Non Health Related Update

The biggest thing that has happened since my last point in January is that my nephew broke his arm. Ironically he broke it playing dodgeball at school. He plays dodgeball 4 times a week at karate! He had an above the elbow cast for four weeks then a short one to his elbow (but restricted angles above 180*) for three. During this time they had their big school trip doing so many things but thankfully it all went well and he didn't miss out on anything.

I have a tutoring job that is a long term 'job' now. The mom wants me to stay on through the summer and have him prepped for his next years curriculum. It works out great! The family is so great and down to earth(invite me to stay for supper three times now) and the kid is picking things up so much faster. There is a major difference between him when we started and now. Very rewarding!

Not a big deal but I got carded buying a lottery ticket! You have to be 18, I'm 32! And it wasn't a "everyone gets carded" type of place. When she looked at my ID she was taken aback and said "Oh, well don't you look young" lol

More has happened but as it is 4:30 am I should really attempt some sleep!

Massively behind! Update on the first half of 2014

Well at this point I can't remember exactly what happened or was discussed at the appointments but will do point from the basics. So far I have had the following appointments:

January 23rd - Family Doctor Appointment 

This appointments was to go over the CT scans I had done the end of December. Strangely my herniated / bulged discs and bone spur did not show up on the scans. My GP figures the majority of my neck issues are down to instability in the neck. Probably the quickest and easiest 'diagnosis' of CCI ever known! He also reviewed my CT scans and noted the 'nodule' on my thyroid and told him to remind me in six months. 

March 6th - Internist Appointment 

Not much to this appointment, wasn't made for anything specific just a check in.  I asked whether tethered cord or a lower spinal issue could be the answer to my sweating issues. She wasn't sure but wrote up the MRI request easily.  We also discussed a new medication that is out there that is a beta blocker and an alpha antagonist. Even though it's for high blood pressure (which I do NOT have) she thinks it could really help that balance between lower pulse enough without lowering BP too much. I did ask her about getting testing to see what vitamins and minerals  I am deficient in and if my body is absorbing enough. She told me to see my GP for that.

March 20st - MRI of Upper Spine

March 21st - MRI of Lower Spine

April 10th - Bloodwork

May 5th - Eye Test Recheck 

I had had a full exam of my eyes in November but certain numbers were to high so she was worried about glaucoma (my dad has it) so wanted me to come back in 6 months to have the field of vision test reordered.  Thankfully it was a different tech who didn't move the chin cup without telling me!mshe then had me wait and my doctor called me in to her office for a quick look at something and I ended up getting another full eye exam done! I was at the office for almost an hour! Good news is she thinks my pressures are okay, just something to keep and eye on. Bad news BOTH my eyes had gotten weaker and both showed a 0.5 difference! So I need to get new glasses again (thankfully they will be covered as it's such a drastic difference in a short time from)

May 6th - Family Doctor Appointment 

Not much occurred at this appointment. As almost six months had gone by my doctor ordered the thyroid ultrasound suggested in December. I also asked him to order me a new DEXA (bone density) scan as I hadn't been checked since I started taking medication for the osteoporosis.  We discussed the fact that my headaches are coming back again and he asked me to look into Botox for migraines.  

May 16th - Thyroid Ultrasound

Got in pretty quickly for the scan so I was happy. Got there and prepped and the tech started the scan. She did a LOT of clicking and measuring. One side of my neck took twice as long as the other side. What really scared me though was at the end she told me to stay as I was and she went over and pulled up my CT scan and looked at them.  Looked is too weak of a word, she studied them, spent at least five minutes viewing the scan then abruptly said she was done. Still haven't gotten the report as I had to wait for my DEXA scan before doing a follow up appointment. Interesting thing happened at the hospital. We believe there was a small fire somewhere. They locked all the doors, nurses were in every entrance way, the stores closed down and the alarms just kept going. It was really strange!

June 11th - DEXA scan 

It took a long time but I finally got in (longest wait for a test that I have ever had!). Of course things can't be easy and the hospitals computer system decided to die so everything was done by hand! The admission guy didn't even know what anDEXA scan was! Finally got back to the next waiting room and filled out my forms.  As the tech was reviewing them with me she asked if I had a list of my medications she could copy (I wrote them out by hand) and I said no, then she started reading all my information and looked right at me and said "You need to get a medic alert bracelet now".  She even 'thanked' me because I was obviously proactive in my own health care and that most people couldn't even tell you what meds they are taking. I taught her all about EDS and how my premature birth was blamed when it was all EDS she asked how early I was and when I told her 29 weeks and 2.5lbs she blurts out "Holy Shit!) and that was  a long time ago when most didn't survive. She was very interested in EDS so I educated her and answered all her questions. She also commented how 'calm' I seemed about my crappy health so I gave her I can have EDS and be bitter or I can have EDS and find the silver linings, either way I still have EDS. It was a very good appointment and hopefully if a patient comes in and shows signs of hypermobility she will remember me :)

December 19th - CT Scan

After last appointment I figured it would be in to January before I got a date for my CT Scan but I was wrong! I got a call on the tuesday asking if thursday would be okay for an appointment.  Of course I said yes as I was glad that I could get it over with before the holidays.  I got nervous when she told me I wasn't allowed to have anything to ear for two hours before the test as I knew this meant that it would be done with contrast.  I have only every had one other CT scan before and it was on my knee and no contrast was used.  I don't like not knowing what is going on!

Mom had things to do that day with it being so close to Christmas so it was agreed that my Dad would take me in as we didn't know how I would be after or if I would be okay to drive (we err on the side of caution with that, if I am having basically any testing done someone comes with me).  We got there and waited and waited then got called to another room and waited some more.  Finally the nurse comes to get me to start the IV.  I had left my Dad with my iPod and he was trying to play a game.  I gave the nurse the run down of EDS and what was going on.  She tells me that they have to do the IV in the right arm and I told her that was okay, just do it in my hand.  She was just about ready to start and Dad pops up over the divider asking how to turn off the iPod, she laughed at that.  She inserted the IV needle in a way that has never been done on my before.  She had my arm on the armrest and my hand hanging down over the end at a 90* angle then inserted the needle up and in almost near my wrist.  Then she tapes it up and tells me to wait some more.  Of course I am terrified to move in case it comes out and I don't want to look at it so it felt like we were waiting for a long time!

I get called back and they tell me they are going to do some scans without contrast and then someone would come in and insert the contrast and they would do some more scans.  They told me to not worry but when they insert the contrast it will feel as if I peed my pants!  I wasn't to sure about that and was glad I had gone to the bathroom first!  They told me that no one ever has peed themselves it's just what it feels like.  So I got up on the bed, had to ask for a pillow to put under my knees as they don't really do straight and got comfy.  They did some of the scans then I felt someone beside me grabbing my hand and could instantly feel the contrast.  It felt so weird!  They did a few more scans and I was out.  They removed my IV and told me I had to wait there for 10 minutes before I went home.

It was another day of feeling crappy so I just went to bed to lie down for a while.  That was weeks ago but I still have the bruise! I look really festive in Christmas pictures with my nice big green bruise covering most of my hand!  I haven't been back to get the results yet but hopefully I can get in soon and we can figure out something to do about my neck!!

December 11th - GP Visit

Mainly this appointment was to get a few refils on medications and to tell him about my neck and get him to order some tests.  Because of the last appointment I had my Mom decided to go with me as backup.  I got me refills with no problems and then told him about my optomotrists appointment last month.  How Dr. D. wanted me to have a CT Scan to check out the right eye socket as I have been having weird feelings in the area.  

He looked up the old bone scan report to read it through again and when he came to one part where it showed degeneration in the joint he just laughed and said "She has EDS of course there is degeneration in the joints, that's what it is!"  Mom and I just looked at each othere and I though that maybe he is actually starting to get it! My GP wasn't sure what to do with that but just grinned and said "I know what will come back but we will order it anyways" so he filled out the forms to get my head and eye scanned. 

I then told him about my neck and how it was really bothering me.  He didn't seem to really want to do anything but then my mom asks if they could not just scan my neck while they were doing the CT to check for problems.  He agreed to that and said he wasn't sure they would do it but that he would request it.  Before having the scan though I had to get bloodwork done and since it was about another few weeks until I had my thyroid tested again he just lumped it all in together for me.

Mom then asked about how often I should be having bone scans and went on to explain my old Rheumy's therory of getting them done every other year to watch for problems.  My GP agreed except said we dont want too much radiation as it could cause more problems but that he agrees that it should be repeated every 2 or 3 years (3 if no problems come up, 2 if I have a bad injury or something seems 'off').

As we are leaving the receptionist suggests that I go get blood work done now as the lab was still open and she couldn't process the CT request until she had the results so mom and I stopped at the clinic on the way home.   Thankfully my girl was there and just laughed when she saw me.  Like usually she got it in using 'our' way of a butterfly between my knuckles and remarked that one of us was getting better at blood draws.  I mentioned this to mom on the way home and she says she thinks its because both me and my blood taker are very comfortable together and that there was no more stress or worry on either our sides anymore.  I know she won't try digging and will get it or pull out and she has learned where the best place for geting blood is.  It's a win-win on both sides.

Of course I came home and crawled into bed.  However I forgot the crucial step of having something sugary to drink and felt horrible when I woke up.  Took a few days to get over that as since I didn't know I was getting blood drawn I didn't load up on water before the test and then didn't get something in me when I got home.  I will NOT make that mistake again!

Long overdue!!

Wow! It's been so long since I updated! Seems like so much has happened and gone on yet nothing has happened or gone on. Do you know what I mean? I have had three different doctor's appointments (and a few small doctor's office visits). I was going to include all of them in this one post but then it would be way too long so I will just link up the entries and post the appointments on the day that they happened.  So here they are:

August 22nd - Appointment with my Internist / GI / Cardio

October 28th - Appointment with my GP

November 4th - Appointment with Optometrist

I promise I will update sooner rather than later and do a general update not tied to doctor appointments!

November 4th - Optomitrist Appointment

It has been three years since my last appointment and getting glasses and I knew that I was way overdue for testing.  Even with my glasses on I have trouble seeing things (mainly the guide on the TV) even though my close vision and driving seemed fine.  What a hassle it was though!  With ODSP I am covered for eye exams when I bring my medical card, however I had already handed it in to my pharmacist so the 'eye office' had to call the pharmacy and have them send a faxed copy of it for them.  Thankfully my pharmacy really knows me well so it was sent almost instantly.

I did the exam and gave the doctor a brief recap of EDS and eyes (she was the only doctor who knew what EDS was before seeing me!).  She said that she really didn't like my pressure readings (one was 23.75 the other 24) and wanted to get me some other tests diagnosed and asked if EDS had any bearings on glaucoma.  I told her that I had read it could be related and would look into it and then mentioned that my dad has glaucoma.  When I said that she called the front desk and had them get other tests set up for me to do that day :(

We did all the tests and both eyes had deteriorated.  She said it was kind of odd as generally she only sees that happen in the teenage years and by my age usually the readings don't change that drastically.  Both eyes need the prescriptions to increase a full level (so four quarter levels!).  She then sounded shocked that she could see everything in my eyes and didn't even need to dilate my pupils.  That that was also something that generally only happened in people much younger than me.  She said I had very large pupils and that is why I have so many problems with sunlight.  She told me to get some really good sun glasses, I might have to find out how I can go about getting prescription sunglasses if I also need everyday glasses as well.  I don't know what is covered or what I can get covered.

Good news - My eyes are pretty much the ONLY part of my body that is not being affected by my EDS!  Yay! I have no signs of any of the things that can go wrong which is great to hear!!

I then had to go do a field of vision test which was horrible!  The eye tech would have my chin in the cup thing and she would adjust it without warning! My neck hasn't been the same since! (Seriously it was / is quite bad :( ).  Apparently I tested "borderline" on that test as well so I have to go back in 6 months.

Then at the desk getting everything figured out they tell me that the test I had just done was going to cost me $40 and ODSP didn't cover it.  I asked if my form for OHIP coverage would cover it and she said yes but they had no such form!  I told them I had it filled in and brought it in a few years ago (they last 5 years) and they said that the had no way to do it.  She asked who did it and said she would call the office, I tell her it was years ago and they had changed filing (paper to electronic) and not sure if it would still be there - their response? "If it was filled out then it has to be in your chart" I didn't reply asking why they didn't keep the old one in my chart.  So they called the doctor and he said he would do the paper work and send it in.

Since Then - I got a call the next day from the 'eye office' and they told me that my GP had sent the form so it was covered and oh yeah, we found your old form, then hastily told me it was expired (not so sure of that myself!).  So I go again in 6 months to see if I have glaucoma :(

October 28th - GP Appointment

This was a very very bad appointment.  About a week and a half before this appointment I had to go to the office and get a few (10) pills of my breakthrough medication.  I did this as I wanted to get my doctor to figure out a new breakthrough medication to help with the pain so I didn't want to get too many of them.

So I got to my appointment with a few things I wanted to go over, it was an appointment for a thyroid check but for me it was more to get him to change things up for my pain levels.  I get in and he was happy about my thyroid levels, that they have stabilized and that the dose I am on seems to be the dose that I will be staying on.  He asked if I notice and differences and I told him that yes it was helping.  I needed a few medications refilled so he did those and then we started in on the pain issue.

I told him that I needed to change my medications and so he asked what I wanted for long term and I told him what we normally switch to and he was fine writing that one up.  I asked him if we could try the same total daily dose (90mg) and instead of taking it twice a day (45mg) could I take it every 8 hours (30mg) as the long acting meds don't seem to be lasting the full 12 hours.  He did not want to do this because he felt that just changing the medication was enough of a change to my body and that we could revisit that idea when I had my next appointment (I see him every 3 months unless something else pops up).  I don't agree but I can see his logic so I will just wait the 3 months and see how it goes.

He then notices one of the medications that I am on and wondered why I was on such a low dose!  I told him I had been higher with my old doctor but that the dose I was on was enough to stop the nerve pain in my shoulder.  My GP then said he wanted to triple the dose and see if it helped my overall pain levels.  I told him I was hesitant about it as quite a few doctor's had prescribed it years ago and it never touched my overall pain and that I really didn't want to increase it.  So he told me that he was going to write that I could increase it to triple my dose but that it was up to me (Such a weird statement from him).  I really don't want to increase it as this is the medication that caused me to gain almost 15lbs when I started taking it!!  I'm trying to lose weight not gain it!  Also made me mad because the last time we discussed my headaches and a new medication I wanted to try he said I couldn't strictly because of this medication.  I was honestly thinking about discontinuing it and instead he wants me to triple it!

Then I say that I need something new for breakthrough.  He asks what I used to use and when I told him he just said 'I am not prescribing' and how it isn't used in practice anymore and how 'dirty' it is.  So I asked him what I could use instead.  He then proceeds to tell me that I shouldn't need anything for breakthrough with the other medication changes!  I was so shocked that I couldn't speak then started almost crying. I told him that wouldn't work, that if I injured myself I needed to have something extra (I had just dislocated my wrist the night before and it was wrapped up so I used that as an example).  He finally said well I don't know what to give you so I want you to find what would work best then I will write it for you (WHAT!?!?!).  I then asked if I could get some of the old stuff as even though it didn't work well it at least did help more than just plain advil (which I can't take two days in a row or I dislocate like crazy).  He then hands me a sheet and wrote it out for 40 pills!  I questioned that and he tells me that the last prescription he had written was only for 10 and this was quadruple the amount.  I said that the 10 pills where only to cover a 10 day time period as I had wanted him to change it.  He fixed it up then told me that all he wants is to get my pain controlled (funny way of showing it).  I left the appointment without making my follow-up appointment because I was so upset and mad (and crying because of how mad and upset I was).

I went home and got mad.  I had asked my mom to go to the appointment with me as he tends to take me more seriously when she is with me but she didn't want to go so I didn't push it.  I came home and I think she felt bad that she didn't go and said we would go back.  Because that would look so good and help me with credibility.  I just told her I would figure it out.

Since Then:  I love my pharmacist!  Not only did she completely call him out she worked so hard for me.  She asked me why he wouldn't just give me the old med and I told her why and she just looked at me for a minute and said that the fact that no one used it anymore was a surprise to her as she filled it quite often and had no idea as to why he would call it a 'dirty' drug to someone who used it responsibly!  I told her how he wanted me to find a new medication to use and she remarks "So he will write what you want - as long as he 'likes' it?" I had to laugh at that.  She was on the same wavelength as I was and we both agreed what was the best thing to do.  It was late in the day when I talked to her so the doctor wasn't there so she said she would write a note for the pharmacist in the next day so when the office called they would know what was going on.  I called the doctor's office the next day and after back and forth calling between me, the office and the pharmacy we finally got it figured out and called in.  Can you believe that the doctor's office wanted to even know what dose I should get? Like they couldn't figure it out themselves?!?  When I picked it up that night I noticed the note that the other pharmacist wrote and it had on it "Doctor doesn't "like" -(other drug)- doesn't know what to give" then something along the line that me and the pharmacist brainstormed and came up with the answer.

It was a very easy answer and I really really have to question why the doctor couldn't figure it out.  The one set of meds was "Drug X Contin" for long term and "Drug X" for breakthrough.  So now that I was on "Drug Z Contin" didn't it make sense for me to just get "Drug Z" for breakthrough?

The new breakthrough is helping, was even able to get a way with a half dose a few times before the pain got too bad and it seems to last 2-3 hours (supposed to last 4-6).  Unfortunately the long term medication hasn't seemed to really help me.  However, I dislocated my shoulder the night I started it as well as made adjustments to my bed (I have a water bed and we had just added some more water and 'burped' it the same day).