Tagging some who may be interested:
@FrenchMarbles @audienta @emotionalTalker2260 @xandia @azuladragon34 @considerateBunny7436 @enthusiasticTortoise6681 @Goalsforlife
@wonderfulRainbow817
Thanx so much for the tag!
My name is xandia or xan.
I have asthma, (40 years), CPTSD, (34 years), spinal stenosis, (7 years), tibio-calcaneal fusion of the right foot, (34 years), compression fractures T-11 to L-1, (20 years), aortic sclerosis (17 years), and MTHFR (all my life).
@wonderfulRainbow817
How have your friends and family reacted to it?
My family were sad when I lost my ankle bone to an assault. They then became my advocates in making sure I got the proper care I needed. When I had three lung infections my Dad never left my side. Friends felt sympathy for me; I told them I needed them to be there for me; not feel sorry for me. Just because I have a mobility issue and breathing issue doesn't mean I've changed inside. Family and friends realize that I can be who I want to be in spite of a disability.
@wonderfulRainbow817
What is the biggest realization you have had?
That life goes on whether you accept what has happened or not. You can bury your head in the sand or grab the bull by the horns and live your life. No one said it would be easy; and it isn't. But you need to reach down inside of you and find that spark that will allow you to pull yourself up by your bootstraps and continue on living your life.
@wonderfulRainbow817
Where do you see yourself in five year's time?
I see myself retired and enjoying the fruits of my labors. No longer will I have to work so hard. It has taken a toll on my disabilities. But I know I can slowly work through and overcome the toll it has taken on me. I'm not a quitter; I will work to succeed. And then enjoy myself in doing what I want to do.
@wonderfulRainbow817
Have you ever tried any alternative therapies? If so, what? Did they work?
I have tried biofeedback. It is somewhat successful for pain management for my disability when I overdo things. Re-focusing therapy has been successful as well. Acupuncture has also showed promise for me as well. As far as trying alternative therapies, I'm careful what I engage in. Unless it has actual clinical studies showing efficacy then I usually avoid them.
@wonderfulRainbow817
What little things make your life easier?
Grab bars in the shower, ramps into buildings instead of steps, curbs that slant, parking spaces close to the places I need to go to, and automatic doors instead of manual ones.
Day I
Hello, Every cups member calls me Day I want to take the challenge although I hope I can stay the course. I was born with Asthma so that's life-long; but now I also have COPD, Hypertension, Sleep Apnea, and a degenerative bone disease called A Vascular Necrosis, I had my first hip replaced at the age of 37, (20 years ago). I'm in severe pain and on an opiate now for 9 years straight. I have depression and anxiety plus PTSD from the war in Beirut, Lebanon. Ive had my Medical marijuana card for three years, I found 7cups just in time :-)
Blessings, everybody, Day
Day 1
Hi everyone! Some people on Cups call me gymnast, however, we are a system account so the posts may come from Zoe, Charli, Lynn, or Clarisse. Ryan does front on here however she does not know enough about our chronic illnesses yet to make statements about them.
We have Postural Orthostatic Tachycardia Syndrome (POTS), Hypermobile Ehlers-Danlos Syndrome (hEDS), and Degenerative Disc Disorder (DDD). The first of our diagnoses was received in February 2020 with the last one being received just in May 2022.
I hope everyone has an amazing day!
@SystemOfWolves, nice to meet you. I also have hEDS and POTS
Day 2:
These illnesses have impacted every aspect of my life. I have to eat 8 small meals a day, drink two gallons of water a day, maintain electrolyte levels, nap for an hour a day half way through the day, wear different shoes than others, walk at a slower pace than most, and not do a lot of things most people can do.
Day 3:
- A genetic test
- A tilt table test and QSART test
How have these illnesses affected your life?
Having to deal with medical issues that no one else has to deal with on a daily basis affects everything in my life. It colors how I view life. It's not necessarily a bad thing, it's just an honest evaluation of my life. I look at things through a prism most people don't have. And I adjust my actions according to what I see, think, and feel with my disabilities.
How did you get a diagnosis?
All of my diagnoses were through board certified physicians. I've had procedures, genetic testing, biochemical testing, and imaging done.
Day 4: My friends and family are pretty supportive of it now. At first my family didn't understand and said it was just stress when I was telling them something was physically wrong with me (which we later found out there was). They still put it to stress more often than they should but at least they are being more supportive
Day 5:
Alone, tired, but also very strong at the same time
@wonderfulRainbow817
How does being chronically ill make you feel?
It can be frightening at times. I need to keep tabs on my MTHFR as it can cause blood clots in my extremities. I've had my share of blood clots to last a lifetime. The fused right foot can make tired as I have to put more energy into making it work normally. And the spinal stenosis gives that feeling of pressure in my head that makes me want to remove my head from my body if I could. The one thing that does bother me are people who ask me what's wrong with my foot. I always ask them, "Why do you ask?" It can be daunting at times to integrate the various disabilities into a manageable situation.
Day 6: It won't be easy but it will make you stronger