Saturday, April 30, 2011

Medical Update

Right off of the bat I must say two things: (1) I am sorry for the major lack of updates, as I said in the last post there have been quite a few issues going around my head that I am trying to sort out before I post and I know if I start a post on it, I will just go off on it all before my mind is made up. (2) This is most likely going to be a very very long post as there are quite a few topics to tell about and some I have to kind of go back in time a few months (or years) before I can explain the problems.  I thought about doing this in many smaller posts but I think (as I am writing this opener) that I will keep it as one (that may change when I get finished though!).  Okay, so here it goes, in order of mildest to worst (or in my mind the least frustrating to the most frustrating):

Couldn't See a Friend
This one doesnt really fit in to the medical category until you dig a little deeper.  S is a good friend that I met in the winter semester at university and we have been good friends ever since.  He is probably the one that I keep in contact with the most and even though I dont get to see him often, I know that he would be there if I ever needed him (and visa versa of course).  He was going to be in a city close to me a few nights ago and asked if I could meet up with him and we could go out to dinner and do some stuff.  Well it was a little over an hour drive and I just didn't think that it would be a good idea.  He even offered to let me stay at his hotel over night to rest up for the trip back but I still had to decline.  Not impressed about that as I haven't seen him in about two years.

Getting Less Coordinated!
Just this last week I have done two stupid things that have both led to pain and injury.  The first one was slightly over a week ago when I was carrying my laptop in my left hand while coming down the stairs to go to bed.  Well I tripped over the last step and managed to ram my hand into my door so it was squished between the frame and my laptop.  Was very tender and sore and I still have a bruise there with some tenderness still.  The recent one happend on thursday night when I was sitting on the couch and went to let my dog out and I got all wrapped up in my blanket and tripped.  Thankfully (???) I caught myself on the two end tables before falling flat out but I really did a number on my body.  EVERYTHING hurt that night and I was in a lot of pain.  My back is still spasming if I set wrong but the rest of it seems to settled down.  Tonight I almost missed a step and fell down the stairs and have been getting shakey and off balance quite a bit lately.

Headache's Returning and Pain Level Increasing
Not that big of deal but I have been waking up with the old headaches almost everyday now but if I go back to sleep it seems to subside.  I know I am overdue as this medication hasnt been changed in a very long time but I just hoped it would stay like that.  Going to have to ask about incresing the dosage next time I see my family doctor.  I have also been in a lot more pain lately.  I am not bad through the day but by around 7 or 8 at night everything just starts to hurt really really badly.  My hips have gotten so bad lately and sitting in one spot for a long time (even just to sit for dinner) makes them feel like they are popping and building up pressure.  I am not sure what actually is going on in there but it will have to be mentioned to my rheumatologist when I see him next.  An increase in my long-acting medication may be needed which isn't too bad as I have been at this dose for a significant time frame (by alternating this med and another similar med instead of higher dosages when building up tolerances.)

Medication Not Working
Again, doesnt seem too important but for me it really is.  When in Baltimore at the EDNF conference one doctor 'diagnosed' me with significant autonomic dysfunction (my internist at home then confirmed and made an official diagnosis of sever autonomic dysfunction).  One of the most debilitating and depressing symptoms of this is very very increased sweating.  He gave me a few medications to ask my dr about and I started on one of those medications (at the dosage he suggested) in september and we noticed from about december - february I was actually dry most of the time.  Even situations where I would have been drenched and dripping sweat (literally) I would remain dry.  However it all came back with a vengance and I am already back to the massive sweats again.  Not sure what we are going to do about it next, either try the other medication and using an alternating schedule, increasing the dosage or just scrapping that idea all together.

New Specialist?
Who would have thought there is a specialty in medicine that I have yet to explore?  The doctor - a gastroenterologist.  I have had certain lower GI issues for years now but some things are starting to show more and more frequently that I believe I should be getting myself checked out.  Not to go into any graphics but this could be a very serious problem or a very simple one but I really have no clue.  I just really really don't want to have to go through the test that I am sure will be the first one ordered :S

Right Knee and Subsequent Problems
I touched on this earlier with talking about my hips.  As you know I injured my right knee at Christmas and am still on the path to getting it fixed.  I am a lot better, no crutches and can walk normally without a limp (unless I am tired or too much walking).  I am able to drive short distances myself and have been able to sit comfortly for the most part.  However all is not better.  I still have pain in it, still taking breakthrough pain meds a lot more often than I would like to and still frustrated by it.  Looking at the scans done earlier though, my left knee is in more dire need of fixing then the right.  However, as I said to my mom, I have already had three operations on my right knee.  Since damaging it at Christmas I have had significant pain increases in my left knee, left ankle and more worrying is that both my hips are in a bad spot right now.  I start walking and can literally feel that my left knee cap is not in the grove and have to do some bending and stretching to make it feel better.  My hips have just been bad with a lot of pain and they will be the next thing I talk to my rhuemy about. 

Anyways, since I have already had so many surgeries on my right knee, and that I know it`s issues are causing the other joints to start to fail, if I am going to have 'experimental'and 'tricky'surgery, I would prefer to have it on my knee that is already damaged instead of starting the surgery process on another joint.  I am not naive and know that other joints are going to be operated on in the probably not too distant future (5-10 years-ish I am guessing) then I would prefer to mess up a knee that is already messed up instead of having two messed up joints.  I know that most people probably won't understand this but thankfully my mom seems to and really wants me to express that feeling to the surgeons when I see them next week (eeks!!).  Just hope I can explain it well, in front of my dad, so they understand and don't think I am crazy.  I just want to get rid of some of this pain and instability!  I can't go for bike rides with my nephew, can't go out and play soccer or badminton in the front yard, can't go for walks with my dog and most disheartening is that we are thinking of going to Flordia in the next year and if something isn't done, I won't be able to go on any of the rides and will be having to rent a wheelchair / scooter to just survive (which I really don't want Kyler to see me in as I dont want him to realize that I am not normal).  I am only 29 years old and I swear that my 86year old grandmother has better leg joints than I do!!
I can't believe how long this is going to be!!!!!!!!!!! I am so so sorry that it is long.  I have taken the last topic point out and will put it up by itself as it is so long.  If you have gotten this far --- thanks for reading :)

Sunday, April 24, 2011


I apologize for the lack of posts lately.  As I said in the last post, I have been having a lot of things on my mind lately.  The family aspects have been really confusing and hard to deal with and trying to figure out where I draw my lines in the sand and where I need to seperate myself from it all just for the sake of my own emotional health.

My mom also has come up with a new health theory that we have backed up with blood tests and have been looking into what I can do for that, without going to a doctor to try and get certain medications perscribed.  I have also had one medication start to fail but am in a waiting game with multiple appointments this next month and needing them in a certain order.

So just wanted to say that things are okay here, I have not disappeared, unless you count me disappearing into my own mind to figure things out.  I injured my wrist tonight (was carrying my laptop and went to walk through the door and managed to jam my wrist pretty hard between the laptop and the door jamb) so it's splinted and pain meds taken or I would probably just keep going on rambling on here. 

Saturday, April 16, 2011

Another long overdue post

There have been a lot of things just kinda floating in my head lately.  Family stuff, health stuff, life stuff etc that I haven't really been able to figure out how to put into words so I have just not blogged.  I realize it's been too long (in my mind) since a post so I am going to try to get some of that 'stuff' out, mostly likely in point form-ish style or many subparagraphs.  So here goes:

Brother stuff: Most people (except Sarah and Jen) know that I have a brother who is 9 years older than me (he was adopted) who I actively despise.  I don't normally hold grudges but sometimes you can't just forgive and forget. He is a 'recovering' drug addict with hepatitis C who lost custody of his son (my nephew) when he was just 15 months old (he had only had him for 8 months).  He is person #2 in this post.  Anyways he has a GF who has a daughter and have been coming out to the house once a week or so.  I believe he has some serious phychological problems steming from the years of drug abuse.  Anyways these are the thoughts I am having:
  • Just how many chances can you give a person?  After giving chance after chance and getting hurt in the process, do you give another chance?
  • BGF and mom were talking about K and got out that Brother and BGF have no plans to try and get custody of K.  Brother says that he would not put K through that and knows that he is best here with my parents and I.
  • However, it was not mentioned that is something happens to my parents, I am listed as their choice of guardian for K.
  • Apparently brother really wants to have a relationship with me.  He is very concerned for me and all the health problems that I have and hopes that one day, if something happens to my parents, that he will look after me, if i let him or keep an eye on me if I refuse contact.
  • As a strange side note, it is really weird as BGF is 7 years younger than I am.  BGF's mother is only 3 years older than Brother!!
  • Mom says that she told BGF that as far as she and my dad are concerned I am the person in the role as K's mother.  Would be nice if I got a little recognition of that, like a card on mothers day :(
Health Stuff: I went to see a doctor and got my annual echocardiogram to check out for any structural issues or prolapses.  I have never really been told if I have mitral valve prolapse or not.  My old cardio would tell me one year that I had it, the next yeat that the person who told me I had it was wrong, that it was very mild etc. etc. This guy does a full half hour exam!  The old cardiologist usually did it for 10 minutes top!  He told me that there are no structural issues and he does not believe that I have MVP but that he could see how another doctor would diagnose it as MVP.  He was very nice and I can't wait for my appointment with Dr. C (my internist and new cardiologist)!

Family Stuff: The person who was having issues is back to having issues which means that that is the only thing that gets talked about and it's just such a big mess up there is is disgusting.  They now think that that person is taking other's medications and selling them to get some money as they have severe money issues (despite the big TV, Xbox, PS3, computer, laptop and more pets that anyone would have a hard time looking after financially!  Anyways, enough about that person.  The main thing that has happened is that one of my aunts asked if I would go to her house (3.5 hours away) and house sit for them and watch their pet cat and rat while they go on vacation.  My mom instantly shot her down as saying that is too risky.  With my recurrent dislocations, the shape my knee is currently is in and just all my health issues that it is just not safe for me to do so and that they would be worried sick about me especially since it's a really small town and I have no clue as to my way around their area.  Apparently she apologized and said that she never had any clue that I was in the bad of shape and ill health.  I only see this person twice a year.  One weekend when a bunch of girls get together to go shopping and such and for family christmas.  On both of these occasions I am determined to have fun and be normal for a few days.  I hide my pain and don't mention injuries and honestly my family really have no clue as to the severity of my health issues and how it is dangerous for me to be left alone in a strange house and a strange city for a week.

Well I believe that is about all that has been flying around in my head.  My parents went out tonight so K and I ordered in pizza and than watched the new Harry Potter movie.  Then when my parents got home, mom and I were going to watch Buffy but the Blu-ray's sound was off. After not getting much help and getting really grumpy about it I gave up on finding new cords and just pulled the unit out so I could get back in and 'reboot' the blu-ray and it worked fine after that.  Bad thing is that when I went to get down on the floor to feed my dogs (a lot easier for me than bending down!) I felt a strange feeling in my knee and have had an increase in pain levels.  We have been having a really rainy and damp day so I hope it is just that and that I haven't hurt it more than it already is!

Sunday, April 3, 2011


So friday went well, K got his Blue belt with no problems, he was in a very very big grading class (20 kids!) so it was pretty late by the time we got home (for him at least) so we watched some TV as he was wide awake and then we all headed off to bed.

Saturday he had lots of fun!  He went to his first sparring class where they are now actually teaching them the point system and how to actually spar (before it was just get your gear on and go at it to get them used to the gear and stuff) and he stuck around to watch the adult's spar as well which he enjoyed.

At around 5, mom, K and I headed into Sarnia for a night out.  We went and bought our tickets for "Hop" and then went out to supper at Harvey's.  While there they actually were handing out free samples of their chocolate milkshakes so we got dessert too ;)  We got to the theatre early as it would be a packed show so we all got our drinks (and I got popcorn, you can't go to the movies without popcorn!) and got good seats (I have to sit on an aisle so I can stretch my legs out).  The movie was really good and really funny for both adults and kids.  The only annoying thing was that after the lights went down there were at least 3 familes of 5 coming in to try and find seats together, well that didn't happen as it was packed.  I mean it's the second day the show is open, it's the 7pm showing and you figured you could just waltz in when it started and get great seats?  We went to walmart after as K needed some new rubber boots.  We did some looking around and I picked up some items I needed as well before coming home and watching the last episode of season 4 of buffy.

Today, sunday, sucks!!!  I am in so much pain it's not even funny.  My right knee is all swollen up again and I can't bend it, my back from midway down all feels ''off" like all the vertebreas are dislocated or something, my legs are still feeling very weak and my fingers and hands are so swollen I can't even make a fist.  Add to that that my brother's girlfriend and her daughter are out (my brother is out west working) so I couldn't really nap or anything because we have a 4 year old and 9 year old upstairs.  And I believe they are staying for supper which really bugs me as I feel horrible, look horrible and was just hoping to ignore it all.