Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: September 2008

More and more companies are making their facilities handicap accessable, and I am ever so grateful as I am losing more and more of my ability to ambulate without aids.  Then, I came across this article from ButYouDontLookSick.com and was all “yay” when I saw the interesting ways companies are making their facilities handicap/disability accessible.  However, there are still some places that seem to have gotten distracted in the middle of converting there accessability to include the disabled. As is the case with one building in particular in my city.


I had an appointment and managed to park close to the building as I do not yet have my disability parking permit.  I get out of the car, hobble to the other side to pull out The Rollator (aka rolling walker) and start making my way towards the ramp.  Whoot! A Ramp! Said ramp was slippery from the previous rain shower and I did some sort of shuffle-scoot (which I am sure provided entertainment to anyone within 50 feet) to prevent myself from slipping, even though it did not prevent my ankle from twisting.  But hey, no worries, at least this place is handicap accessible!!!  The lack of elevator, though, somewhat had me stymied.  How am I going to get to my appointment located on the bottom floor?  My options seem to be a.) try to manage down the stairs with my 12lb walker with 8in wheels b.) scoot down on my bottom or C.) go back home and cancel the meeting.  So from the outside, sure, its handicap accessible.  On the inside, on the other hand, I guess I need to come up with some sort of “macguivered” dumbwaiter system.”


Anyway, while I am grateful for those building that have become accessible to ALL of the public, there are still some that need some work.
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For some of you, you know that I’ve been suffering with an Eating Disorder for many years.  For others, well, now you know.  It’s been a very long, agonizing, lonely road.  Now that I am “out” about it, things are better.  Don’t get me wrong, recovery is HARD work.  I’ve been in intense recovery for over a year and still working hard on it.  I still have difficulties.  I still struggle.  The difference now is I have support.  Support from my Doctors, Therapist, and Nutritionist, also the support of my Family, Friends, and Partner.  Without these people, I probably wouldn’t be doing as well as I am.  In fact, I know I wouldn’t be.  

So, why am I mentioning all of this?  
Well, for a few reasons.  It’s important for me to be as honest as I can, for myself.  No reason in keeping anything anymore.  Also, there are so many people out there who feel alone in their disorder.  Women, Men, Teens, even Adults as old as 60 and Children as young as 5 have been known to develop eating disorders.
I also want to shed some light of the subject.  Share some of the Misconceptions people may have about eating disorders.  The best way I can think of, is share one of my favorite Youtube Vloggers, Kat.  Kat has been making this series of videos for over a year now.  She has been published in magazines, and has been on TV.  She developed a support group online (Life After E.D.) for other sufferers, and loved ones of sufferers.  Please check out more of her videos as well as her website. 

I’ve been having some awful nerve crap going on, where my body will literally BURN. Everything hurts lately, the fatigue is debilitating, and I havent been able to do any of my PT exercises because I end up pulling something out. Most of PT is spent relocating, trying to work out spasms, etc. My PT is determined to help me though. I swear she has been the most helpful person in this whole mess.  However, today when she was working on my ankle told me that one of the major tendons is swollen and inflammed. Great. Now I have that to deal with. She used this laser treatment that uses infra-red technology to promote healing at the cellular level. I thought, wow, neato, very star-trek. (Yeah, I’m a dork…). Then came the ice… yeeeeoooow, is all I have to say. My whole leg started to hurt, but she wanted to get some of the swelling down. She just took a small ice cube and massaged the tendon for about a minute and a half. It hurt, though.


I just went thru a Pain Management Clinic fiasco.. in BOSTON no less. The first guy, pretty good.. the second guy, did a psych eval for opioid treatment, I passed with flying colors. Sweet. This last guy, the physiatrist, JACKASS. Didn’t examine me, scolded me for not wearing knee braces (if anything my knees are my best joints… ), then told me I needed to “get more exercise and sun” so that my “fibromyalgia” will improve and wouldn’t let me get a word in. I wanted to kick him in the teeth. Didn’t look like he even read my chart, then wanted to put me on Cymbalta, gave me Voltaren Gel which burns, then told me to go to this Pain Clinic an hour and a half from where I live. WTF? I can barely drive 15min let alone an hour and a half. Sigh. I was so upset. So, the next day I got a name of a Dr in my area that is affiliated with the Ehlers-Danlos Foundation and have an appt on Oct 6th. He’s an orthopedist, hopefully he can help. I need someone to oversee my treatment that knows something about EDS. Sigh.

Some good news, I was speaking with my therapist and told her how I felt about the wheelchair. After some thinking and talking, she stopped, then said: “I never really thought of a wheelchair improving mobility.” After I told her how I felt, that it would allow me to be able to do more. It would allow me to not have to worry about how far I will need to walk, or about fatigue, etc. She agreed. Having a wheelchair is not excepting defeat. It’s not giving up. I won’t be using it all the time, just when there is a lot of walking required, or for a really bad day. It will enable me to get out more, enjoy being out, and not worrying about a dislocation, what will I do if I get too fatigued. For some a wheelchair can mean freedom.

ok, so it wasn’t really that exciting, just painful.  Turns out my ilium (hip bone) on my left side was rotated backwards and dislocated from my fall.  Fun times.  My PT did a lot of work on it and sort of got it back, it didn’t last though.  All week I’ve been in a lot of pain.  My elbows are giving me more and more problems… and, of course, the fatigue.  The horribly debilitating fatigue.

I went back to the pain clinic to talk to the Pain Psychologist who did the risk assessment for opioid treatment.  He said I wasn’t at risk at all.  Duh!  …and from my questionaires I averaged a 7/10 on the pain scale on an average day.  Wow.  I considered my average to be about a 4-5/10 on an average good day.  I guess I underestimate my pain.  The Pain Psych told me that he feels I have too many drs, to which I agree, and to fire some.   Especially my rheumatologist who is ignorant and a jackass and believes that I do not have EDS based on the fact that my skin isn’t very stretchy and that I haven’t had the skin biopsy to prove it.  Well, the GENETICIST says so… so there!  Anyway, he told me to fire the rheumy, of which I will do because all he does is stress me out and make me angry.  The next thing was a referral to the Physiatrist in the practice.  He feels that all my drs aren’t looking the big picture, the whole body, only looking and treating different parts and symptoms.  EDS is a multi-faceted condition and needs to be treated as a whole.  So, of to the Physiatrist on the 15th.  I talked to the Pain Psych what he felt about using a wheelchair for really bad days.  His concern was me losing strength.  I explained to him that I am very commited to PT and willing to try anything, but that there are some days that are extremely painful.  Other days where there are group activities that I pass on because it’s too much walking, or too long of a day.  Having access to a wheelchair would mean a better quality of life.  I wouldn’t have to worry about how long we were out, how much walking there is to do, what happens if I get too fatigued.  I could actually enjoy being out, rather than miserable and thus, making my friends uncomfortable.  It’s not the answer to everything but I believe it will broaden up some options for me.  The Pain Psych really considered this and though it made sense, but to talk to the physiatrist about it.  So that’s what I’m going to do.  For now, I have a Rollator (Rolling Walker) that has turned out to be SO much better than the forearm crutches.  Less pressure on my upper limbs, and a much smoother walk… no jolting from the crutches hitting the ground.  All I have to do now is find the most comfortable height for me.  So, that’s about it for now…  I will have more to post soon.  

I bruised my tailbone… yes, I rock. It’s a rather dumb way though… I was crouching over my bag (a position that I should know better than to attempt) trying to find my keys. I lost balance and fell backwards, yep… you got it, right on my tailbone. Apparently the jolt from hitting the concrete was enough to make my pelvis shift in every which way. So now I lay here with pillows under my knees in attempt to take the pressure of my tailbone and pelvis. Oh, and did I mention that I am out of pain meds. Yep. That sucks. I took some tylenol thinking that maybe, just maybe, it will have some sort of affect. Yea, no, total wishful thinking there.

On the other hand, the weekend was pretty good. Yesterday I actually had a very good day, not in a lot of pain and wasn’t completely fatigued (even though I paid for it today). My friend came down and we went for some Frozen Mudslides and some amazing appetizers at Joe’s Bar and Grille. Then we went to the bookstore where I spent money I shouldn’t have spent… hey, it’s books. A good investment. From there we went for latte’s and split a cookie. It really was a fantastic way to spend an afternoon.

On the way home, however, my friend’s car got a flat. Not just a typical flat. No, the inside of the tire was SHREDDED. WTF, yo? I know how to change a flat tire, however, given my current state of physical incapacity, me changing the tire is not an option. I ask alison to look in her trunk for a jack and a lug wrench. I am answered by “*raises eyebrow*.” We both go into the trunk and pull out: 2 boxes of random kitchenware, a coffee maker that’s missing the pot, a flamingo missing his feet, a baby doll, some sunglasses, laundry detergent, and… a GIANT PIGGY BANK. Of which I decided to compensate. More on that later. Anyway, we eventually find the jack and lug wrench after emptying the trunk of the aforementioned items. The jack/lugwrench contraption is noteably… crap. After trying to figure out said crap contraption some awesome dudes wearing Obama tshirts stopped to help us. They took a look at the crap contraption and went to their car to get the proper instruments and changed the tire in no time. Thank awesome dudes wearing Obama tshirts. Good people willing to help stranded females in a not so nice part of town do exist! Yay!

We get back to the house and my friend decided to stay over, she didn’t want to drive the hour it would take her to get home on a donut. I don’t blame her. So we make some version of a white russian that totally needed more soy milk. They rocked. My friend told me about how Mr. Big Ass Pig no longer was able to stay with her and was doomed to a yard sale. I protested saying that I would take custody of the pig…. and decided to repaint him. Oh yes. He is now totally RAD! Pictures will be taken once he is completely finished.

In conclusion, yesterday was a really good day despite the flat tire. This morning was relatively good too. Choc Chip pancakes for breakfist. Totally Win. Falling while trying to get keys out. Fail.

Tomorrow is the 3rd appt at the pain clinic (I thought it was going to be 2 at the most…) Hopefully they have figured out some sort of treatment plan for me.