Shannon Adams

@shannon-adams | contributor
Crohn's Disease, Rheumatoid Arthritis, and Ehlers Danlos Syndrome. The list goes on, but still I fight. Learn more about Crohn’s and Colitis at www.ccfa.org.
Community Voices

Best Walker/Rollator for EDS

I've been having a lot of trouble walking without mobility aids recently. I have platform crutches that I use all the time and love, but they're a bit bulky. We have several weddings we're going to be traveling for in the near future. I'm thinking about getting a rollator, but I'm not really sure what to look for. Recommendations?

#Hypermobility #HEDS #EhlersDanlosSyndrome

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Community Voices
Community Voices

New Group for Chicagoland

I recently started a Facebook group called "Service Exchange for People with Disabilities in Chicago." The idea is to create a tight knit community that helps and supports each other. I'm hoping we will be able to help each other out with things like rides to appointments, cleaning the house, etc. It's for people who identify as disabled as well as their loved ones in the Chicago area (including surrounding suburbs). If you're interested, please join!

#Disabled #Disability #EhlersDanlosSyndrome #Hypermobility #AutoimmuneDisease #RheumatoidArthritis #CrohnsDisease #InflammatoryBowelDiseaseIBD #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Chicagoland #Chicago

Community Voices

It's so frustrating to watch your disability get worse. I've actually been doing pretty well lately, but then I threw out my back this week because of SI joint instability thanks to #hypermobileehlers-DanlosSyndrome(hEDS). The weather has also been damp and cold, so my #RheumatoidArthritis decided to join in on the fun. Using my cane to help my SI instability was messing with my hand and knee on the other side! I found some crutches that have been helpful, but my PT recommended having platform crutches on hand for when this type of thing happens. And, of course, those are extremely hard to get with insurance and I'm trying to figure it out. Not really looking for anything (except maybe suggestions for aid purchasing smart crutches). Just wanted to vent to people I know understand! #EhlersDanlosSyndrome #HypermobileTypeEDS #Arthritis #Disability #MobilityAids #AutoimmuneDisease

4 people are talking about this
Community Voices

It's so frustrating to watch your disability get worse. I've actually been doing pretty well lately, but then I threw out my back this week because of SI joint instability thanks to #hypermobileehlers-DanlosSyndrome(hEDS). The weather has also been damp and cold, so my #RheumatoidArthritis decided to join in on the fun. Using my cane to help my SI instability was messing with my hand and knee on the other side! I found some crutches that have been helpful, but my PT recommended having platform crutches on hand for when this type of thing happens. And, of course, those are extremely hard to get with insurance and I'm trying to figure it out. Not really looking for anything (except maybe suggestions for aid purchasing smart crutches). Just wanted to vent to people I know understand! #EhlersDanlosSyndrome #HypermobileTypeEDS #Arthritis #Disability #MobilityAids #AutoimmuneDisease

4 people are talking about this

What People Living With Crohn's Disease Want You to Know

Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes inflammation in the digestive system, but it’s a complicated chronic illness that affects so much more than the amount of time you spend in the restroom. People with Crohn’s disease may also experience abdominal pain, fever, fatigue, mouth sores and a reduced appetite — so life with Crohn’s can be painful and hard to cope with. Crohn’s disease is more common than you may think — it affects approximately 500,000 Americans. Most people with Crohn’s are diagnosed as young adults, which can make living with the condition even more challenging to manage as they navigate life changes and their health. It’s important to listen to people with Crohn’s disease in order to understand how best to support them. We asked members of our Mighty community what they want others to know about life with Crohn’s. Here’s what they had to say: 1. “It’s not just a ‘pooping’ disease.  Severe fatigue and the side effects from immunosuppressants are my worst symptoms.” 2. “Crohn’s disease often [involves] symptoms outside of the digestive tract. I’ve dealt with extreme fatigue, psoriasis, and eye inflammation [because of my Crohn’s].” 3. “We always have to weigh when to push ourselves versus when to rest. It’s a constant battle between ‘I can’t let this condition rule my life’ and ‘I have to listen to my body.’” 4. “I can eat the same thing [every day], but [how I feel afterward] will be different [every day].” 5. “Sometimes flares happen [all of a sudden] — you’re feeling pretty [well] and then WHAM — [Crohn’s takes over].” 6. “Choosing not to eat foods that cause flare-ups does not make me a picky eater.” 7. “It’s more than just diarrhea [every] now and then.” 8. “Living with [Crohn’s disease] for a long time can cause [serious] mental [illnesses like] medical PTSD.” 9. “I have almost no digestive issues [from Crohn’s disease], yet many other areas of my body are [affected in ways] you cannot see from the outside.” 10. “Medications [to control Crohn’s disease] can just stop working for you for no reason.” 11. “When I say I need a toilet, it means right now, not in a minute!” 12. “[Living with Crohn’s disease can be] exhausting even when you are doing well.” 13. “I look fine. I am not fine.” 14. “I’m doing my best every day.” 15. “Being a friend [who] learns about Crohn’s [can make someone with it] feel so loved.” 16. “I wouldn’t have wanted to know about all of the complications [from Crohn’s disease] when I was first diagnosed, but I would [have wanted] to know you can still enjoy life.”

Community Voices

Concerned w/ COVID vaccine

#LivingWithPOTS Have not taken vaccine yet. Now some that have taken it are having symptoms of POTS what would you do?

7 people are talking about this
Community Voices

Is anyone else terrified of Covid shots? I know people said the side effects were unbearable, last long. I have muscle and joint, back pain, colitis

15 people are talking about this
Community Voices

ADHD Medication Benefits #adhd

I am waiting for an assessment for ADHD, I'm pretty sure I've got it and thought meds would help. But I'm seeing things online where people are on meds but still have severe symptoms. So do meds actually help? Is there any point taking them? Or could someone explain how they work on the brain? The more I try and Google the more overwhelmed and confused I get. Thanks #adhd

7 people are talking about this
Community Voices

Covid Positive

Hi Mighties, I just got a routine covid test yesterday because I'm having a C-section on Friday. It came back positive completely unexpectedly. My husband and I both got our second shots of Moderna a month ago and we're still very careful about what we do and where we go. I have no idea how I was exposed. I have Crohn's Disease, Rheumatoid Arthritis, Asthma, SVT, and EDS. I am immunocompromised. So I know I may not have mounted as strong of a response as others. I'm just really worried and scared. This isn't how I wanted to welcome our little one into the world. I don't have any symptoms. So I'm really hoping I won't have any, but I'm still terrified because I've been told this entire pandemic that I'm high risk for complications. I'm not sure what I'm looking for here. Maybe some reassurance that it'll all be OK and/or experiences from anyone who has gone through the same thing. No anti-vaxxers or false/misleading information please. #COVID19 #Pregnancy #pregnantcoronavirus #CrohnsDisease #InflammatoryBowelDiseaseIBD #RheumatoidArthritis #EhlersDanlosSyndrome #SupraventricularTachycardia #Asthma #RareDisease #Immunocompromised

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