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.
Showing posts with label odd. Show all posts
Showing posts with label odd. Show all posts
25 September 2008
11 September 2008
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.
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.
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.
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.
Subscribe to:
Posts (Atom)
Posts
