Monday, April 30, 2012

Dentist Appointment

I knew going into the appointment that I was going to have to get a few more fillings, and becasue I can't have local's or sedatives that means that I have to go under a general anesthetic to get just simple fillings done.  There are two caveties and 2 places that have small chips that will eventually end up with caveties so they want to put a filling in those to prevent them.  I am also asking when I have the surgery about them putting caps on some of the molars to stop the deep pitting that is so common in EDS.

There was a surprise though, I got back in the chair and the hygenist was going over my health history and medication list and said well you definitly have severe dry mouth, I can tell that just from hearing the talk.  That was surprising as I had just downed half a bottle of water!  We talked about it more and she was surprised at how dry my mouth was.  I then got up the courage to ask if this was medications that caused it.  She told me that yes some of it was medicatoins but it was beyond dry mouth just by medications.  I told her we were talking about autoimmune disorders and she confirmed that she believed that with the severity of the dry mouth, she would consider that a very positive sign of an autoimmune disorder.

The gave me a sample pack of Biotene products, told me to use a fluoride rinse nightly and to always have a bottle of water on me to drink.  They had a surgery date of May 11th but unfortunatly I couldn't get an anesthesiologist consult in time for that date.  I will be having it done this summer at some point.  The thing that sucks is ODSP only covers 1 cleaning per year!!!  So I am going to have to look up prices and see how much I would have to pay out of pocket to get cleanings more frequently.

Wednesday, April 25, 2012

Mad at EDS

Well I am officially mad at EDS.  I have always always took pride in the fact that I never (and would never) let it interupt my time with my nephew. (I also realized I have never really mentioned important things about my nephew which I will at the bottom).  Even if I was sick, I still went to his activites.  I have never missed a grading for his karate, even though one time I had the flu and couldnt keep anything down (stayed near the bathroom for that one!) and have also been on crutches during one and many various other minor health issues.  That was all until today.

A week or so ago, K brough home a permission form to go to see the new Disney movie 'Chimpanzee' with a bunch of the intermediate and senior classes at the theatre in town.  They wanted some parent volunteers so I asked K if he wanted me to go and he definitly did so I signed up.  Yesterday mom went in and talked to the teacher about it and found out that I could ride on the bus and go as a chaperone instead of just a 'parent'.  Kyler was excited and I was so happy to have a field trip that I could actually do (can't do the outdoors type of trips or anything physical so am limited to what trips I can go on).

Last night we were at his karate class (he got a stripe :) ) and I went to move over on the chairs to get a better view of him and my right knee shifted at the same time as a muscle spasm and subluxed pretty badly.  Mom was very worried and I apparently went white.  Of course I didnt bring my purse so even if I wanted to go to the ER to get it looked at (and documented), I didn't have my health card to do so.  I also didn't have any of my pain medications or even some advil to counteract the swelling.  Once class was over I managed to get up and get to the van so we could go home.  I got that lovely trifecta of pain - nausea, cold and sweating for the entire ride home.  We got home and I got changed and headed for the couch where I put ice on and off it for the rest of the night.  Mom looked at me before I went to bed and 'told me' that I was not going on the trip as I couldnt sit in the theatre seats that long and being on the bus (with steps) wasn't a good idea. I reluctantly agreed.

So today mom went in and told K's teacher about what happened and she was slightly shocked at home much damage I could do without actually doing anything.  Mom told her that this was why I couldn't normally volunteer for things as I never knew what was going to happen and always hated to have to cancel.  K's teacher was sympathetic and told mom to tell me to not worry as there would be enough parents at the show so she wasn't going to be short on volunteers.  I still felt horrible, not because I wasn't there to help the class, but becasue it was something I told K that I was going to do.  Mom talked with him this morning about it and he seemed okay with it (he knows the basics of EDS and also lives with me day to day to see the actual living with EDS) but it still bugs me.  I was almost in tears when he got home and I apologized to him.

This was one aspect of my life that I refused to let EDS take over.  He had a pretty crappy beginning to life and I was never going to let EDS define anything about our relationship.  To those that don't know the breif story is that when K was born he lived with his mom until he was 6 months old and she had a nervous breakdown (she has schizophrenia and now lives in an assisted living complex as far as we know) so K lived at my parents house with my brother for a few months that summer (I was also at home because it was school break as well as I had just had major knee surgery) and after a few months children's aid thought he could handle K alone so my brother got custody of him when he was around 8 months.  I never liked this set-up and knew from day one that at some point my parents would have custody of him (during the time at our house my brother was stealing my pain meds so I knew something was up).  I went back to school and things seemed 'okay'.  I got a call the next march from my mom letting me know that everything was okay but K had been removed from my brother's custody and thankfully was now in my parents custody for the time being (we had discussed this outcome before and my parents said that the main goal was we never wanted K to go to foster care and that my parents would do anything they had to do so they could get K).  K has never left our care since.  Both parents gave up their rights and were glad that my parents had custody so thankfully it was an easy case with no disagreements.  When I finished school and my health declined so fast I was fortunate enough that my parents had no hesitations about me moving back in full time, it was just expected and actually made things a lot easier as at that time both parents worked full time (both are retired now) and they had K to look after so I stepped in and did what I could to help out.  So that is where we are now, my parents house and they have custody of K and I live there as I could not manage on my own.

As I learned of the EDS I immediatley knew I wasn't going to be having kids but realized I lucked out and get to have the same experience and love with helping to raise my nephew.  Just sucks that after fighting so hard EDS finally won out today.  I will be doing everything I can to make sure that it never happens again!!!

Sunday, April 22, 2012

Yet Another Bad Doctors Appointment

I hadn't posted this yet as it was really bothering me and I just wanted to forget about it.  But enough timw has passed now that I can finally see it as just another horrible doctors appointment.  This appointment was made a few months ago by my GP because I had asked about what to do with my shoulder since my old Rhemy used to give me cortisone injections but my GP was set on me having no more cortisone shots because of my osteoporosis.  I even had new xrays (right shoulder and hip and both knees) ahead of the appointment so we wouldn't waste any time for me having to get them done and have a follow-up appointment.  Well it really didn't matter.  We show up at the appointment and find a small waiting room, probably 10 chairs that were all full and there were about 4 people standing with no room left anywhere!  That was the first hint that this might not go well.

After a very very long wait I was finally called to go back to a room, after another long wait the doctor (Dr. M) finally showed up.  He comes in and introduces himself and then asks what I was there for.  I told him for my shoulder and he asked me where it hurt.  I showed him the general area and then he asked about my medical history.  I tell him about the EDS and the osteoporosis and that I have many dislocations because of the EDS.  He asks me what joints dislocate and this occurs:

Me - Well my shoulder has dislocated a few times
Dr. M - Documented? 
Me - No, I can get it back by myself.  I also dislocate my wrists quite frequently
Dr. M - Documented?
Me - No, I was taught how to put it back in
Dr. M - Anything else?
Me - I have dislocated my knee before but had surgery that helped it until I dislocated it last year
Dr. M - Documented?
Me - No, I have never had to go to the ER to get it put back in
Dr. M - Well, I will tell you now that you have never dislocated your wrist.  Dislocating your wrist is a major trauma and you would have ended up in the ER becasue of it.  You probably have not dislocated your knee either because you wouldn't be able to put it back in by yourself.  Things like fingers can dislocate and go back in easy (as he points to his finger to make sure I know what a finger is?)
Me - I know my knee has dislocated, I have had 2 surgeons tell me that they could dislocate my knee cap with just their pinkie fingers
Dr. M - Well that is not a knee dislocation, that is just your kneecap moving out of place

At that point I figured that we would just forget about the dislocation aspect and try to go and get on to what was going on with my shoulder.  He asks me where the shoulder hurts and I tell him (basically as if I had a bowl over my shoulder, that is where it hurts).  He then says, well the MRI you had done shows that you have Rotator Cuff Tendonitis.  It took me a minute to figure out what MRI he was talking about and then I realize that I had an MRI of my shoulder done at least 2 years ago when my neck and back were bothering me and they wanted to see if the shoulder played a part in this or not.  I tried to explain this to Dr. M but he wouldn't listen.  I told him that that MRI was done BEFORE I had the shoulder problems but he still said the tendonitis is what is causing my problems.  I asked what about the dislocations, the new pain, the weakness to the point that it feels like my shoulder is going to just fall out of the joint, all of that he says is the tendonitis. 

Around this point we got into a discussion about cortisone injections and he basically bashed my rheumy big time for ever giving me one!  He went on and on about how they were not needed and the only time that they should be done is when one is in a lot of pain and the give them a cortisone shot to dull the pain so that the person can do physiotherapy.  It was then that I mentioned that physio does not work for me and makes things very worse.  I then mentioned that fact that I have had physiotherapist (PTists) that have refused to treat me because I become worse instead of better.  He kinda almost laughed at that and said that obviously they didn't know what they were doing and asked where this had happened.  I told him that I had about 4 PTists in three different cities all working on different joints that said this.  He then goes in that the only thing that can be done about my shoulder is physio.  I asked what the other options where and he tells me there is nothing and that I need to strengthen the other tendons and muscles in my shoulder to make them compensate for the bad tendon.  I tell him that it is a very fine line in EDSers that you dont want to make your joints too strong because that can cause as many problems.  He completely shut down that idea and told me that EDS does not affect the muscles (it was around this time that mom 'checked out' and knew that this appt wasnt going to end well).  I disagreed with him and told him about the different talks at the confrence about muscles and physiotherapy and how these work (or dont work) in EDSers.  Get this he then tells me................... "Maybe you should go to Baltimore and see a doctor there".  I literally laughed and said if I had the money I would be on the first flight there.

We then get into this circular discussion about physio.  I tell him that I had a full assesment at the hospital physiotherapy department and was found that all my joints and muscles were at the strengths that they should be and any more muscle building could be detremental.  He than kinda smiled to himself again and basically insinuated that the hospital physiotherapy (the only one covered by OHIP) was worthless and meant nothing.  He told me he wanted me to get into a private PT if I wanted to get good care (oh and of course he had the perfect PTists in mind - made me think he got a kick back for referals).  I then tell him that the private PTist I have seen for years is actually the head of the hospital physio department.  He said that I needed a good private PTists that could work on strength building exercises and resistance exercises (which are the no-no types for EDSers).  Finally, to humour him, I said okay if I try the physio how long do I have to try it.  He then says you can not put an end time to physio and it completely depended on progress.  I said that that was not acceptable to me (and told him about my old OS and the knee physio debacle) and that I would try it only if it was for me to re-evaluate in 3 or 6 months.  All I got was 'It doesnt work that way".  I then said okay, if I try the physio and it doesnt work, then what is the next step.  Then he switches his mind and says that there is no point me trying it because I have already concluded that it wasn't going to work.  I said that I would do it all as long as I knew that if (when) it messed up the shoulder even more, that there was an option to go from there.

He then starts to tell me about this famous baseball player who was before my time (had to laugh at that as this doctor is only about 5 years older than I am) and his joint issues etc and goes on and on.  At the end all I said was "Yes, but he didn't have EDS".  I then flat out asked him how many EDSers he has treated and he tells me that he has treated 5!!  I looked at mom and laughed (he has only been out of med school for about a year and has only been in practice for about 9 months).  I asked him again if I do physio I wanted an 'end limit', either a time frame or a physio goal that once I hit and if it didn't work that there would be something to fall back on.  Again he said there was no point in it.  This is when I started to cry.  I then asked that shouldnt we at least get a current MRI and see if the tendonitis is still even there or if it has 'gone away' or progressed and for the first time he finally agreed with me!!  Mom then asked if there was a chance to get a cortisone shot for the pain  and he said he refuses because I should have never had the ones I had to begin with! He said that I was already at a higher risk for osteoarthritis in the joint because of the 4 shots and I laughed and said I already had osteoarthritis in most joints.  He then tells me that I do not have it in my shoulder (sorry I am going to beleive my rheumy who told me I absolutly had it) and he would prefer to wait for me to get it when I was old instead of in my 30s.  I was so frustrated at this point that I could barely talk.

This is when he switched to being a psychiatrist!  Asking me if I was seeing anyone for consuling and that I had a chronic condition and I should be talking about it to someone and it obviously upset me and asked if I got this upset often, to which I replied "Only when talking with some doctors" and here comes the gem........... "Well, maybe you should stop going to doctors"!!!!!!!!!!!!!  Then he said he would order a new MRI and told us that we could decide what we wanted to do and he left.  I am not sure what he meant by deciding what to do as the only option that he offered (physio) he completely took back and told me it was worthless!  At that point I got mad and looked to mom and asked her if she noticed anything strange about the appointment.  She said no and I asked "Shouldn't someone doing an evaluation on shoulder issues actually, you know, touch the shoulder???".  After a minute we looked out and he was long gone so we left.  (Note - It has been a few weeks now and we have come to the conclusion that he never even ordered the MRI!!)

But here is one of the more frustrating parts.  On the way home my mom admits that this is the doctor that my brother saw last month to do surgery.  I was pissed!!!  I had asked her constantly for the name of the doctor that he saw and she kept saying she didn't know.  I told her that I wanted to know because I didn't want to waste my time on a doctor that would treat a person so quickly with surgery for a problem that was completely and entirely self inflicted (long long story!).  And if I had of known that this was the doctor, I would have never agreed to getting a referal to him!  Then I got even madder at her telling her that she just wasted a few months of my time that could have been spent waiting for a doctor that was actually good.  It still pisses me off.  There is more to this little story but this entry has gone way too long already.  Sorry for the heavy text but there was a lot of disrespect in this appointment that I wanted to post.

Monday, April 2, 2012

Journey to Becoming a Zebra - The Facts

This list covers everything that has gone on since the day I got my Ehlers Danlos Syndrome diagnosed.  I am probably missing a bunch of things but these are what I have been able to remember just by memory.

  • 6 Orthopedic Surgeons
  • 5 Physiotherapists
  • 3 Rheumatologists
  • 3 Dentists (2 were Oral Surgeons)
  • 2 Pain Clinics
  • 2 Cardiologists (and one is also my internist and gastroenterologist)
  • 2 Neurologists
  • 1 Allergist
  • 1 Dermatologist
  • 1 Podiatrist
  • 1 Geneticist
  • 8 Echocardigrams
  • 8 MRI's (that I have remembered)
  • 5 Cortisone Injections (1 right knee, 4 right shoulder)
  • 4 Holter Monitors
  • 4 Dental Surgeries (1 widsom tooth extraction, 1 molar extraction & 2 fillings)
  • 3 Bone Scans
  • 3 Dexa Scans
  • 1 CT Scan (right knee)
  • 1 Joint Ultrasounds (right knee)
  • Numerous - > X-Rays, EKG's and Bloodwork
Medications Tried:
  • 8 Breakthrough Pain
  • 5 NSAIDS
  • 4 Off Label Uses
  • 3 Long Acting
  • 3 Anti-Depressants
  • 3 Beta Blockers
  • 3 Topical Pain Killers
  • 2 Migraine Prevention
  • 1 Stomach
  • 1 Osteoporosis
  • Numerous -> Vitamins and OTC (Over The Counter) Medications
  • Other non- EDS related medications (anti-biotics etc)
Joint Problems:
  • Dislocations - Knees (both), Wrists (both), Thumbs (both), Elbows (right) & Shoulder (right)
  • Tendonitis - Ankle (left), Knees (both), Wrists (both) & Shoulders (right)
  • Bursitits - Ankle (left) & Shoulder (right)
  • Osteoarthritis - Knee (right) & Shoulder (right) (confirmed)
  • Carpel Tunnel - Both Wrists
  • Degenerations - Shoulder, Neck & Back
  • Bone Spur - Neck
  • Disc Herniation - C5-ish
  • Stenosis - Cervical Region
  • Reverse Lordis - Lumbar Region
  • Ganglion Cyst - Ankle (left)
  • Physio - Ankle (left), Knees (both, pre & post-op), Wrists (both) & All Body Assesment
  • Bracing - Ankle (left), Knees (right), Wrists (both) & Thumb (both)
  • Ultrasound Therapy - Same as Physio
  • TENS Therapy - Same as Physio
  • Contrast Baths - Wrists (both) & Thumbs (both)
  • Accupuncture - Knee (right)
  • Accupressure
  • Massage Therapy
  • Hydrotherapy
  • Orthotics
'New' Conditions:
  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia
  • Depression
  • Anemia - Iron & B12
  • Severe Vitamin D Deficiency
  • Sinus Tachycardia / Possible Mitral Valve Prolapse
  • Local Anesthetic Allergy (and they do not work)
  • Sedation Does Not Take
  • Tylenol & Asprine Sensativity / Latex Sensativity
  • Severe Chronic Headaches
  • Fallen Arches / Flat Foot
  • Autonomic Dysfunction / POTS / Dysautonomia
  • Osteopenia / Osteoporosis
  • Probable Autoimmune Disorder
  • Gastroparesis / Gastritis / GERD & Bile Reflux
  • Osteoarthritis

Sunday, April 1, 2012

Journey to Becoming a Zebra - Part Three

This is going to be a very short entry (for once) because in reality most of the things that have happened since are in the blog or have had the results of them in the blog (or emails, private messages, facebook etc).  So basicaly I am just going to write down what happened immediately after the appointment and then what the next 6 months held 'life' wise and not medically wise.  To do medically wise I think it will be easiest to just make a post of the 'facts' that have been dealt with since the diagnosis.

The first days:
Thankfully I have amazing parents.  When I got the appointment to see the geneticist my dad drove 2.5 hours from 'hometown' to 'university-town' and then the day after we both drove to 'dr-town' for the appointment (mom couldn't come becasue she had to work and look after K), we had the appointment and then decided that I was going to go home for a few days while we figured it all out.  I was 99.9% sure that I was getting the EDS diagnosis but it still was a big adjustment.  I needed a few days before getting back to my real life. 

Life events:
I went back to 'university-town' a few days later and continued to work my ass of and am proud of the fact that I was able to get my Honours Bachelor of Science in Computer Science as well as a minor in Math.  I was (and am) so very happy that I was able to acheive that before everything started getting so bad.  And that challenging and hard of a degree probably actually attributed to the reason I went down hill so fast that last year. I got a summer job but I was unable to keep it as it was a lot of typing on very old computers (harder keys to push and a different layout to the one I was used to) and no chances of small breaks.  I was going to go back for one more year (as I had surgery scheduled for that november - which never happened but I won't go into that) but had my wisdom teeth out on the 3rd of September and go back to school on the 7th, I wasn't recovered, we were dealing with a lot of medications trying to do the pain management part and I ended up with a bad infection following the wisdom teeth extraction so by mid-october I knew that I just could no long do the school thing (plus the fact that most of my friends were gone by then so I was kinda alone).  I moved back into my parents house permanantly and have been lucky enough that my parents are perfectly happy with our strange little family dynamic (my parents, myself and my grandson) and it was a mutually pleasing aragement as I was there for my nephew.