Not much new

I have convinced my doc that I shouldn't have knee surgery for the time being. I'll be getting a knee brace & we'll see how I do with that. If that works ok-ish then I can hold off on the knee surgery consult. I do need a hand consult to see what/if anything ought to be done for them. I am going to ask my genetisit who said he'd refer me to anything I needed) to send me to the hand clinic at Mayo, between the osteoarthritis, the EDS, the Poland's & the neuropathy I am past what my GP wants/can deal with. I think it makes the most sense to see if the hand clinic will see me & try to deal with all the issues than get 1 doc to deal with each. I could have the neuro for neuropathy, a rhum for the OA, a othro for the PS & the GP & rhum for EDS, really that seems a bit much & a bit scattered.

I'm still doing the arthitis pool class at the gym & it's going well. I can't seem to go below 600-300-600 for the gabapentin

Update

I don't know where the hell my mine has been, but I think I really needed the blog break. I had been popping in from time to time to read other peoples blogs, but I needed to step back a bit I guess.

Anyhow, what's new with me? I'm got done w/PT for general joint crap & now may be heading back for my neck, stupid neck. I am trying to go to the water arthritis class at the gym, hope to do that 2x per week. I modify 90% of it, but the teacher is fine with that.

I got my orthotics & the one sucks so I doubt I'll be wearing them. 2 castings & 4 appts for 1 ok & 1 useless orthotic, lol.

My right knees pops a bit out all the time now so I am going next Friday to see on ortho for a consult to decided if surgery is needed. Dunno if I'd do surgery right now, but I'm up for seeing what ideas this doc might have.

I'm tapering down my Neurontin, I'm sick of the weight gain & I think that's a big knee pain/sublux issue. I was at 900-600-900 & got down to 600-600-600 & am switching to 600-300-600 this week. My goal is 300-300-300 or 300-0-600, something around that. I have gained 25lbs in 18 months & that's got to be killing my knees. My neuropathy is coming back up with these lower doses, but I think I'd rather have the neuropathy.

I'm not dieting, cause I suck at it, but I have cut soda out & am just trying to nibble snacks so much. Also trying to be sensible with what I eat. Like I still get take-away, but last night I got chicken sandwich instead of a burger or if we get drive-thru Toad & I will split a burger & each have our own small fry. Even if I don't loose much, that's ok so long as I stop gaining.

Colds

Ya know, it's funny, I don't get colds often & when I do they are gone pretty quick. Toad brought a cold home from school last week & it's been kicking my ass. I guess when you're already tired all the time & achy all over adding a cold to the mix really just makes you feel like a blob. I went to bed last night at 8.30. I can't take cold meds cause they cause my heart to race so fast it feels like it will explode, so I'm just stuck suffering thru it.

On a good note the drama with getting my pain pills cleared up & I finally have them. I don't think I mentioned that, but I'm not sure, so I'm sorry if I'm repeating a bunch. My doc rx'ed some extended release pain pills, he said some insurances won't cover them. I go to fill it & the pharm says that my insurance is canceled. I got some paperwork in a few days late & so my insurance was canceled on 30/9, but it should have been reinstated on 1/10. My insurance was, but the rx part wasn't for some reason. So I call, the chick there says it should be good, but she's gotta call the other part & get them to switch it. So they didn't get it fixed til the next day. I couldn't get to the pharm til just before 5, they re-run the rx & the med isn't covered. At this point I consider banging my head on the wall. The awesome chick at the pharm calls over to get the rx changed to another form of the drug. My doc isn't in, so she get transferred to the talk to a random doc line. They don't answer & she gets transferred to someone to leave a message, she tells them it's 5 to 5 & doesn't want to leave a message, she wants to talk to a doc since this is a Friday. The person on the other line says they will have the doc call back, that they will give him the message personally. I wait a bit & then tell the pharm I am going home, to call me when they figure out/hear back. She calls me later & tells me the random doc said if I was in pain, I should just go to the E/R & they could decide if I needed pain meds. (BTW to that doc, Thanks asshole. I think I know who that doc is too, there is one doc there who doesn't believe in giving pain meds.) I am now lining my head up with the wall to start banging, but the pharm chick says she decided to just call the E/R & see if the doc there would help. It was a doc I'd seen before when I hurt my foot. He was fine with writing for me thankfully. I told her it was too late for me to get them that day but I would pick them up the next day (Sat) & thanked her a lot. So tomorrow I'll call my doc & check that this matches up with what he was going for, which I'd think it would.

Hm, I guess this post was less about my cold & more about the pain meds. Well one more thing on the cold front, this is the first "big" cold Toad has had & while there is more whining than one person should have to listen to, she's been dealing very well with it. There is no pre-school tomorrow, which is kinda good cause she would have to miss it. I just hope she's ok by Wed for school, I'd feel bad if she missed a whole week. My roomie finally got the cold yesterday & she's out of sick time at work so this week is gonna be a hell week for her.

& the GP says

Remember the post I wrote about being disabled & wondering if I was? Well I now have the answer, I am.

I went to see my GP* yesterday to discuss the results of the trip to Mayo & to decide where we are going. The appt lasted 45min & we discussed tons. He did ask how I was feeling & how I'm handling this. I told him I've had a few down days, but right now I think I'm overall just fine & coping well. I was also referred out to podiatry for orthotics, cardiology for an echo & PT/OT for whatever they can do. I did have him check & see if my B12 was up to a nice happy level (it was low about a year ago & I've been on supplements since) & check my vit D, cause that's often low in EDS folks. He wants me to keep an appt down at Mayo for OT since they would have access to more gadgets & thingie-bobs to help me do stuff. He was certain that the one here wouldn't have as much as I would need. After a month I'll go see him again & see what's up with what from the appts.

We talked a lot about my ability to do things & my pain levels & how often I'm popping stuff out. I made the comment that while we couldn't fix me, I wanted to make sure we slowed down the damage as much as we could. I also talked about what I could do 5 years ago before I got pregnant the last time. I told him I thought I was on a razors edge before I got pregnant & that the relaxin was all I needed to push me over the edge. He did ask if I was done having children & I told him yes I was. Based on his body language while we talked he doesn't think I'm going to be much better than I am now, but he does think we can slow things down. I can tell he read the stuff I gave him last time & looked up more from how our conversation went. I gave him some more info & he said he'd read it, which I'm sure he will. I told him I think I have a structural issue & that's what my everyday headache is & he said it totally could be. He said on his own that just because a laying down MRI is fine doesn't mean there isn't a structural issue, even on normal people there are changes between laying down & standing up & on me there definitely would be.

Got a call from PT/OT for an appt to see what they can do for assistive odds & ends. She asked what sort of things I would be needing (cause I'm 99.99% sure she had no clue what EDS is) & I gave her a 1-2 line run down on my issues. She asked if I had a wheelchair already, I fibbed & said no since the one I have is a bulky travel chair that isn't quite the right size. I don't think my insurance would cover one since I wouldn't be full time, but hey never hurts to try. I go next week for that & based on what they have/do I'll figure out how soon I want/need to go to Mayo. They did offer an appt for tomorrow, but I can't get to that. She was a bit worried that an appt at the end of next week was a long way off, but I told her this is my everyday life. I have some coping skills/tricks & they would bide me thru for another week. I told her I have Poland's Syndrome too. I thought it was kinda nice that a medical place cared if I was gonna be ok.

*Ok, he's really an internist, but that's long to type & I hate the term PCP, so my doc gets a small demotion when I type about him. He's pretty laid back so I think he'd understand.

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.)

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.

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
EDS
PFPS-Really was EDS
Arthralgia-Due to EDS
Neuropathy
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
Asthma
Migraine w/Aura
OA of both hands
OA of both knees
Kidney Stones
Scolosis
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.

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.