Sunday, October 31, 2010

I almost did it

I think I have mentioned here that I have recently (a few months) been diagnosed with osteoporosis.  My numbers are actually in the osteopenia range but due to my age and the quick decrease in numbers I am to be refered to as having full on osteoporosis.  My GP (Dr.B) gave me a list of different medications that could be tried and my Rheumy (Dr.W) and I (and my mom) discussed which treatment would work best for me.  We decided that the one that you get as an IV once a year was automatically out because of my veins and even just having to due one IV a year is enough for me as IV's are extremely painfull.  I had major knee surgery and when I woke up I didnt care about the knee pain, I just wanted that IV out asap.  I didnt care if it meant having to use lesser pain meds, I just wanted the pain of the IV gone!  Dr. W took another off the list because it could lead to jaw bone death and at my age he doesnt want to chance that so we settled on the only other option which was Actonel (the bi-annual injection is just becoming available here and we highly doubt it will be covered by my 'insurance' unless other meds have been tried and ruled out).

Just as another quick note - I take all the proper supplements, have added quite a lot of calcium rich foods to my diet, and don't drink any pop or any of the other stuff to avoid.  I do not get enough exercise but with the state of my body that is just not much of a reality.  So I started the actonel.  The pharmasist told me that I would probably be achey the day I took it and to basically just have an 'off day' and it will pass.  I took it in the afternoon as that is when I finally wake up and felt fine for the rest of the day.  The next day.... pure hell!  The worst pain in my back and legs that I have ever felt!  I doubled then tripled my pain killers, advil every 4 hours, heating pads, ice packs and anything else I could think of.  Thankfully I only have to take this once a month and I guess 12 days of torture will make up for preventing serious injury in the future.  Just don't make me mad on that one day a month as I am very very grumpy.

Well my 'off day' happened to fall last thursday.  Tuesday's and thursday's are K's karate days.  I made a promise to myself when K was born and I started having health issues that my health issues would NEVER interfere with his life, I would never miss an important event in his life because I didnt feel good.  Last thursday K got his second stripe of his advanced orange belt.  After that we had to go to Walmart so K could get a present for his friend's birthday party the next day (OT - who sends a birthday invite out on monday for a friday party in a small town with no real stores to buy presents at???).  We got to the store, I got a cart out, saw the few motorized carts and looked at them and kinda-joking but serious that I should just take one of them.  Mom in all sincerity told me to take one and see if it made shopping easier.  Well I get enough dirty looks just parking in a handicapp space, I couldnt imagine the dirty looks I would get riding around in one of them.  So 'pride' won out over reality and I walked the store, got home and downed more pain killers that night than I usually take in an entire week.  Next month if we go shopping on the off day I will be using one no matter what!

Tuesday, October 26, 2010

The first step...

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.

Thursday, October 21, 2010

Not impressed :(

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 >:-(

Thursday, October 14, 2010

Am I A Horrible Person?

... 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.

Monday, October 4, 2010

Title for my blog

I can not figure out what I should name this blog.  I have a few ideas but none of them really stick out to me.  Here are some ideas:

The Life Of A Zebra
Journey Of An OddBod
The Path I Am On
Genetic Mutant 101
Welcome To My World
Beware You Are About To Entire My World / Mind


Saturday, October 2, 2010

Trying this out

Well I have had another blog for quite a few years now but it doesnt have the privacy features that I would like.  Plus it has stuff on it from a long time ago and situations have changed.  And it was easy to find if you knew I had a blog with a certain provider.  Going to play around with this one and see if I like it.  If I find that I prefer this site, I will move over the more current posts dealing with the health issues I am facing.