Hi, my name is Gemma. I've been diagnosed with. I am living with a family of healthy people which I thank God for daily. However, they have a hard time being supportive of my struggles and I have a hard time asking for help.
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ChronicLymeDisease # Small Joint Arthritis # Osteoarthritis #DegenerativeDiscDisease #sjogren's Syndrome
People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.
Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.
Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.
Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.
Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.
Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).
My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.
Chris
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#RaynaudsPhenomenon #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying
I think I would rather go to the dentist than go shopping for pants. With Fibromyalgia (particularly allodynia) and spinal osteoarthritis, shopping has become a much-dreaded activity. Yesterday I braved the mall to find a pair of pants that would be suitable for hanging out and work while being most importantly comfortable! Two and a half hours later and I did walk out with pants, but only after 5 trips to the change room to find the right comfort level (as little pressure as possible) and many pictures to my sister to confirm the right fit (not too baggie). Uff let me tell you, it was an ordeal. One good hack, if you'd call it that, was shopping with a slight flare. It kept me in check so that I didn't get too ambitious with what I could handle!
Does anyone else have a similar experience clothing shopping? Please feel free to share tips or adaptative clothing brands that you would recommend.
There I am... On my bed... In the fetal position again.
My fingers covering my face as tears run into my palms from the pain erupting in every muscle, tendon, and bone in my body.
The pain is nothing new... I'm used to it, but then there's this pain... That hits every area at once and reminds me of how bad it can really get.
Then I start thinking about the future... How much worse it will get with age... All the surgeries ahead of me...
And the hopelessness comes rushing in... The frustration... The feelings of zero self worth.
Where is my place in a society that places your value on what your physical health?
I'm lost tonight... Caught in a cycle of dread and grief. Dread for what lies ahead and grief for what I've lost of myself so far.
And I wish I had someone to wrap their arms around me as I release this anguish... But the stress of companionship seems to outweigh the joy.
Who wants someone who cancels more than they show up? Someone who's always exhausted and constantly in pain?
Just thinking of it exhausts me.
For now... It seems easier to lie here... With my pain and bear it on my own.
#EhlersDanlosSyndrome #HEDS #Hypophosphatasia #softbones #MyalgicEncephalomyelitis #OrthostaticHypotension #Osteoarthritis #RareDisease #GeneticDisorder #BipolarDisorder #ComplexPosttraumaticStressDisorder
Hi everyone, I REALLY need to know I am not alone or going crazy! I have Fibromyalgia, Rheumatoid and Osteoarthritis, a degenerative joint disease and now most likely diabetes. I have had nerve damage for 30 years so I am familiar with that miserable pain. Lately my feet are turning red, swelling, rashes appearing on my feet, ankles and legs. I have so many things wrong with me- and taking so many different problems I am not sure what these symptoms should be attributed to… anyone? everyone? Does anyone have these feet issues?!? Meg #Fibromyalgia #rheumatoid #Osteoarthritis #redblisteredfeet 🙃
Hi, my name is Survivalmode. I'm here because
I am struggling to cope with so many symtoms from my illness. Was diagnosed with fms, cfs, spinal stenosis 3 years ago after suffering many years and recently osteoarthritis in my knees and wrists. I was getting next to no help from my last gp , basically just given painkillers and told to get on with it. I have recently changed my gp but have yet to get proper help . I feel like my symtoms are getting worse and daily life has become such a struggle. Like many , I was a very active person, worked 2 jobs , worked out almost daily , walked miles , was always going out and generally living life . Now I'm constantly exhausted, worrying about my dad and trying to be there for him , trying to be there for my daughter who has bpd and trying to make time for my son and grandson . I'm not only physically exhausted but mentally too aswell as emotionally. I'm in a constant battle with myself everyday. Everything seems such a fight to be heard, listened too or sometimes even believed. Unsure where I go from here so hoping anyone can help with tips , or things that have helped you.
Here’s a way to turn a not-so-fun experience of bad sleep into a fun game in the morning.
#badsleep #bingo #ChronicPain #Endometriosis #Hypothyroidism #Osteoarthritis #Sleep #Pain #morning #positive #Brightside #creative #problemsolving
Im 58 & struggle with unrelenting depression, Sleep apnea (currently untreated due to Ins problems) Fibromyalgia 17 years. I am affected by Degenerative Disk Disease, Osteoarthritis & severe Spinal Stenosis. I am just now 3.5 months post-op a large neck surgery. 8 level laminectomy & 2 titanium rod and screw fusion. Fusion from C2–T2. I have little side to side turning ability for my head but I am in nowhere near the pain I was in before.
My issue I am So tired of being so tired. But it’s beyond tired. I’m exhausted. I’m depressed that I’m so exhausted, which makes my depression worse. I literally wake up most of the time more tired than before I went to bed. I wake up with barely enough energy to get dressed. My hygiene has taken a nose dive. My depression is soaring. I’m almost too tired to care anymore.
I’m tired.
My husband and I are flying to see family at the end of this month. In a concise nutshell, L4 & L5 advanced spinal stenosis, herniated disc(s), osteoarthritis in both knees. Steroid shots in back went well. Tried steroid shots (Dec '99 and June '22). Both steroid & gel shots relieved nothing. Taking Gabapentin and prescribed lidocaine patches. Seeing pain management in just over a week. Hoping, praying, and not sure what to expect.....
I know I will require a wheelchair during flight transfers and layover. Can anyone recommend travel tips? I'm presently using a cane daily and am severely limited in mobility.
#SpinalStenosis #TravelTips
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