29 September 2008

Things running thru my brain

Oh let’s see, how do I begin this. Around the beginning of this year I first heard of Ehlers-Danlos and began to consider a if I might have it. It seemed so farfetched to me, I had the pain I had problems but nothing that severe I thought. So I read more of a research more and asked questions, trying to learn more about this to prove to myself that I couldn’t have it and yet with each question I asked and with each thing I learned it seemed more and more likely that I did. When it finally became fairly obvious that that was what was wrong with me I had asked my neurologist if she concurred. She did. Then I went to Mayo was diagnosed. Thus began the attempt to transition my mindset from that of a person who was trying to figure out and fix what was wrong to one who now knew what was wrong and that it could be easily fixed.

It’s a strange thing trying to figure out what the normal is when what you thought was normal has nothing to do with what is normal. When I was young I thought it was really neat to be able to be so flexible to do the little tricks I could do with my hands. I always had pains but I thought everyone did, growing pains, headaches just plain aches. What kid doesn’t have those things? It turns out most kids don’t have them every day, I did. My sister and my mother had these things too, so in our house it really was normal. By the time I was in my teens I never even bother to mention these things. I’m no longer sought medical attention when I hurt myself by simply walking or just going about my day. I realized there was no point; an ace bandage and maybe a pain killer were all they had to offer. In my early twenties I learned that my tricks were good for a free drink. By my mid-twenties my pain went from I really could ignore, that I could push to the back of my mind if I needed, to something that often screamed, demanded my attention. This began the game of trying to find a doctor who would listen and value what I had to say. Finally I got to the doctors I have now and to the diagnosis I now have.

The hardest part for me is this transition, when do I get to the next stage, how do I move through this and except, because I don’t want to. I’m still me, just a version that is carrying an extra 20 pounds from meds and inability to be as active as I ought to be. I don’t want to sit here and accept that this is that, this is as good as it’s going to be, that I couldn’t get back to the level of activity and ability that I have five years ago. I don’t want to accept that I own a wheelchair, that the only way I can put all these feelings down is to use speech recognition software. (By the way if anything reads really strange chalk it up to the speech recognition crap rather than to me suddenly having horrific neurological conditions.)

Well I guess that’s enough of my ramblings for today.


Reality is merely an illusion, albeit a very persistent one.
-Albert Einstein
There are many ways to be free. One of them is to transcend reality by imagination, as I try to do.
-Anais Nin

Just because it's beautiful

28 September 2008

Pins & Needles Hand

So needless to say with my shoulder & elbow having been out my hand is all pins & needles. I just feel like whining, but I'll spare you all. The elbow is back where it belongs & the shoulder is just about right, but just a hair off or I pissed off something in there & that's what's hurting, either way it still hurts.

On to other topics, I am off the Pamelor, couldn't take the side effects anymore. The biggest issue one being my heart going flutter-flutter-BOOM, that feeling wigged me out a bit. The neuro wasn't in the office when I called to say I was going to stop taking it. When her asst called me back she said the neuro didn't have my chart to consult, but if I wanted to try Topamax she'd call it in for me, unless I had kidney stones, which she thought I might. I have had at least a dozen that have passed & have at least 1 in my left kidney right now, so I passed on taking that. So I'll stay on my Neurontin for now. I have been reducing the dose a bit even though I I feel my neuropathy more. I am sick of feeling so tired & the neuropathy I have isn't going to kill me. I need a break from the drug right now & I'm not going to stop taking it, but a reduced dose for a few weeks should be ok.

I go see my GP next week & talk over who/where he'll want to refer me out to & what I want to be referred out to. This is also the appt where I decide if he is a doc I will be keeping. He did blow off a lot of issues I was having thinking they would just go away or something & I was thinking of firing him, but he had been getting a bit better & does seem eager to learn. A doc who can admit he might not know everything under the sun & is willing to not only take literature I bring in, but actually read it is a rare doc. So we'll see how this appt goes, see how much of the EDS data I brought at the last appt he read & if he & I are on the same page.

Oh & on a wonderful note the potty training is going wonderfully!

27 September 2008


That would be the number of fairly bad subluxations I am sitting here with right now. See it all started with a simple idea. Toad & I needed to swap bedrooms. Turns out I can't move a twin bed by myself. I can't get it to reduce right, neither will go where it needs to. My hand is major pins-n-needles now & my joints just ache, that deep, deep ache nasty pain. If I work hard I can push the pain back enough that I don't have to cry, but this is bad. I'm gonna take one of my muscle relaxers before bed & hope somehow the reduction-fairy comes in the night.


25 September 2008

The most important post I may ever make

There are people you "meet" on the net, there are blogs you read, there are boards you belong to. Those people you learn a lot about, those people may be among your your dearest friends. Maybe once or twice in your life time you will find someone on the net that is a soulmate of sorts. Someone who become part of your every day thoughts. Someone who tops the list of people you would go see if you won the lottery. Someone you would count as family.

There is a woman like that & her name is Elizabeth. If you know her you know what an amazing woman she is & her struggles. If you don't then go read her blog Screw Bronze! & find out who she is. She has some hellish medical crap going on & she needs some help. She didn't decide to ask the world for a handout, many of us asked, nagged & pleaded with her to allow us to help. Her wife set up a PayPal account & blog for people to be able to donate & I ask you with all of my heart to please help her out, if ya got a spare buck please donate it. What I'd love is if you read her blog & it touches your heart to donate & then post in your blog about her. There are a ton of us sick bloggers, if we each chipped in a buck or two (& I know for most of us $ is super tight), it will make the difference.

Being a EDS Mom

There are things as a mom that are different for me than for those who don't have EDS. That's not to say the emotions I have aren't the same or similar to those who have other genetic issues.

I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.

My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.

I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.

Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.

22 September 2008

The Sahara Lives in my Mouth

So the doc said I might have a bit of dry mouth with the Pamelor, but wow this is insane. It's as though I have a bunch of those suckers the dentist puts in your mouth in there it's so dry. I am moving it from a pm med to an am med since it really doesn't make me tired in the least. I'm not sure if it's making me hyper or if it's the lower amt of Neurontin that is doing it. Either way I am enjoying being awake, not groggy.

The bad news is that I don't think it's going to work well for the neuropathy cause that is coming back. I am so itchy, which I used to be before Neurontin, & the pins & needles are coming back too. The itchy is only on my lower legs & arms, plus the top of my chest, which is where it was before so I know it's not an allergic reaction. It might just be that the Pamelor just hasn't built up in my system. Oh & the eating is just ridiculous. I might gain 40lbs in the next week from how I am eating & you just can't help it. So far there is no effect on the headaches either, but it's only been 12 days & only 10mg.

So I'm stilling giving it a go, but I'm not sure how well it's working or going to work.

On a happy note Toad started using the potty! (If you don't have a child you may not get how wonderful this is, but imagine you had to handle items soaked in urine & feces 6-18x per day for 3 years & then you'll know why this is such joy.)

15 September 2008

It seemed like a good idea at the time

So I decided instead of walking down to pre-school, then back home, then back down to get Toad & finally back home that I would just take my laptop with me & stay downtown. I really forgot to factor in the fact that I have to walk 1 of the 2 speeds I can walk or walking is very painful & my odds of falling are higher, but my child doesn't like to walk either of those speeds. Add to that the weight of the laptop pulling on my neck & I guess I should be happy I didn't fall. I am in agony & sitting in the coffee shop I just to work in. I am now trying to decide if I would do better staying here & walking home carrying this thing or if I'd do better resting for a tiny bit, walking home with the laptop, then going back down to pick up Toad & walking back. On Wednesday I'll just bring a paperback with & read.

On a slighty brighter note I have a school girl crush on the cute guy at the Y. I know cause I wore mascara to take Toad to pre-school, lol. I think I'll take this second to say that I am a single mom, not sure if I've mentioned this before, but I may have. Toad's biological father is not in the picture at all other than to send a few $ most months & we only dated for a few months. I just don't have the energy to deal with a relationship right now, I'm just trying to get thru life one day at a time. But just because I don't want a relationship doesn't mean I can't feel cute & flirt with someone, so I am flirting with the cute guy at the Y, cause it's fun.

On a very cool note I got a wheelchair for free this weekend! We went to run a few errands this weekend & stopped by Roomie's Dad's house. (Ok, this may get confusing.) Over the summer Roomie's sister, dad, mom & step-father have a ton of yardsales & most things get stored at Roomie's dad'd house. The step-father works as a trucker & is known as the guy who "dumpster dives", most of the time it's just stuff set out at the curb along his route or things people will ask him if he wants before they would throw out rather than climbing in dumpsters. So anyhow we stopped by & in the garage with the leftover yardsale stuff was a wheelchair, so I announced I was taking it. It's the first chair on this page. It's not new nor is it s perfect fit, but it's darn close & it's free. The armrests come off which I have to have or I can't comfortably reach the wheels to push myself, the legrests come off too which is nice since I often leg propel myself.

Oh & because I haven't change the topic enough times let's do it once more! I am switching meds from Neurontin to Pamelor & it's been interesting so far. I was on 600mg in the am & afternoon & 900mg in the evening for the Neurontin. I am now at 600mg 3x per day. As for the Pamelor I am at the 10mg 1x per day at night. I am finding I remember my dreams more, feel a bit less drowsy in the day, those are the good effects. The bad ones are I've become a total flamiong bitch (which I do hope will mellow back to normal bitchy) & the leg itchies have come back in force. I have scabs all over my legs from itching, ugh. It's like RLS except instead of needing to move I get itchy. So hopefully as I ramp up on the Pamelor it will go away again. I do like feeling more alert & dreaming again, but not if it means I have to be an obnoxious bitch who keeps itching her legs til they bleed. (btw: Neurontin=gabapentin & Pamelor=nortriptyline)

13 September 2008

Assistive Walking Devices Epiphany & More Thoughts on Headaches

I just realized that I will probably not be able to use a walker or forearm crutches & I think I know why I have trouble with canes. They are transfer weight from the lower body to the upper body, correct? Where would that weight be redistributed to? Yes to the arms & from the arms where does it go? The back, the shoulder, the pecs & to the side. On the right side I am missing all the muscles on the front & side of my ribcage, which means the weight all ends up on my back & neck which isn't really helpful. Plus, add in that my arms are about 3" different in length & you can see that these devices aren't really an option for me. I don't know where I assumed the weight was going to, but it just didn't dawn on me that you need chest & side muscles to use these & that having arms the same length might be useful for pushing a walker. So I have decided I am going to start saving for a chair for times when walking unassisted isn't an option. It'd be nice if insurance would cover it since I'm pretty sure that my doc would write for it once I point out I can't use anything else, but since I don't need it 100% of the time I know they won't.

Ok so I've been thinking more about the non-stop headache I get. OSM suggested it might be related to Chiari, but I don't think it is. I really don't feel that I have Chiari, but I do think I have a structural issue. I think the issue is more likely to be related to the small bones shifting under the weight of my skull. I remember reading on another blog about a doctor at The Chiari Institute checking for that by having her person sit & the doctor used their hand to "lift" the weight of the head & I tried that with my roommate & my headache was cut by more than 1/2 & we didn't know exactly what we were doing. I do agree that there probably are migraines, but they are a symptom not the problem. I know a regular headache can trigger a migraine & I think the structural issue causes the constant headache & that in turn causes the migraine.

Is it wrong that I wish I didn't have to be my own doctor, that I want someone else to figure all this out rather than me trying to do it?

Oh & just for fun my right knee is jacked. I don't know if it's partially out or if it was & is now back but a tendon/ligament is still pissed about it, but it's driving me insane. I've tried a few things to get it "right" again, but it done't seem to want to be a normal knee. It's been wonky for a few days now & it does hurt, but it's like low level pain or wicked bad discomfort so I've just been dealing with it, but I am tired of this & want my normal level of crap knee back.

11 September 2008

Starting Pre-School

Ok so now for something more cheerful, Toad's 1st week of pre-school.

There had been an Open House last week so she knew about school & was really excited. We walked to school (since I don't drive & it's only a few blocks away) & she was just about jogging the whole way. The pic here is from when we were in front of the school & I asked her to stop so we could do a pic, she opted to run to the door. When I opened the door she ran in & said "Mrs. N, Mrs. B, I'm here!" After about 5 minutes I left. When it was time to pick her up Mrs N said no one cried or got hurt & in the 3 yr old room that's a big deal. She told me about her day & said she loved it.

Wednesday went just as well. When I was leaving she told me "Bye-bye Mama, I see you tomorrow!"

When it was time for pick-up I was about 20 minutes early & the kids weren't in the class, so I wasn't sure if they were on a walk or in the kids gym (her pre-school is in a YMCA) so I asked the cute guy at the desk where they were so I could make sure I wasn't along the path they would come back & he said to go sit in the pool observation area. I hung out over there & watched some lady getting pool PT which was pretty cool. Then when it was 5 to 11 I headed over to the waiting area & all the seats were taken so I sat on the floor cause I couldn't stand. When it was time to go in the class & get the kids I had to get up off the floor which is an interesting ordeal which involves me contorting a bit & rocking back & forth a few times & then tossing myself up. I can't use my arms or the elbows go out. Of course the cute guy from the desk was there when I did it, but he thought it was a pretty nifty technique. Amelia was a bit cranky it was the end of the day, but all in all she loves it.

Important Request

If anyone knows what a normal damn body is supposed to feel like could they please let me know? Thanks.

So yesterday I went the neuro to talk about the other not migraine headaches I get. I get a lot of types of headaches. For migraines I get aura-then-migraine migraines plus I also get just-the-aura-then-a-slight-pressure migraines (those don't hurt). For my not migraines I get the daily never goes away at the base of my skull headache that always hurts just the levels vary. Sometimes (3-12x times a month) I get a worse headache at the back/base of my head. It lasts for 2-3 days each time (every now & again it will last for a 5 or so days). It comes often when the weather changes or if I've slept poorly or if the universe has just decided I look cute when I'm in agony. These headaches are ones I can sort of function with. I have lived with daily pain for my whole life so I am very good as pushing on when in pain. I usually wear tinted glasses, keep my fluids up & can run an errand or stuff like that, but I am very slow while I do it & have to lay on the floor a lot. Seems my neuro thinks these are migraines as well. Her thought is if it hurts like a bitch, makes your tummy feel like hell & like is a bit like a dagger thru your brain that you have a migraine. I thought if it didn't feel like my other migraines that it wasn't a migraine, guess that's not true. So now I have a dx of 3 types of migraine, lovely.

So just for the record let's look at what I've been dx'ed with this year alone that I thought were normal medical stuff I thought the whole world had to deal with but turns out a freaky things most of the world will never deal with, shall we? Good, here's the list:
2 new types of Migraine
PFPS-Really was EDS
Arthralgia-Due to EDS
Not to mention the falls I've had to be treated for

Plus before this past year I have a few things wrong as well. Let's take a look at that list now.
Poland's Syndrome
Migraine w/Aura
OA of both hands
OA of both knees
Kidney Stones
Chronic Severe Constipation
MVP w/Murmur
Irregular Heartbeat

So yeah if anyone knows what a normal body feels like please do let me know so I can figure out if I have 80 other things wrong that I thought were totally normal. Ugh.

Ok, so I feel a touch better now that I got all that bitching done, lol. Anyhow since I guess it turns out I am still getting migraines at least once a week my migraines aren't under control. My neuro wants to switch me from the Neurontin to Nortriptyline. So this week I was already trying to wean down to 600mg 3x per day on the Neurontin since I wanted to see if I could reduce the side effects, but not have the symptoms return. So now that it was 3 days already at the 600 3xs I have added in the Nortriptyline last night at 10mg. I will do 10mg at night for a week then I will take 20mg at night for a week, then 30mg at night from then on. I am to try to wean down the neurontin slowly & see if I can get off it without symptoms returning, if I can't that's ok. 300mg 3x per day would be ok & 600 3x per day would be acceptable. She also wrote me an rx for Vicodin & I got the drug lecture. I told her than if I take 1/2 a Vicodin with a low dose muscle relaxer I can sleep & usually wake with a much less painful headache if not returned to my normal low level pain. So if she could write for that she could give me less of the Vicodin. She did give me the muscle relaxer & the Vicodin as well. It's just a few of each, but when I can't sleep at night from the pain it's nice to know I have something I can do other than cry. When I get sent over to PT she wants them to do some work with my neck. I do wonder if there isn't a structural issue due to the ribcage issues & the missing muscles. I wonder if I am using shoulder muscles for things they “shouldn’t” be used for & there for pissing off my neck muscles. Oh & just for fun I have a history of mild mania & am on a tricyclic antidepressant (Nortriptyline), so life could get very interesting.

I’ll be posting about Toad’s school & how it went this week later today.

07 September 2008

and now time for something completely different

Tea, yes we'll be talking about tea for a bit. I used to work in a coffee shop & people would always say how I must drink tons of the stuff & love getting coffee freebies, but really I'm just a Tea Girl thru & thru. I have a cup of tea everyday, until I find the perfect decaf for afternoons. I have either Irish Breakfast or Orange Blossom White Tea for my morning tea. I even keep a small tin of a few tea bags in my purse incase we go somewhere & I need a cup of tea. I have never been a big fan of green teas, every now & again I'll get the urge for a nice dragonwell, but for the most part I'm not big on greens. So anyhow, there you go a bit about me not related to my health.

06 September 2008

Digesting Ehlers-Danlos

So I've just spent the last few days just digesting the info that I do have H-EDS. It kind of funny to me that I need to digest it. I was pretty sure before the appt & was fine thru the appt, but I guess it took a few days to really sink in. I know it doesn't mean I'm any more messed up than I already was, but it does mean I'm not going to be getting better. I spent a bit of yesterday crying, not a sobbing mess, but just letting out a few tears.

I think one of the hardest parts of all this is my sister. She died about 2 years ago. Right now I could really use her & this is the first time since she died that I need my sister. There were plenty of times I wanted her & missed her, but this is the first time I've really needed her. We could be going thru this together, but instead I'm alone. She had EDS, but of course we didn't know. She was in horrible pain for so very many years. No one took her seriously. My mother thought it was depression (which my sister had as well). My father thought she might be a drug addict, why else would she be so desperate for pain meds. I though she had pain, but I also thought she had stress & depression which made the pain worse & I thought she liked the attention of being sick. I guess in retrospect we were all a bit off the mark. Her docs thought she had pain, but really it couldn't be that bad. They gave her Percocets & she took Tylenol on top of that. She was very under medicated & due to the acetaminophen she was piling in she killed her liver, then aspirated her own vomit & died. In my opinion EDS killed her. If anyone had noticed, or realized this sooner maybe she'd be here, but she's not & I can't put words on how much I miss her right now.

05 September 2008

Naps for the Slacker Queen

I think I need to think about taking a short nap in the afternoon. I know that makes me sound super slacker, but I am already tired all the time so it's not like I could get less productive & maybe I would have some energy in the late afternoon/early evening. I need to be able to get things done & right now I'm too tired. I think I also need to get a better rhythm on my day as well. Perhaps having a set daily routine will help me slog thru getting things done. I kept slacking because I thought I would get better, as that's not going to happen I think I need to come up with some coping techniques for the right now. (Yes, I do know I may be able to get better than I am right now, but I also know that I will always have some days like this or worse & need to be able to function on some level during those phases.) So I think starting next week I'll do a nap in the afternoon when Toad is napping. I can get some chores done while she's at school (or on the days she's not at school we'll do an hour of TV). Maybe that will help.

04 September 2008

It is Ehlers-Danlos

Ok, so how did the appt go? Well I am the type who shows up early for anything & my letter said to be there at noon so I was there at 11.30, when I get there they tell me I didn't need to be there til 12.30. So I went down to the subway (it's not a real subway, it's just a little underground mall) & got a bagel & juice since I had forgotten to eat before I left. I got a good spot to sit & eat & read my book. I checked out the medical supply store there & felt like a kid in a candy store, even though it wasn't very big the plethora of wondrous things was astounding. Then I headed back up & checked back in & grabbed a seat.

Then I waited, waited, waited & waited. Finally my name was called. The woman who I saw the the geneticist's PA or something, I didn't ask her title. She did the family tree & did my height & weight & asked a bunch of questions. I didn't know the age of my grandparents when they died, but was able to make guesses that turned out to be within a few years of right so that was good. (Handy tip find out how old people are or were when they died before you go.) I gave her the family symptom sheet I had made at home. Then I went back to the waiting room where I prepared to grow old & die. At about a half hr later I got called back to meet with the geneticist.

I really had some butterflies going at that point & went back. We met in his office & the second I shook his hand I felt much calmer. His pic on the Mayo site made him look a bit formal, but he in person has a welcoming face & a friendly manor. I told him that I have Poland's & said I didn't know if the disparity between my sides would effect any testing & that side-by-side comparison of any joints would not be able to be done. I asked if he could tell me really quick if there were any updates on Poland’s & no they still hadn’t figured that out. He disagrees with the clot theory & thinks there is a genetic component. The first question from him was why I was there now. What did I want from this appt. I told him was there now because I went without insurance for most of my adult life & had insurance now. I told him I was running in to problems with pain & with my joints dislocating more often. I told him I wanted to rule out V-EDS & Marfan's & if we could rule in or out EDS & if in, then what type. I told him I have 3 children & I want to know for them. Seemed that those were good answers & we moved on. He asked about my joints & I showed him a few hand tricks & he said that I wouldn't need to change in to a gown unless I would prefer that. He said he would be able to tell me if I had EDS & should be able to type it. I kinda grossed him out with pulling my finger til the joint at the base separates (that, it turns out is a full dislocation). He asked if I was working & I told him I couldn't. He asked a ton of things about me & the rest of the family & ask if there were more family in the area, but there aren't. He checked my upper chest & skin stretch, plus my joints & how I move when I walk & my scoliosis. We talked about how my symptoms affect me & my life. He explained about the types of EDS & then told me that I do have EDS. I have H-EDS, or by it’s older name EDS III. We talked a bit about that & I asked if the collagen was defective, lacking or both. He said right now they don’t know for sure. He said his thinking about H-EDS is that it may be 2, 3 or more types of EDS being grouped as one. That for some families it may be a lack of collagen or for other families it’s another set of genes & they have defective collagen. I did ask if there was any other connective tissue disorder it could be or anything else it could be. He said no, I have EDS, he said it could be possible that my family is C-EDS, but with only me to examine he felt my symptoms only fit H-EDS.

I then asked about how old my daughter would need to be to be seen. He said some docs who aren’t as experienced my say there is an age children must be, but he feels confident /comfortable seeing kids of any age. I said I would want her seen before she was school age so I along with her pediatrician can formulate anything we need to do for school. He does not treat patients, so I won’t see him again until my daughter goes or if my mom ever moves out here & needs to be dx’ed.

I am kind of still wrapping my head around this, I know I knew going in that this would be the outcome, but that doesn’t make it easy to accept.

02 September 2008


It's the "big" day. I go to the geneticist. I've been spending the day making sure all my paperwork is filled out & making sure I have all my notes from when my mom & I did a EDS related family history. I still have to make a list of questions I have & note a few "odd" things, like all the male babies in out family don't grow for 6-12 months starting around 6-9 months old. No clue what that's about, but every single male, even out to 2nd degree cousins & this is 3 generations of data. Will be interesting to find out if that is anything. So I'll be working on my question list for the appt for the rest of the day. If anyone has any questions they can think of let me know!