Work
- Ehlers Danlos Syndrome with hypermobility is my main medical issue
Current City and Hometown
White Lake, MichiganCurrent city
Columbus, GeorgiaHometown
About Susan
- Update August 2014: I've learned a lot about Ehlers Danlos Syndrome since diagnosis. It needs awareness badly. I tweet a lot about it, trying to help raise awareness. it doesn't help that one of the main sites for EDS comes up as "hacked" in Google though I'm told it's been fixed. It's easiest just to Google Ehlers Danlos Syndrome. There are quite a few good sites about it and about Dysautonomia. I'm also willing to answer any questions so feel free to email, IM, phone etc to ask any. I'm open about EDS because I don't want anyone to suffer these symptoms without knowing what's going on. The pain alone is enough to drive anyone crazy. I met a lady yesterday who likely has EDS. She's been told a lot that she's a hypochondriac. I told her about EDS and POTS (Postural Orthostatic Tachycardia). She was going to look it up.
You can't SEE EDS for the most part. I say that because the swan neck deformity in my fingers is visible. My cane is visible, as is the walker I use sometimes. Other issues are only visible if you know what to look for (like the livedo reticularis all over my arms and legs). The intense pain is definitely not visible.
I'm hoping to get ring splints for at least my two worst fingers soon. I have to see the cardiologist this week. It's just a precaution to watch out for EDS related issues like mitral valve prolapse and aortic dilation. No signs of those so far and I hope there won't be. I need to see the gastro doc soon to keep an eye on my liver. I go back to the U of M allergy clinic in October. Physical Therapy just ended, again, for now. Things are rolling along. EDS is just something I have to live with. It's doable. I'm working on making my life more EDSable (making accommodations for EDS like needing to stay away from hot places, places that have lots of chemicals and perfumes, keeping the cane close, etc etc). All in all, I keep on trucking! Big hugs and love to all who need it.
Update January 2013:
Well, I went to U of M again this month. I have HEDS which is Ehlers Danlos Syndrome with Hypermobility. I likely inherited it from my father. There is currently no genetic test for this disease but they are working on it. I have an ophthalmology appt soon because I have "blue sclera" and am in "danger of retinal detachment". Oh fun. There is no cure but there are supportive therapies and devices (ring splints etc.) so that's what I'm working on now. I will make mango peach lemonade out of these lemons yet! A big hug to all who need one. I know I sure do.
Update October 2012:
Well I didn't get to go to U of M in September because E Coli tried to kill me so I went today. It's official. I am a Zebra, aka someone who has Ehlers Danlos Syndrome. For more info Google or look at www.ednf.org There is no fix for this but at least I will know how to better prevent problems when I can. I just wanted to KNOW. Going to go rest now. hugs and love to all who read this
Update September 2012:
I should go edit this whole section but I'm not going to do it today. However, I am going to add a health update. Remember that lemonade I was kind of tired of *points down the page* Well I have decided to make mango peach lemonade this time. I go to a clinic at the University of Michigan on the 25th. They're checking me for a genetic connective tissue disorder called Ehlers Danlos Syndrome. I know someone with it and would have said no way in heck I had it myself. I may be wrong. Apparently, being able to bend your thumb down to your wrist and turn your arms around backwards are not cool things to do. Oh it looks neat, but when you do that you are tearing things. So, being double jointed, aka hypermobile, is NOT a good thing. It could mean a person's body does not produce collagen correctly. In other words, I may have bad glue. My Elmer's may be watered down. There is not a lot of awareness for EDS. Many doctors do not even know much about it. There are sites like www.ednf.org that have more info about EDS. Spreading awareness of it is very important! wikipedia even has a page on it with a list of symptoms. I stumbled across the info and almost fell off my chair when I saw myself in the lists of symptoms. I am afraid of the eval appointment. I just hope U of M has experience with this insidious disorder that can cause so much pain. I also now know what the word subluxation means. I had never shown a doctor the weird way my joints bobble around because I had no idea it was abnormal. The many times my joints have slipped out and back into place are a key symptom of EDS. So, I may be a zebra but I am going to drink the peach mango lemonade and keep on trucking. thanks for listening.
I'm Eastern Cherokee and Choctaw. My husband Brian is Ojibwe and one of the most loyal, loving, honest and funny men I've ever met. Last October we celebrated our 27th anniversary. We live in Southeast Michigan with our two sons. I worked at a human services agency for 10 years in the Head Start program. I was a teacher then I became a family services/family involvement coordinator and loved it. But then life handed me health problems so I am now on disability. I have been diagnosed with severe allergies, allergic asthma, High blood pressure, Acid Reflux/GERD, Osteoarthritis (knees and spine), obstructive sleep apnea and peripheral neuropathy. The last one is nerve damage caused by a severe vitamin B deficiency. If you feel run down get your B levels checked! Added recently are diabetes, vitamin D deficiency and a thyroid condition.It's also a pretty good bet that I have Fibromyalgia but my Dr wanted to "eliminate a few more things" before he officially gave me that diagnosis. My liver and spleen are also enlarged. That may sound like a lot but I'm the eternal optimist so I make lemonade out of the lemons and keep on trucking.
Update as of June 2011: Yes I have fibromyalgia. I will need to see a rheumatologist soon. I will also need to see a gastroenterologist for the liver issue. I have enough lemons now please. How 'bout some strawberries now instead, or mangos. I like mangos.
January 2012 medical update: Soon I see a pulmonologist for lung and sleep issues. Liver enzymes are still not where they should be so back to the gastro doc I go,. The rheumatologist I see about every 3 to 4 weeks still. My main Dr comes to my house through a home visiting physicians program for people with severe health issues. Thank goodness for her. It turns out my thyroid disorder was undiscovered and untreated for so long that it may be what messed up so many of my body's systems. At least that's what one of the many docs I see now told me. I still have a lot of days where I can barely get out of bed but also thank goodness for Cymbalta and Gabapentin. They keep some of the pain in check. Also thank goodness for my two sons who put up with being called each others names or even called the dogs name, and put up with me when I can't think of what things are called. (Fibro fog is a real thing folks and a pain in the tuchus.)
I'm adding another update to this because there is something I didn't mention before. Depression is not easy to talk about or admit to having sometimes. The health issues I have can probably all lead to depression but some may be genetic. September marks the anniversary of my brother's passing in 2006. He was only 35, but depression got the best of him and he took his own life. David will always be missed but lives on in our hearts. I doubt many people read this stuff but if you do, suicide is NEVER the answer. Talk to somebody please. I know I for one will listen. I've also had a hysterectomy due to polycystic ovary problems. Also not easy to talk about but if you need the surgery please do it. I'm sure some of my depression issues were also related to this. If you read this, then thanks for listening and please take a big hug with you wherever you go. We all need one sometimes.
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