can't go on a higher dose cuz of side effects. You know how people feel so "refreshed" and "revitalized" after a shower; that's not me. I feel such a itchy and sticky feeling - like I had just gotten back from the gym (and I don't use hot water - so it's not dry skin) - does anyone else have this? or my heartrate goes even higher afterwards and during. It's not when I get my body wet, just my head. Or I will run a temperature about 100°F for no other reason. And no hot water. Does this happen to you, too? I absolutely hate the way that a shower makes me feel in regards to physical symptoms. I hate that I can't take a shower before a doctor's appointment, because then I'd run a fever when I got there and they'd make me get a covid test (which would normally make sense - so I just don't take a chance).

So, who else with #PosturalOrthostaticTachycardiaSyndrome or any other #ChronicIllness has a terrible reaction to water being ran over top your head? Horrible, huh?!

#Anxiety #Depression #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion #Potsie #BipolarDisorder #Bipolar1Disorder

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Is anyone else scared to sleep with the lights out?

My sleep doctor has a fit everytime that we discuss this. But, trauma has caused me to need to sleep with the lights on. Does anyone else have this problem?Even a lamp won't do. I feel like the light is a warm blanket. Does anyone have any suggestions for getting through this? My sleep hygiene is horrible 😫.

#Anxiety #Depression #BipolarDisorder #PTSD #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #Undiagnosed #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Upallnight #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion

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What's your FAVORITE comfort beverage? Mine is Chicory Coffee ☕️!!!!!

So pull up a mug/glass/cup and chill with the Shanster!!!! Allow yourself to take some comfort in yourself and enjoy a special warm or cold beverage that meets your fancy!!!! 😃😃😃😃😃

#Anxiety #Depression #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #Undiagnosed #COVID19 #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #funactivities #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion #Comfort #warmth #Love #caring

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Thoracic Spine Surgery

A little over a week ago, I had emergency surgery on my thoracic spine. I had a fusion and lamenectomy on T5-T9 and one disc removed. Prior to surgery, I lost the ability to walk and I had urinary/bowel issues.

Surgery on the thoracic spine is more rare than other areas and more complicated and risky. There wasn’t much choice in my case. I had posterior surgery.

It’s probably the toughest surgery I’ve ever had. My blood pressure dropped during surgery and my recovery has been good, but slow. I’m walking again with the aid of a walker and I still deal with neurogenic bowel and bladder issues, but there is hope that those will go away as nerves heal.

I’m hoping others who have had or are facing this surgery will find this post. I’m glad I had my surgery, but I never would have had it if I hadn’t gotten to the point of hearing paralysis. #SpinalCordInjury #SpinalFusion #SpinalSurgery #SpinalStenosis #spinal

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Someone Share Something HAPPY with me cuz I am feeling a little Down

Hi All! I am relatively new here and I need some motivation and happy thoughts sent my way! One of my friends ditched me the other day and told me that, I was annoying and hasn't spoken to me since. I am taking this hard. I want to be positive and am hoping that you guys could tell me about all the happy things going on with you ❤️!!!! Happy and fun hobbies! Anything that just makes you smile 😃! Maybe music 🎶? Anything really? I just need some cheerful words!

#Anxiety #Depression #Bipolar1Disorder #BipolarDisorder #PsoriaticArthritis #Narcolepsy #Gastroparesis #small intestine bacteria overgrowth sibo #sibo #sbbo #ObsessiveCompulsiveDisorder #Undiagnosed #COVID19 #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #funactivities #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion