Hi (in my best Ross Gellar voice),
I’m not really sure where to begin…
I’ve been having a difficult time finding a support group, because I have multiple health challenges, and until now, I haven’t found one place where I could talk about all of them.
I was diagnosed with MS in June 2008. Then in October 2013 I had a fall in the shower that resulted in incomplete paraplegia (L4-L5). Around 2014, I started having difficulty swallowing, and beginning in the spring of 2016 I began having extreme digestive system issues… it got so bad, that I ended up losing about 150 lbs due to starvation/malnutrition, which resulted in a diagnosis of IBS in 2018, followed by feeding tube surgery in March 2020 (J tube). With the exception of an extremely small list of foods— namely rice cakes, potatoes, and soy yogurt, and beverages— namely ginger ale, decaf tea, and cranberry juice, I am 100% dependent upon my feeding tube for nutrition, hydration, and medication (crush & flush— I crush my pills and flush them through my tube. I also take some liquid medications orally.). In the spring of 2021 I received an intrathecal Baclofen pain pump, as well as a Hickman’s port, because my veins are small and difficult. And my most recent surgery took place in January 2024, after having sustained several falls, which further damaged my spinal cord, causing both bladder and bowel incontinence. I am now a double ostomate— the new owner of both a colostomy stoma and a urostomy stoma; my neurogenic bladder and sigmoid colon were both removed. And lastly (so far), I’ve been experiencing hearing loss, which is worse in my left ear. At my last PCM visit, my NP examined my ears, which had remained clogged for about 5-6 months, despite my attempts to unclog them with Debrox. She was able to unclog my right ear in her office, but she couldn’t even see inside my left ear, as she mentioned that my ear canal is curved, and referred me to an ENT specialist (appointment in August 2024). Sounds are muffled/distant, and more pronounced on the left side, which is somewhat confusing to me, as both ears seem to have unclogged and clogged up again on their own within the past 9+ months. I did have an ENT appt scheduled for earlier this year, but had to reschedule, because I was still having difficulty with properly attaching my ostomy pouches, and thus was experiencing embarrassing leaks.
I’m a 44 y/o disabled veteran and SAHM. I have 4 kids— 3 of whom are young adults (18, 22, and 24). My youngest is 14, and is homeschooled. I do enjoy homeschooling, but it was pretty much my only option, as all of my medical issues would frequently place me in the hospital for either scheduled appointments/surgeries or emergency visits. My children’s school district was unwilling to work with me, and would frequently mark them as truant, because they’d often have to miss school in order for me to make it to my appointments (otherwise, I might not have been able to get them picked up on time, or they might’ve had to remain absent until I was well enough to drive again.). I do have help— my 35 y/o brother lives with me, and is a great help; my 22 y/o and 18 y/o also still live at home with me. I mainly struggle with depression, anxiety, and feelings of inadequacy, as finding employment is extremely difficult, and I have unfortunately experienced the emotional pain of being ostracized. My medications often make me drowsy, and my pain levels can become extremely high. Also, my fine motor skills aren’t the best. I’m reaching out for support, as well as any ideas for hobbies, employment opportunities, or even possible small business ideas that could generate passive income that I could possibly explore. Thanks so much for having me! I hope to have finally found “my tribe” in this group!