Great question! I’m struggling these past few weeks with my medication regimen. There are some medications that you can’t get out of taking without a backup plan. I’ve tried to get off my meds several times since my last surgery and each effort has been disastrous and set me back tenfold. I feel like I’m starting to improve functionally even without fluids. I think I’m at the never looking back point when it comes to central lines and midlines. This is in part due to the fact that testing showed I have blood clotting issues—one of the reasons IV fluids may have helped me may have actually been the multiple shots of blood thinners I had to inject to keep my tubes cleared. I’ll be starting daily aspirin and if my blood test results come back consistently abnormal again in two months we’ll start me on prescription blood thinners. In the meantime I was given my medical marijuana license and I’m hoping that will help ween me off the rest of my pain medication. Massage, rest, staying out of places that could put me in contact with potential infections are also tools and precautions I’m taking to get things under control. It’s journey, but my spirits are high 😁 it’s a fucking wonder what the freedom to take a hot bath ten times a day can do for a woman who had bandages and tubes in her chest and arms for the last five years. #chronicillness#immunedeficiency#dysautonomia#pots#rare#patients#ports#survivingandthriving#medicalmarijuana#massage#chronicpain
I went and saw a musical with my best friend today and had a good time! I even ate a snack in public (very big fear), wassup.💃🏻It would’ve been better if I wasn’t having such a bad pain day- I’ve had a killer headache (tension headache that morphed into a migraine) since I woke up this morning and nothing got rid of it except a hydrocodone, but even then it came back stronger a couple hours later. I try hard every single day to hide the constant pain I am in from my fibromyalgia and osteoarthritis because of not wanting to complain or impact the fun or the mood or seem dramatic or whatever, but god damn, when I’m having a bad pain day it’s hard to focus on anything other than how badly everything hurts and not feel frustrated when I hit a brick wall in my treatment/management of it. Seeing a new rheumatologist soon and holding on to not further self-medicating by the skin of my teeth.🤕Gonna take a hot bath and try and sleep it off. Hope you’re all having a good weekend.💖
BIG NEWS!!!!!! So allie is finally getting her shit together an building a website for people with EDS and chronic illness by people which EDS and chronic illness with quality information beyond “bendy and bruisey” so far I have about Eds, fun stuff that comes with Eds, other helpful websites, news on EDS (which will all be things after I launch the site), a list of the few docs I’ve seen in DC, and the PT I had in KY (soon with reviews after I get info done), products that improve quality of life, OTC medicine that might be good, bracing and taping info, and PT that can be done at home, all with reviews beyond “actually gave me antibiotics for strep” and commenting that can be done by other spoonies who did the thing, or saw the doc.
I for one am sick and tired of spending money on seeing doctors that don’t take Eds seriously, PTs who “pain is gain”, spending $$$ on braces that one person likes but not for the reason I need it. My ultimate goal for this site will be to have a full community of people reviewing products/doctors/PTs/tapping methods so that people can see why people like XYZ and if that’s an issue that you have and if you feel that it actually will (bought wrist braces by recommendation of a doctor, I hate them because they don’t let me move my fingers and dig into my skin, so that’s 20$down the drain but LOVE the one another gave me because I can move my fingers and it doesn’t hurt my skin). Eventually and with help I would love to expand to other lesser known chronic illnesses but can only focus on Eds right now (and I know about it). If anyone would like to help with the site please PM me, especially if you want to write informative info on EDS, parts of it, and problems it causes
Of course this doesn’t replace a doctor but can help people get their shit together and learn and figure out what actually might help them personally.
🌊✨I’ve always found the ocean and the sea calming. It’s my favourite place to just sit, breathe & think.
When I’m in hospital or trying to pee or having a migraine or anytime I don’t want to be where I am, I always visualise I’m on the beach watching the waves or swimming under them.
Where is your happy place? 💭💙