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26 October 2010 @ 10:41 pm

First off, just going to say that I have not heard anything back about my wrist.  I called my rheumy on monday and they told me to call back on wednesday.  I was going to ask to get them to rush it but really would it make that much of difference?  I have already had this issue for over a month, what will a few more days hurt.  I didnt mention that after the xrays and stuff  we went over and I ordered a new brace for my wrist.  They called on monday and it is in so going to have to go in and get it t omorrow or thursday (depending on mom's schedule as I can't really drive right now).

Oh speaking of wrists, had an interesting predicament this weekend.  I had my left hand all wrapped up in my immobolizer and had been taking my pain killers pretty regularly (long trip, stress etc makes my pain worse).  We were all (all 4 generations of the family, only my dad not there) and all of a sudden there was this load *clunk* my mom turned to me, saw that my left wrist was still wrapped up and just goes "You have got to be kidding me".  Nope, my right wrist had just dislocated and my thumb was going to go soon too.  Try eating pizza with your left wrist in an immobolizer, your right wrist all wrapped up in an ace bandage and your thumb covered with bandaids (mimicing a splint).  My mom had a pretty good laugh though at how pathetic I looked and I think it showed to the rest of the family just how easy and often these things occur.  Thankfully it has already 'cleaned up' and I am having no issues with it. The thumb is still slightly problematic but no different than a normal thumb dislocation.

So as to the title of the post.  I am now the proud owner of a 9inch, plastic support bar in my bathroom.  It is right beside my shower so that I can grab it to use as support when I am getting out of the shower as that had started to be an issue.  With the POTS and autonomic issues I get really lightheaded in the shower so have to be careful.  This is my first visible adaptive permanent device.  I need to really get a shower chair but it's so big and visible that I have yet to start down that road.  Maybe now that the first one is out of the way, subsequent help might be easier to adapt too.


21 October 2010 @ 10:09 pm
Okay, so I dislocated my left wrist about a month ago.  No big deal right?  I mean it goes out all the time with no real issues.  Well, this time I think there are issues.  I have had it splinted this last week or so but still it's in a lot of pain, swelling and just 'wrong'.  I gathered up the courage to go into my Rheumy's office yesterday to ask if I could get it looked at.  Apparently it was his busy day (it was the monthly meeting for all his patients on 'dangerous' medications to check in with him).  Thankfully someone had just cancelled an appointment so they just happened to have an opening for today.  We also headed over to the place that I get most of my braces from and they switched from the Corflex one that I already had to another brand that just fit horribly!  I could have put 3 fingers between my wrist and the bend in the brace for the wrist, and 1 or 2 in the thumb bend.  The lady working there was shocked as she had never seen it fit THAT bad before on anyone and we decided that no amount of bending done to it would make it fit well enough.  She mentioned that she could order the one that I already had.  We tried a few other stores but couldnt find the one I wanted.

So today, I was having a bath to get ready for my appointment and noticed that the water was nice and warm, except for an area about the size of a toonie on my left wrist felt really cold.  Got dressed and we headed into town for the appointment.  I thanked M for fitting me in and again said that it just didnt feel right and she told me that yes, I definitly needed to get it looked at.  Went in and saw Dr. W. I took the brace off, told him I dislocated it, went over again a breif history (dislocations happening very frequently, carpel tunnel, etc) then he wanted to look at it.  He did a few small and gentle tests of it, pressing in areas, confirming where the pain was.  At one point he did a move that hurt and I guess he saw it on my face (I usually dont show pain at all, keep it internalized but when I do show pain it means I am in PAIN) and very quickly stopped and said he didnt want to play with it anymore.  He asked how many times in my life I had it xrayed and I told him probably only one or two times, the last time would have been 5 or so years ago before I had an MRI.  He mentioned that MRI's of wrists never show anything and wanted to know who ordered it.  He then told us that yes it was significantly swollen (I dont swell), he could see a loss of ROM (which isnt really a bad thing lol) and then wanted to feel my other hand and noted that my left wrist, on the inside, felt a lot warmer than the other side.  He told me that yes I definitly made the right move in coming in and that xrays were more than warrented in this case (and maybe should have been done sooner than a month later - oops!).  He wrote up the req form and wrote a full little letter on it.  Said something like xray left wrist post-dislocation, hypermobile and EDS, and to check for a fracture or any other abnormalities.  I asked what about results and I was under the impression that the xray people would be letting me know.  I thinked him again and we were on our way.

Next stop was the hospital for xrays.  Went in, didnt have to wait long before I was called back.  They asked what I was doing to dislocate it (like I can remember the cause of all my dislocations) and if I thought it was still dislocated or if it was back in (I think it is back in) and a breif explanation of EDS and I threw in about the low bone density as well.  She did three different views and told me I was good to go.  I asked her when I would find out the results and she tells me that someone would have to read it but the refering doctor should get the report in 4 to 5 business days!!  Oh and if it was urgent the refering doctor could call in to get it read stat.  Mom and I were not happy with leaving after so little.  We avoided the ER as it's one of my fears having to go in and have the ER doctors messing around with whatever joint I was having issues with.  And we didnt want to take up time in the ER for a non-emergent issue.  However, if we had of gone through the ER, we would know whether or not my wrist is actually fractured or not :S

Well, in 4 - 5 business days I will update as to what is going on with my wrist >:-(
14 October 2010 @ 11:30 pm

... I could really couldnt care less about people who end up with serious diseases because of their own stupidity.  I have two family members who are like this and a third who can be kind of considered in this category as well.  This person first.

1) This is a person who has gone through health problems, has very legitimate health problems that have been 'fixed' but because of age, the issues of pain are coming back.  They did see a surgeon and physiotherapist that have both said that at the age they are at nothing drastic could be done.  Due to past issues (dependancy issues 30+ years ago) they will not touch a pain killer no matter how much pain they are in.  Okay, I get this, being in chronic pain constantly I can understand not wanting to really give in to that.  However I have learned limits.  This person will do a full twelve hour, heavily physical type of job at home and then become so grumpy that everyone else avoids them for weeks at a time.  It's not my fault you wont treat the pain you put yourself in and continue to abuse your body for no good reason even though they know they will be in pain (and be a pain in the ass).

2) This person I could be very happy if I never had to see of or hear of again for the rest of my life.  I don't hold grudges and am pretty easy going but this person I absolutly genuinely hate and thankfully I no longer feel guilty for hating this person like everyone thinks I should be.  This person is a long-time, in-and-out drug addict.  They have caused much pain and anger in the family.  During one of his 'unclean' times when he was using IV drugs and having unprotected sex with a person he barely knew, they ended up with Hep. C.  Well this person went through a chemo type of treatment and decided to use that as an excuse for basically verbally (well email) harrassing me.  Oh and this person blames the partner for everything and then willingly took a perscription for pain killers during the chemo but it wasnt their fault either, the dr pushed them :S So because of their complete negligance and 'god-complex' (nothing can go wrong with me and if it does i just blame everyone else).

3) The third person is kinda the most recent.  As far as I am concerned, they are a hypochondriac that always wants to 'compare' and rate other diseases.  We went for a good year or so with this person mimicing my symptoms (with just a slight varience).  They were finally diagnosed with "fibromyalgia" (Don't get me wrong I totally believe this is a real disease but it is way too often used as a 'stop bugging me about this so I will give you a disorder so you will shut up').  Long story short, they then started to abuse pain medications and had other family members looking at me and comparing our situations.  This person was very easily convinced into having a gastric bypass surgery that has lead to full out drug addiction (buying Rx meds on the street and stealing their son's adhd meds), possible anorexia (they are sickly looking) and a whole lot of other mainly psychological issues.  This person never did the pre-counseling and stuff that the doctor told them that they had to do before surgery.  Even worse is that they used post-op 'issues' to score more drugs and underwent a second surgery again so they had a script for pain killers.  This person has never gone for a follow-up with the clinic in the states that performed the surgery.  They also do NOT follow a healthy diet or any type of follow up medical care.  These are very important (and stated in the pre-pre-op seminar tha I ended up going with her to as I knew the area better than she did) as they keep a close eye on different levels in your blood and urine as let's face it, a body is not equipped to handle a gastric bypass and you are basicaly starving your body of absortion of all your minerals and necessary vitamins.  The least you should be doing is getting a local dr to order blood tests pretty frequently to try and avoid serious health issues.  Well this person did none of that at all.  The last time that the police were called and took them to the hospital and put her in on a 'hold' they did bloodwork and found out that this person has Rheumatoid Arthritis.  Well I did a quick 5 second search on google and find out that this is a very very very common outcome in a person that has had gastric bypass normally and that basically that if you dont follow a healthy diet and vitamin regieme, your doomed.  This person has also screwed up her entire health history because they wanted to take the easy way out (they had lost quite a bit of weight on WW) with their weight problem (which really wasn't overly horrible) and decided to just not go to any follow-up visits with their doctors in the states nor their doctor's in their home town.  Becaues of the original surgery, there are very few medications that can be taken to help the RA and it is a procedure that can not be reversed.  So yes, they may have a smaller body but they are only in their early 30's and have a body that completely shut down because it was being abused.  This person is also on a methadoe treatment plan for addiction becasue they had a perscription pill addiction (of course it's the doctor's fault again) and is waiting to get into a inpatient treatment center, however there are very few in our province and they will be waiting for quite a while to get in.  So add to the gastric bypass, the RA, the other vitamin and mineral deficiencies that they are a drug addict and if they ever try going back on pain killers to help the pain, they will end up back at square one as an addict all over again.  We are heading to their hometown next weekend and I am just dreading it.  Every visit up there turns into a full on debate about this persons latest issue in their life.

As someone how has serious health problems that I have absolutly no say in, I just cant feel sorry for these people who go out and end up with diseases just because of pure negligence on thier part.  I save my empathy and concern fo those who do not create their own health problems and are very very involved and proactive in their own health.  I know this probably makes me a horrible person but honestly, i just dont care.

*PS I know there are horrible grammar issues in this post but I wanted to keep it pretty neutral and not slip up on something.

04 October 2010 @ 01:56 pm
I think I am going to move.  I like the security options on another blogging site so think I will try it out for a bit.  If you would like the link to the new blog just email me and I will send you the link.  Going to be transfering some of the more recent entries over to the new blog, or the ones that are important (medically wise mainly).
26 September 2010 @ 04:11 pm

Well after complaining recently that the one medication I was on was causing weight gain, I found a very easy solution to getting back down to my normal weight..... get horrible ill with a stomach virus!  Tuesday I went and had my xrays done of my cervical and thoratic spine, came home, did some running around, went into Kyler's karate lesson and came home.  All was perfectly fine until 11ish when I started getting a little nauseus.  By 12 I was permantnely in the bathroom, had to call my mom down, drenched in sweats, freezing and this kept on for 3 hours!  Then had the other end of the stomach flu until 9am. It was NOT a good night.  Spent wednesday in bed with fevers, sweats and chills alternated with being so hot that my mom actually turned on the air conditioner!  Since tuesday night I have had the following to eat - three banana muffins, three packs of fruit snacks (real fruit), one glass of chocolate milk, two cookies and two small granola things.  Needless to say my stomach still doesnt like me but at least it's staying calm.  I just can't be around cooking food or most cooked for that matter and can only stay upright on my own for about an hour at a time (i mean sitting at the computer upright, not walking around upright!).  No one else in the family has any even tiny sypmtom of this so we have no clue where I got it from.  Mom is starting to wonder (again) if I should NOT be volunteering at the school as I seem to have little to no immune system (forgot to get the blood tests I wanted down when I saw my GP as he threw that whole osteoporosis thing on me).

So I hadnt started either of my new medications but I did drop the dose on the neurontin and the great thing is it is working just as well with one pill as it did with two, and hopefully the weight issues will resolve.  I did finally break down and take the Actonel today as I didnt think it was a good idea that I had no vitamins or calcium food (except that one glass of chocolate milk) since tuesday which probably wasnt a good thing.  And with the way I am feeling, I wont really feel the side effects (achey and pain) with the crap already going on.  Once I get this stomach thing settled down I will start on the ones to try for the dysautonmia even though I am kind of scared of them with stuff I have read about them and with them being an SSRI.  But I really really want to get these sweats under control so I can have some sembalnce of normal life again.

Funny thing is that mom just went over to get me some gravol and they were basically all out and the pharmasist told her there was a bad 24-hour stomach bug going around.  I am going on 5 days!  24 hours of puking and stuff then 4 days of feeling horrible.  At least I did manage to get to Kyler's grading.  It was touch and go and I loaded up on Dramamine before hand but I made it.  Wasn't going to miss that for anything!  He is now wearing an Advanced Orange Belt :D

19 September 2010 @ 04:32 pm
Had my MRI today for my cervical spine so we have fresh scans for my new neurologist to look at and we dont have to waste that first appointment with ordering tests.  Get there and find out that even though the dr's office said I didnt need xrays that I was supposed to have xrays done.  Being sunday the department was closed so I have to go back in tomorrow to get them done.  As I have done this often enough I wore clothes that had no metal at all in them so I wouldnt have to change into one of their gowns.  Got in pretty quick and the guy gets me on the table, locked in, headphones up and a pillow for under my legs and he puts me in the machine.  I hear one test be done and then he comes on the headphones and says he is pulling me out.  Apparently when I had my legs crossed and arms over my stomach my spine was crooked so I had to get readjusted.  After that it was fine until about half way in when my left leg, right at the pelvis started to hurt real bad and get spasmy yet I couldnt move it to help the spasms.  I barely was able to sit up when the scan was all done as my legs were in such bad shape.  So glad that I took the pre-test dose of pain killers before hand!  My shoulder is now killing me becasue of the position I had to be in and the thing that locked my head into place kinda dug in at my shoulder.  I didnt really notice it until half way through the scan when it started to hurt.  Oh well it's over and hopefully will answer some questions come november!  At the end I asked how I would go about getting a copy of the scans so I could take to the neuro in case I got a cancelation appt in London so they told me that when I come in tomorrow for my xrays, just ask at that department and they will put them on a CD for me.
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17 September 2010 @ 04:21 pm
Kyler went to his first birthday party of the school year tonight.  He comes home with his goodie bag and goes through it before I get upstairs (I was sleeping as we had worked the book fair that day and had rented a movie for that night so was getting a nap in).  I go upstairs and I could smell the Axe on him even after he had changed into his PJ's.  The majority of body sprays (or any fragerence really) just make my sinuses painfull.  I get the full on allergy affect, runny burning eyes, cough, hard to breathe, sore throat etc.  I then find out that my little man was thinking about me.  I find out that he got a small travel sized can of Axe in his goodie bag and that when he first pulled it out he went right over and threw it in the garbage.  I told him that he could keep it and just use it when I am away for shopping weekend which he was happy about.  Mom then tells me that he won a normal sized can of it for a game and when he got it, he went up to the mom and said "My aunt's allergic to this so I can't use it" so she gave him a different present.  All this all on his own because he knows I can't tolerate it.

I love my little man, just hope this type of stuff doesnt come around often.  Times he has to not do something because it bothers my health.
16 September 2010 @ 02:39 pm
Wasn't sure how this appointment was going to go after the news I recieved at my GP's appointment a few days earlier.  We got in and he asked how things were which I didnt really have an answer for. Mom mentioned the bone scan so he looked it up.  After taking a few minutes to read it he said that there wasnt nothing to worry about and my numbers weren't that bad.  So I mentioned that it was the rapid decrease that was bothering Dr. B.  Dr. W looked at it again and completley changed his opinion and said that it definitly needed treatment.  I gave him the sheet with the three options Dr. B had suggested: The IV option or Fosamax or Actonel (pills).  He immediatly ruled out the IV treatment as it is known to cause weakness in the bones of the jaw and he didnt want that so he immediatly wrote up a script for Actonel.  He tried to keep it light joking that he didnt know why they made a pill that you only had to take monthly and if the drug compaines thought so little of women that they couldnt keep track of pill each day.  He then asked about supplements and asked exactly how much I was getting and he thought it was thourough. He also mentioned that we had to stay on top of this because if something catastrophic happened it could be very bad for my health.  What he said next though kinda got mom and I thinking.  He said that with my history its pretty likely that I have already suffered a fracture but then just passed it off as a dislocation or a bad sprain.  Made me think of all those times that I have a dislocation and put it back in but I get that real achey type of pain for days after.  Or the weird pains I keep getting in the top of my foot.  Might have to get the next batch xrayed if it happens it again.

I then told him that I had gone to see Dr. M (an Orthopedic Surgeon) about my shoulder and that he told me he didnt think it was my shoulder, it was my neck.  Mom and I are conflicted as to what he said next.  I thought he said "Yeah he never does", I can't remember what my mom thougth he said but it was more along the lines that the dr readily passes patients off.  Either way he didnt seem to put much credibility into what the OS said.  He wants to see if my neck being 'better' if it will help the shoulder.  He wants me to wear a soft cervical collar for two weeks and to see if that makes any difference.  He didnt seem to really believe me that I end up taking braces off while I sleep during the night and said that this one was perscribed so it would stay on ???  I mentioned that the collar tends to make the muscles in my neck go insane with spasms and he said something to the effect that my body reacted strangely to things and was just odd lol.  I dont think it will help but I will humour him and try it.  He mentioned physio and who I had tried and what was done and then goes "Dont worry, I am not sending you to him but this guy is good" and gave me an address for the future if it is needed.

We then talked about the Neurontin and I told him how it helped the nerve pain immensly but it also was causing weight gain to which he replied "8%" so I take that to mean you on average gain 8% of your body weight while on the medication.  He didnt seem to worry about it and said that a pound or two didnt really matter then I told him it was more like 10lbs.  He then suggested that I cur back to half a dose (once a day instead of twice a day) and see if that helps.  He then wrote up my long-term pain meds and my breakthrough meds and that was it.  I go to see him again in 3 months.

I walked out with a ton of papers!  I had:
1) script for Actonel
2) script for Neurontin (with the directions stating "take as directed")
3) break-through meds
4) long-acting meds
5) referal sheet to the physiotherapist he likes (but not an actual referal)
6) script for a soft cervical collar to be fitted (I have looked before and I need a pediatric one and I already have one)

So all in all a good visit.  I did forget to ask him about bloodwork though :(  I want to get my ANA and Rheumatoid Factor checked again, just in case).
15 September 2010 @ 08:46 pm
Well I am torn about which way to go.  I am talking about whether or not I should stay on the Neurontin.  Little backstory is that I got up to a pretty high weight at one point and worked really hard and lost 30lbs.  I still had another 30 to lose but was very happy with where I was.  I am on a few medications that can cause weight gain.  I managed to stay at that weight for over a year and had got some confidence back and was happy with what I was.  Then I started the Neurontin :(... in the month or so that I have been on it I have already gained back 10lbs that I lost with no noticible change in eating habits.  The neurontin is great in that it takes away all the nerve pain (burning, gnawing etc) in my shoulder which allowed me to cut down on my breakthrough pain meds.  I can't decide if I want to work at keeping my weight lowered or kinda give up on that 'dream' and be without nerve pain.  I go to my rheumy tomorrow and if I want to stay on it I have to ask him for a refill.  I am just so torn.  The other meds list it as a side effect and the depo provera originaly was the cause of all the weight gain but it doesnt change my weight at all anymore, some of the other meds cause cravings for non-healthy foods but again, no obvious weight gain from them.  I just honestly have no clue what to do :'(
14 September 2010 @ 10:12 pm

Well I was already kind of nervous going into my appointment today.  I had made this appointment with my GP close to a month ago (non-urgent appt) to discuss the possible SSRI meds for the autonomic dyfunction issues.  My mom decided to go with me as my GP seems to take me a LOT more seriously if my mom is with me, doesnt brush things off as much.  We got in real quick, only about 30 minutes in the waiting room which is a real short wait for him.  Went back and saw the nurse and went over why I was there, what was new etc etc.  Got those things covered and was then taken into the next room to wait for Dr. B.

He comes in, goes through the pleasentries like it's good to see you, how are things going, what are you here for.  I staarted talking about the conference and how I had a consultation about and confirming the dysautonomia.  I guess he thought there would be a note as he asked me to stop and started looking up my profile online.  He pulls up and asks what Dr. W sent me to xrays for and I was confused but mom realized it was the bone scan.  So out pops 'So you have osteoporosis now'.  What do you say to that???  I just went 'Oh'.  He then saw a specialist note from the OS but I told him I went to see him for my shoulder but he thinks its the neck.  He then asks when I see Dr. W again (thursday) and starts going over all of my options about treatments for osteoporosis but that he isnt sure if I would actually be eligible for them because I am only 28 and studies generally havent been done.  He mentioned three options:

1) Have an IV drug annually.  I would have to go to the hospital for this and it would take anywhere from 15 - 30 minutes for the medications to be infused.

2) There is apparently going to be a new drug coming out really soon (as he is seeing reps for it at the end of the month, more on that later) that has to be adminstered twice a year as a sub-cutaneous injection.  Done at the doctors office.
3) Pills that are taken once a week such as fosamax.  However he questioned drug coverage of this one and it is pricey (nice that he thought of that!)

However, the final decision was for Dr. W to give suggestions and to find out if he thinks treatment should be started asap or wait a bit longer.  Once I got a copy of the DEXA results I found that there was no significant change in my back since 2006 but that there was significant change to my hip.  I guess I would more acuratly be classed as Osteopenia, but as this has all come about in the last 4 years my GP thinks it should be treated now before it gets worse but wants to know my rheumy's opinion.  He then kind of let the reason for this to slip...  He has never heard of anyone my age with these scores.  Even the test results cant answer some of the categories as there are no data to compare it too.  The drug rep for the twice yearly injection is going to be coming in a few weeks so Dr. B really wants to quiz him/her about this at my age.  So basically we are at a stand still until I see Dr. W and he talks to the drug rep.  I already take calcium, magnesium and Vitamin D daily at the recommended doses.  He wrote down a few of the medications that might be tried so I could ask the pharmisist which (if any) were covered.  Thankfully when I asked the pill forms are completly covered and the IV medication can be covered with some paperwork my GP (or perscribing doctor) would have to fill out.

We then got to the reason of the appointment and I told him about the consult, seeing Dr. C (Internist) and her agreement that SSRI's could be tried but that she was not confortable doing so.  Dr. B had no hesitations at all about giving them a try.  In fact he even went out and got me two weeks worth of medication in trial packs :D  He did mention that it might make me more tired (as if I could get more tired) and that it would take a long time for any results to kick in but that he had no problem going through that trial period.  Mom brought up my worsening headaches and he feels that the SSRI combined with the elavil will help get them under control again.  Mom also mentioned that we were switching from Dr. S to Dr. C for my cardiac needs and he didnt seem to surprised and really praised Dr. C and kinda made me feel like he wasnt too fond of refering to Dr. S anymore, stating that he relies too heavily on machines and doesnt always fully listen! (as a side note, a find out after I 'fired' Dr. S that my dad has also wanted to switch doctors for a long time, just didnt know who to switch to so we are going to ask Dr. C if she will take him too)

We then went to the pharmacy where I found out about the osteoporosis meds and also found out that the SSRI he put me on is also covered which is such relief as I don't have the money to pay for another out of pocket cost (the neurontin I have to pay for myself, thankfully its not that much).  So all in all, it was definitly an unexpected appointment.  Usually I come home and thouroughly research the new medications that I have been perscriped but I have been only looking osteoporosis so I can be knowledgable when I go to my rheumy on thursday.  I am going to wait to start the new med until next week as I am helping out at Kyler's school's bookfair this week.

Honestly this one has kind of knocked the wind out of me.  Usually by the time things become a problem, I have already figured out the diagnosis, or at least have a strong idea of what could be wrong.  This was just a normal dr's appt to discuss a new health issue and medications and I get blindsided that my bone density is decreasing!  I mean I knew it would happen, but I figured I would be significantly older than this when I got it!! I now am second guess if my bad hip pain this last year or so has been linked to this low bone density.