#hypermobileehlersdanlosspectrumdisorder

MOST RECENT

He won't leave my side at all today and consistently under the covers laying his head on the affected side/leg. I wish he was big enough and had the right personality for SD work. But... He takes care of me at home when needed. I love my lil Isaac💙
#ehlersdanlossyndrome #ehlersdanlos #hEDS #hypermobileehlersdanlosspectrumdisorder #earproblems #deaf #earinfection #painful #titaniumtube #hoffmantube #eartube #earnoseandthroatdoctor
#chronicillness #chronicpain #chronicfatigue #saturday #saturdaymorning #ilovemyfrenchbulldog #frenchbulldogkisses #frenchbulldoglove #isaacjr @isaacjunior_13

Sneak attack Saturday morning kisses. But it's back to bed I go. Didn't sleep hardly much again last night. Had two God awful leg/calf muscle cramps that left me in tears and in general a pissed off back.
Isaac as usual at my side💙❤️💙
#ehlersdanlossyndrome #ehlersdanlos #hEDS #hypermobileehlersdanlosspectrumdisorder #earproblems #deaf #earinfection #painful #titaniumtube #hoffmantube #eartube #earnoseandthroatdoctor
#chronicillness #chronicpain #chronicfatigue #saturday #saturdaymorning #ilovemyfrenchbulldog #frenchbulldogkisses #frenchbulldoglove #isaacjr @isaacjunior_13

Didn't get a chance to update on my ear. So it's reinfected again. I've been battling this since November come to find out. Dr. Griffin looked in my ear and at first mentioned "looks like we will need to replace the titanium tube..." Which means surgery because of the infection. But we didn't go into detail as he suctioned everything he could up then prescribed two different antibiotics for the next 7 days. I go back in on Friday to have it re looked at and suctioned up until the infection clears. That there will tell us if I have to undergo another not so pleasant ear surgery. A very painful one to say the least...
#ears #rightear #earinfection #moreantibiotics #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobileehlersdanlosspectrumdisorder #chronicpain #chronicillness #chronicfatigue

It's barely 4:45am and I have to get up in 2 1/2 hours as my pup Lexi undergoes surgery today to remove her tumor and Judah my boxer has his urine rechecked.
But I can already tell it's going to be a rough day with pain. Having some low back pain and spasms along with continuous right ear pain from an infection I've had since December with no known answers why it's not going away. I'm afraid my ENT will end up having to go in again where I'll have to be put under to look more in depth at my titanium tube (which is in my bone now in my ear.) I'm fearing my body is now trying to reject it although it's been in there since 2014/2015... All I can say is it's painful and not pleasant. I actually think he is in surgery also on Thursdays but hopefully not and I can get seen.
So after the dogs appointment this morning I'll be calling and see what he will want me to do. It's nothing but absolutely frustrating not knowing why it's not clearing... #ehlersdanlossyndrome #ehlersdanlos #hEDS #hypermobileehlersdanlosspectrumdisorder #earproblems #deaf #earinfection #painful #titaniumtube #hoffmantube #eartube #earnoseandthroatdoctor
#chronicillness #chronicpain #chronicfatigue #veterinarian #dogsurgery #tumorremoval

The joys of hypermobility syndrome... Literally in the words of Ed Sheeran when your legs don’t work like they used to before 😂🙈 Had a few rough weeks and they decided they didn’t want to work anymore today 😬 #hypermobility #invisibleillness #invisibleillnessawareness #hypermobileehlersdanlosspectrumdisorder #kankles #needrest #lowbloodpressureproblems #cut #blood #fedup #edsheeran #hypermobilitysyndrome #wheresmyankle #ahhlife #feelingsorryformyself #bloodyhell

So update from this very early morning: I called the radiography department and.... They can't do anything so they have to go to the higher up and *maybe* the incorrect information can be changed🙄 And this is why I hate our radiologist here, they always screw something up!
I called the care coordinator and told him. Tomorrow my doctor is in clinic and he was going to catch up with her and discuss what we talked about, including to please talk to the neurosurgeon. Especially now since it'll take a few weeks before my Lumbar spine MRI report is corrected.
So tomorrow he'll call me back after he talks with her.
She also sounds like she's wanting to switch me over to the Baclofen more so permanently instead of the Valium since it does very little to nothing vs the Baclofen I can tell a difference. For once it's nice to not always be so tense which increases pain. Sticking to 5mgs but I have a feeling when I see her in a few weeks in we will bump it up to 10mgs every 8 hours.
A cold front is coming in with expected rain tonight so since noonish I have been experiencing increased pain in certain locations especially my right shoulder as it keeps gliding out. So I've been icing it.
Isaac hasn't left my side at all today so I have a feeling he senses how I'm feeling. Anyway that's all for now. I'll update again tomorrow after I hear back from the care coordinator. Hopefully it'll come with good news.
#baclofen #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilitysyndrome #hypermobileehlersdanlosspectrumdisorder #chronicpain #chronicillness #chronicfatigue #valium #exhausted #paindemandstobefelt #spinepain #backpain #shoulderpain

Pre Super Bowl, post workout selfie. How does everyone I see on IG not look like a hot mess after their workouts?! Perfect hair, skin and makeup...not this girl!#hotmessexpress #allaboard 🚂 #musclemonday #forearmveins #momswhopowerlift 🏋🏻‍♀️ #girlswhopowerlift #gwpl 💪🏻 #momswholift #iifym #eds #hypermobility #hypermobileehlersdanlosspectrumdisorder

Thought this poem was rather fitting for this updated post since Friday. Although one of my hugest weaknesses is showing emotions/crying/tearing up in front of anyone but if it's anyone; it's been my mom who has seen many of those moments. But I still hold on because every single day is a new day.
But anyway, In my post from Friday I believe I mentioned that my doctor prescribed Baclofen. I've been taking 5mgs every 8 hours and so far I have yet had any of those severe leg/calf cramps BUT my muscles in both legs (mostly my left side) has yet to give up any discomfort from them yet. It's like each one I had only makes my legs hurt more and more.
I question a lot of things and wonder what the hell is causing these IF it's confirmed it's not coming from my back. Although my doctor is rather positive it's coming from my back. I don't think I've yet explained what's going on with my back but basically with no "shock" my degeneration in my L4-S1 has progressed more since July 17'. My L2-3 is herniating but thankfully w/o cord contact so far but who knows in 6 months if it will begin to or not. My L5/S1 has this prominent central fat band that's transversing to the S1 contacting the nerves and pressing along with prior scar tissue. It was explained that I basically have a large lipoma pressing on the nerves and despite the degeneration; it's the probable cause of the back pain that has altered quite a bit of my life. It is something operable so we sent off a referral to a neurosurgeon I've seen before. Crossing fingers he will see me. My doc agreed that she would talk to him and share everything I'm experiencing in hopes it'll give him a better idea of the extent I'm going through.
So I'm crossing fingers. If he won't we will seek for another one.
It's currently 3AM; insomnia at its best along with pain. But later today I'll be calling the radiology department and seeing if they took off the incorrect info & call my care coordinator to let him know as he to will pass the info to my doc. Hopefully also I'll hear something in regards to the neurosurgeon.
That's all I can think of. I'll update when I get a chance.

Thanks for reading if you read it all❤️

Seriously ready to get back to only having #ehlersdanlossyndrome pain without #pregnancydiscomfort on top of it 😫 Last night was fuckin rough. My body would not let me sleep. Baby was having all kinds of fun tumbling and wiggling around in my tummy while mommy was was being tortured by her own body. #Musclespasms, #fibropain, stiff ass joints #arthritis, killer #headache, burning sensation on the whole left side of my body... 😰 the whole nine yards. #flareupdayssuck especially when they start at night when all I wanna do is rest it off and I can't 😭 this is what us #chronicillneswarriors call #painsomnia .
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#vaxxed #vaccinescauseinjury #gardasil #gardasilgirls #gardasilvaccine #educatebeforeyouvaccinate #b1less #hearthiswell #EDS #AADEDS #POTS #MCAD #hypermobility #hypermobileehlersdanlosspectrumdisorder #chronicpain #chronicfatigue #anxiety #depression #mentalillness #thoughtsofsuicide #vaccineinjuredlivesmatter

This is what lax connective tissue looks like. This is an improvement but it’s still all I see when I watch her move. #hypermobileehlersdanlosspectrumdisorder

🤦🏻‍♀️😂 too true! #eds you got me!

Would you invest $37 to find out this is the answer to being out pain? Then don't hesitate and call our office now. 561-409-3594. As always space are limited. #headache #headaches #ehlersdanlossyndrome #migraine #migraines #trigeminalneuralgia #fibromyalgia #tmj #vertigo #highbloodpressure #neckpain #tinnitus #ligamentlaxity #hypermobileehlersdanlosspectrumdisorder #hypermobility

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