***** I am going to apologize in advance because this is going to end up being a LONG post. There were just so much going on and so many emotions and I am still trying to get over the 'trauma' (my mom's words that the nurses told her) that it still feels kinda all jumbled up and still trying to make sense of some of it.*****
That was one of the worst days of my life, and I am not being overdramatic in any way!!! After being reassured by everyone (well except for one person who was great to tell me that her mom would rather having her hip broke than having a scope again!) that it was no big deal, I wouldnt remember anything and would be perfectly fine afterward. Well surprise surprise I was the "1 in 100" as my doctor would later tell me. Well I better start at the beginning so this actually makes sense.
Background - As I wrote before, I had a barium swallow done before Christmas that showed that there was 'something' in my stomach that they could not identify. Because of this it was highly recommended that I have a gastroscopy to see if those were left over food particles or some type of polyp. When my GP read this, he told us that I should ask my internist / cardiologist (Dr. C) about it because she is also a gastroenterologist (which was confusing but I wont go into it here). When I went to see her next she quickly dismissed the report and said that I had gastroparesis (still can't remember how to spell it!) which fit wiht many of my issues and said the swallowing problems were probable from my 'extreme acid reflux'. However, after a bit of discussion she agreed to do the gastroscopy and we scheduled it. There were a few extra notes that she wanted - like we decided for me to NOT take my beta blocker the night before, I was not to have solids for supper or any time after (you can usually eat a normal supper, then liquids til midnight then nothing else - I had liquids from supper to midnight), obviously the no locals and that I was to 'get a good nurse' for IV.
Night Before - I slept in that day and then got up later and had a treat (figured I wouldnt want anything for a few days so got in one of my favourite treats lol) around 2ish. Wasn't too hungry so the next thing I had was some beef broth around 6ish. Had some watermelon Jello (amazing!!! If you like watermelon you have to try this!) around 8 and just flavoured water for the rest of the night. Went to bed 'early' around 11 so I could get some decent sleep, which of course did not happen! I just could not get to sleep and didnt manage to fall asleep until close to 2am! Then I woke up from about 4:30 til 5:15 before going back to sleep and finally waking up at 7am (alarm was set for 7:45 but I couldnt get back to sleep). I had everything I needed packed and clothes laid out from the night before so just played on my laptop until it was time to go.
At the Hospital (Pre-scope area) - I was supposed to be at the hospital for 8:45 so we left around 8:10 and ended up getting there at 8:30ish. Went in and got registered and were directed up to the third floor to the day surgery unit. Registered there and was eventually taken back to the endoscope unit and given a cubicle and told to get changed (I was disappointed that I was not allowed to keep my PJ pants on, had to get in a gown, could keep underwear on and my socks lol). Once I was dressed and settled in my bed a nurse (call her Prep Nurse) came in and went over my forms and checked about all my meds and conditions and stuff like that. She then took my vitals but kept my BP cuff on as they keep it on during the procedure. She got everything out for the IV and mentioned that they were going to keep the saline going a bit faster than normal because Dr. C suggested it (I assume because I had no liquids which could lead to autonomic issues). I then asked to go to the bathroom and went and the BP cuff moved around so I told Prep Nurse this once back in bed and she said it didn't matter (???).
I told Prep Nurse that I was a hard IV start and she just kinda looked at me. I told her where they usually get bloodwork and IV's so she said she would try that spot first. As she is getting prepped another nurse called through the curtain that they had a student on the ward to learn about IV's and that maybe she could start on me. Prep Nurse immediatly said that was not a good idea as I was not an easy patient and she wasn't even sure she could get it. The other nurse must of thought she was being funny because she then goes that maybe the student should come in and watch 'the amazing job' that Prep Nurse does. Prep Nurse kept saying no that it wasn't a good idea and the other nurse finally gave up. Prep Nurse apologized as she had to keep 'flicking' (tortureing was her word actually) the area to try and get the vein to come up and thought she was pretty confident that she could get this start. I closed my eyes, clenched my fist (thats what I was told) and tried my best to relax. After some digging I hear her move and ask if it is in. She tells me she HAD it, notice she said HAD and not have. I relax and could see she was visably frustrated / upset and she kept apologizing for hurting me. She then said that she would not try again and that she was going to get some one of the nurses from the back to come out and do it. So Prep Nurse left and a few minutes later and Unit Nurse came to look at me.
Unit Nurse kept reassuring me that if she didn't feel confident that she would not even attempt the IV start (I didn't ask what would happen after that). After a bit of her looking around and what not she said she thought she saw a good vein. As I noticed her feeling around my wrist / thumb area I got real nervous and asked if there wasn't somewhere else and she finally just said that if I was that nervous about it she wasnt going to attempt it. That is when I told her that while at university I had a blood draw from there and the nurse hit the nerve and I was in a splint for a few weeks. Unit Nurse than assured me that she would not try there. She then was confident that she found a vein in my elbow area and asked if it was okay for her to go there. I said yes (what else was I going to say???) and after some poking and digging around she got the IV in. Because it was such a hard start she taped the crap out of it so it wouldn't move. Unit Nurse then proceeds to tell me that I was over the worst of it now. I said as long as I am knocked out during the procedure I will be fine. Unit Nurse then proceeds to tell me that they don't knock you out persay but sedate you and give you medications so that you don't remember anything. Unit Nurse then proceds to tell me that I am very lucky because they actually had an anesthesiologist on the floor that day and he gives the good meds (Propofol) which are even better than the sedations and that I wont rememer a thing. She tells me that she has had two scopes and dosen't remember a thing. My next nurse (Jody) then came and introduced herself to mom and I and said that they were ready for me and she was going to take me to the room. I said good bye to mom, Prep Nurse told her where she could wait and we were off.
Procedure Room (Pre-Scope) - The wheel me into this small room and I see that Dr. C is in there. I mention to Jody that my BP cuff had come off and she thanked me for telling her and as they had some more prep stuff to do she just took it off for the moment while everything else was done. I look over to the desk area and see that Dr. C is talking to a man in blue scrubs that I assume was the anesthesiologist and they were talking about the cases that they were doing that day. Jody gets me ready by putting electrodes on my chest and getting me to sign another form (to approve the dilation and biopsys) and Dr. C asks if I was noticing any differences with the new beta blockers. I told her we could really see a difference which she was surprised about. I then mention to her that I forgot to mention to her that I have blood in my stools and wondered if she could see anything that day. She tells me that if the blood was from the stomach that I wouldn't be able to see anything and that we would probably have to do a colonoscopy in the future. Jody then gets the BP cuff back on, puts a nasal cannula with oxygen on, has me turn on my side and get positioned where I needed to go. She then proceeds to tell me that she is going to spray the back of my throat to which I quickly replied "NO" and she nodded and thanked for reminding her. I tell her than what my dentist usually does (removes all locals before I get in the OR) Dr. C tells someone (the nurse taking report I assume) that she is going to give 4mg of versed and 75mg of Fentanyl and asks the other nurse to keep an close eye on the IV because she is concerned that amout going in through a small needle could make the liquid pour out under the skin. Jody puts on the mouth guard and straps it on while this is happening. I see Dr. C coming close with the scope and then....
During Scope - Yes I said during the scope. I didnt wake up for the actually swallowing portion but I did wake up in time to feel the scope going down my throat. I could feel it moving around and hear Dr. C saying what she was looking at and then she started to do the dilation. It was during this time that I completely panicked. The nurses had to hold me down and one nurse kept telling me to relax (!!!) and the other kept telling me to breath through my nose. Once the dilation was done I felt her bring the scope out and tell me that I was okay and it was over. I dont remember the next few seconds (just having the electrodes and mouth guard removed) but then I remember Jody moving me to the recovery bays.
Post-Scope Recovery Bay - I didnt even realize I was crying but Jody kept telling me it was okay and it was all over. She kept hitting the button to take my BP quite often and I was never left in the bay without a nurse (the other bays I could see nurses coming and going every like 5 minutes). Jody handed me kleenex and kept trying to get me to turn over on my side but I wanted on my back. She told me I would have to burp but I guess I was crying too much for that sensation. A new nurse, Recovery Nurse, came in at this point and Jody went back to the procedure rooms I guess. Recovery Nurse then said that the IV was very agitated so she quickly removed it thankfully. Dr. C came in and asked if I was okay. I don't quite remember what I said (apparently I was in shock) but I told her I was awake, it hurt badly and that I was told the anesthesiologist was going to give me medications. She looked confused and told me that she never told me that and it was never part of the plan. That upset me even more! She kept telling me it only took two minutes for the entire thing and it was all over and done. Then she comes out with "When we do the colonoscopy we will do it under a general anesthetic"!! I couldn't believe her!! Like that was my biggest concern at the moment and like I would agree to any type of procedure after what I just went through! She mentioned that she thought that my tachycardia is causing my problems. She thinks that the heart spasming is causing the esophagus to spasm (or something like that, not 100% sure). She then left and I just kept repeating that it hurt and I felt the entire thing and I just wanted to go home. Someone went and got my mom at that point and she walked in to me crying and so upset and assumed that they had mistakenly given me the local anesthetic and said she couldnt figure out why I was so upset. She said to the me then "Well we will just have to see what happens", Recovery Nurse kinda said something along the lines of it was done and that is when I told mom that I was awake through the entire thing and that I just wanted to go home. That was my only thing - I wanted to leave that place and just go home! Unit Nurse than comes in the room and apparently looked very upset and kept apologizing. Apparently she got sidetracked and never told Dr. C that she said she would get the anesthesiologist to give the propofol. She felt horrible about it and went to Dr. C to tell her what had happened. I think every nurse on the unit came in and out of the room at some point to apologize to mom (and me but I wouldnt look at them) and check on me. Dr C then came back in and talked to mom for a bit and just kept telling me it was only two minutes (like that mattered) and that she gave me the same dosages of meds as they normally do for the colonoscopy and that the man in the bay beside me was still sleeping for him and he went before me. She just said that I unfortunatly was that 1 in 100 person who didn't react properly to the medications. She didn't know what else to say but to apologize again and that she would leave it up to us to call and make any other appointments and would understand if I decided not to see her again (which is so helpful as she is not only my gastro doc but my internist and my cardiologist as well!). After she left Unit Nurse came in once again to apologise and mom asked if they at least found anything. Unit Nurse looked it up and said they found out that I had gastritis and some sort of reflux disease similar to GERD (mom cant remember what she said) and that no strictures were found and that they did do the dilation. She didn't mention anything about a biopsy so we aren't sure about that. After I calmed down enough and my vitals were normal the nurse told mom that she could take me home. They gave us some discharge papers (food and drink as tolerated) and sheets about gastritis and GERD and left. I got dressed quickly, and still crying, we left the hospital.
Immediatly Post - Scope at home - Mom asked if I wanted to get an ice cap on the way home but I didnt want anything, just wanted to get home. We drove home, me still upset and crying and asking questions and telling her (again) what happened. We got home and mom just told me to take a pain killer and go lie down for a while. I had some chocolate milk to take my morning meds (as I had nothing on my stomach and thought that might be bad with my meds) and then wanted soemthing more to drink so went upstairs and could hear mom talking to my dad in her bedroom (so I couldnt hear) about how things went and how I was so upset. I got some flavoured water (carbonated felt good) and went back to bed to try and sleep for a bit and did eventually fall asleep.
That Afternoon & Night - I got up shortly after Kyler got home and curled up on the couch. I showed him my IV wounds (hand swelled up and brusied, elbow did surprisingly nothing, couldnt even see the entry point!) and he asked what they did and I told him that basically they put a balloon in my throat and blew it up to try and make me be able to swallow better. He then asked 'What kind of doctors are they? That is so stupid!" which made me laugh. Mom had to go out and get a few things so I went with her. We didn't know how sore my throat would be so didn't get too much stuff but after having it done I knew it was going to hurt. Went out and got some popsicles and yogurt and went home. I had spiral macaroni and cheese (they are thinner and smaller) for supper and then some watermelon jello after that. When we sat down to watch American Idol mom was surprised and told me to look at my arm. I asked at what and she said exactly. I had no reaction at all to the tape from the IV!! No read marks, no rash, no tearing nothing! Something that my body produced when I panicked counteracted what every produces the rash apparently. I was so tired that mom 'sent' me to bed at 10pm.
Following Day - I slept was awake and slept and was awake and slept and got up around 1pm. I felt like I had been hit by a truck!!! Everything hurt so bad! My throat hurt at the top (like when you get a sore throat) and further down where the did the dilation; my right arm hurt from where I was tensed up because of the IV and just everything hurt. I came upstairs and took some pain meds and told mom and she said it was no wonder I hurt after the trauma I had been through. All afternoon I kept yawning and was just exhausted. At around 4 mom suggested I go down to bed until supper as I looked so tired. I said that I didn't know why I was so tired and she said it was from all the stress. I had spiral mac and cheese for supper again and sucked on some of the milk chocolate werthers and caramelts (they are so creamy it felt nice to swallow it).
As of now (Friday night) I still can not eat solids. I have had mac and cheese every night for supper, sticking with lots of popsicles, jello and werthers. Mom is concerned that it's not the pain that is keeping me from eating more solid types of food but that I am scared to. I dont really know which it is. Just thinking about it still upsets me and I am actually scared and worried about how I am going to react to my dentist appointment next week. Mom keeps telling me that we knew it was going to take me longer than normal to heal from the procedure becasue of the EDS and then now with the physical and emotional trauma it is going to take even longer. She wants me to make an appointment with my GP about getting it in my file that any procedure has to be done under a general anesthetic since locals dont work and apparently sedation doesnt work. She also wants me to get a medic alert bracelet saying that becasue if I was ever in an accident or something and they had to do anything, the sedation wouldnt take and just cause more problems. I will have to bring it up to my doctor as this is now a few items that she wants me to get a medic aleart bracelet becasue of and this one actually does scare me that if I dislocate something badly and they sedate me thinking I wont feel or remember anyhting when actually I will feel and remember it all!
Friday, January 27, 2012
Thursday, January 19, 2012
Scents - Contrasting experiences
I have always been 'sensitive' to scents but lately, within this last year, has gotten a LOT worse. I can no longer go down the laundry dergent aisle, mom has to stick to one vanilla scented fabric softner, and any air sprays really affect me. It used to just be that I would get a little stuffed up and my eyes would start to water but once I was away from the scent, after about a minute or so, I would be fine and back to normal. No more. A lot of scents still do give the itchy watery eyes and stuffed up nose but I know get more intense issues. With some certain scents (such as my brothers cologne and his girlfriends perfume) though, I get a lot worse. Even with only the slightest scent of it my lungs start burning and I get a bad headache. The headache I can ignore but the intense burning in my lungs last for hours after smelling it. They have repeatidly come over to the house stating that they are not wearing anything yet are in jeans they wore the night before, or their coats are drenched in it or her perfume. Even just when J (her daughter) comes to the house, I have to stay away from her because she smells so much like it. When K comes home from a visit at their house he has to go in and change his clothes. Here is where the differences come in. First I will explain how it 'works' at our house:
They are not to wear cologne or perfume if they are coming over to stay at the house, but the scent lingers on them. However, at least once or twice a week my brother just 'stops in' (usually to borrow money or food) and will walk in the house and all around the house. But it's not just about his cologne though. Dad complains because he can no longer use his body wash he likes (I have asked him to just shut the bathroom door and open the window a bit for a while after a shower but apparently he doesnt like that option). Mom just rolls her eyes when I come up and ask what smells (carpet cleaner or cleaning products) and just tells me many times that it can't be controlled. It's not so bad when it is just the itchy, watery eyes but the burning lungs really hurt and makes me cough badly and I have actually put a rib out one night. Strangely we have one candle (a vanilla derivative scent) that does not bother me at all, so mom figures that the perfect 'fix' for the bad scents is to light the candle near me so that I can't smell the 'bad' scent.
Because of all this I was dreading Christmas this year. There were going to be 11 people in a small area for over 24 hours. I repeatidly asked my mom to ask my grandma to tell everyone to not wear any scents while we were at Christmas. Mom felt that overstepped things as we were going to be a 'guest' in the house and we couldn't dictate what was going to happen. I didn't have high hopes about this but was pleasantly surprised. This was actually a positive reaction. After weeks of mom saying she kept 'forgetting' to mention it to my grandma, my aunt called the day before we were going up to firm up plans. While she was on the phone I made sure to 'remind' mom about it so mom vaguely mentioned it. My aunt said she would pass it on.
We get up there the next day and notice that a few windows were open. She said that since both of them smoke in the house, she wanted to spray air freshener around so did that the first thing in the morning to hope that it was out of the house before we got there. I could smell nothing in the house. The next day when everyone got there, no one was wearing anything, which usually someone is wearing something. When we opened gifts the next day, nan had made me a 'goody' bag with different lotions and stuff and said she didn't know about the scent issues when she got the stuff but she had looked through all of it and pulled out the most mild scents to give to me. They were all nice and mild and there was only one item I wouldn't be able to use but I gave it to my cousin becasue she kid. With everyone running around the house I kept getting a whiff of something but as soon as we figured out what it was (it was a diffuser that was empty that she figured had no scent left so hadn't moved) she took it in to her room so it wasn't near me. Even more amazing is when my cousin's husband went to the bathroom and sprayed air freshener. As soon as my aunt smelled it she went in the bathroom to open the window and shut the door for a while and then mentioned to him that I couldn't tolerate it and he felt bad. All in all it was a lot nicer up there than when we have 'company' here.
Just amazing how much difference it can make when someone puts a little effort and a little respect into things that really don't matter to most people, but can really affect others.
They are not to wear cologne or perfume if they are coming over to stay at the house, but the scent lingers on them. However, at least once or twice a week my brother just 'stops in' (usually to borrow money or food) and will walk in the house and all around the house. But it's not just about his cologne though. Dad complains because he can no longer use his body wash he likes (I have asked him to just shut the bathroom door and open the window a bit for a while after a shower but apparently he doesnt like that option). Mom just rolls her eyes when I come up and ask what smells (carpet cleaner or cleaning products) and just tells me many times that it can't be controlled. It's not so bad when it is just the itchy, watery eyes but the burning lungs really hurt and makes me cough badly and I have actually put a rib out one night. Strangely we have one candle (a vanilla derivative scent) that does not bother me at all, so mom figures that the perfect 'fix' for the bad scents is to light the candle near me so that I can't smell the 'bad' scent.
Because of all this I was dreading Christmas this year. There were going to be 11 people in a small area for over 24 hours. I repeatidly asked my mom to ask my grandma to tell everyone to not wear any scents while we were at Christmas. Mom felt that overstepped things as we were going to be a 'guest' in the house and we couldn't dictate what was going to happen. I didn't have high hopes about this but was pleasantly surprised. This was actually a positive reaction. After weeks of mom saying she kept 'forgetting' to mention it to my grandma, my aunt called the day before we were going up to firm up plans. While she was on the phone I made sure to 'remind' mom about it so mom vaguely mentioned it. My aunt said she would pass it on.
We get up there the next day and notice that a few windows were open. She said that since both of them smoke in the house, she wanted to spray air freshener around so did that the first thing in the morning to hope that it was out of the house before we got there. I could smell nothing in the house. The next day when everyone got there, no one was wearing anything, which usually someone is wearing something. When we opened gifts the next day, nan had made me a 'goody' bag with different lotions and stuff and said she didn't know about the scent issues when she got the stuff but she had looked through all of it and pulled out the most mild scents to give to me. They were all nice and mild and there was only one item I wouldn't be able to use but I gave it to my cousin becasue she kid. With everyone running around the house I kept getting a whiff of something but as soon as we figured out what it was (it was a diffuser that was empty that she figured had no scent left so hadn't moved) she took it in to her room so it wasn't near me. Even more amazing is when my cousin's husband went to the bathroom and sprayed air freshener. As soon as my aunt smelled it she went in the bathroom to open the window and shut the door for a while and then mentioned to him that I couldn't tolerate it and he felt bad. All in all it was a lot nicer up there than when we have 'company' here.
Just amazing how much difference it can make when someone puts a little effort and a little respect into things that really don't matter to most people, but can really affect others.
Wednesday, January 11, 2012
Rheumy appointment
This was the first doctor's appointment that went horribly wrong that I did not cry during or after, walked out of the office and actually laughed at the doctor at one point. We actually went out and did some shopping after this appointment and laughed when we told my dad, been using his lines ever since actually. The saddest part of all of it was that he was a rheumatologist who actually thought he knew what EDS was!!! So here we go....
We got in and the receptionist goes over everything and asks for the names of medications I take. Well since the list can be pretty long I normally just print out a copy of it to give to the doctors to just put in the chart instead of having them copy it all out. First hint that this guy was 'odd' was the girl literally cut around every single sentance, there was no white space at all because the doctor liked the medication list in a certain part of the form that he uses (sorry for trying to help!). I told her she could copy it down if she wanted but she finally got it to fit. I was called in straight to his office once I had been checked in (there was no one else in the waiting room). So mom comes with me and we enter this little office that has two chairs, an exam table that seemed more to fit a gyne office than a rheumy office, his little desk and computer. While he is looking at the computer he has his back to us, the room was so small and badly laid out. This all noted before the appointment even started.
He goes over my chart and asks why I am there. Not a question I expected, my GP looked like he had sent a pile of information and a letter but anyways. I tell him that I was looking for a doctor to take over 'managing' my EDS issues. Right off the bat - "There is no cure for EDS", but said in a tone like I was stupid to not already know this. At that point I look at mom and she goes in that my old rheumy had a stroke but had been in charge of medications, tests and anything EDS related as my GP doesnt' know enough about it. At this point he looks me over and turns back to my chart. "Who has put you on these massive doses of physcotropic medications?". Huh? I take 110mg of elavil at night for headaches and 100mg every 12 hours for nerve pain. I tell him that my GP did it and the reasons for the medications. He then asks why I am on so much pain medications because... here is our favourite line... "EDS does not cause pain". Thankfully, hearing it so often I expect this now and answered back that no, EDS in itself does not cause pain, but the dislocations and sprains that are caused by the EDS do cause pain. He feels my doses are too high and I need to stop all my medications. Mom but in a this point and said that it was obvious the pain meds were needed and anyways, I always try advil first and only take meds if it is really bad, or an injury that is going to cause pain and I take them to try and head off the pain before it got to bad (which my old rheumy drilled in to my head and I finally accepted). He tells me that these levels of medication are going to turn me into a drug addict and I will have no options left when I am older. Mom just said "We watch them" and that was it thankfully. He turns and looks at me again, not saying a word and then it was at this point that I realized that the appointment was not going to be productive.
"How much do you weigh?" followed by a quick calculation and telling me that if I just lost 60lbs I wouldn't have any problems. I have never been at that weight since I was a child and I dont think I am that overweight. I would like to be 20bs smaller but have more important things to deal with. He goes on to tell us that ALL my joint pain is because I am so heavy and all I am doing is wrecking my joints. I ask him what does my weight have to do with my wrists and shoulders and get his patented 'Well, okay, but..." line. Mom tells him that we are going through things right not to find out what is going on with my stomach and went to say "She is having a gastric... " and he jumps up with 'Oh good!' and I quickly corrected him and said I am having a endo-scope done because I have gastroparesis and swallowing issues that we are trying to figure out "Well, okay, but..." mom tells him that I do not actually eat that much, and that I ate barely anything anymore because I can't eat it. Get this one.... "Well people in concentration camps weren't overweight"!!! He tells mom (wasn't even addressing me at this point) that people who eat 1000 calories a day will easily lose weight. Mom got mad then and said she doubted I even ate 100 calories most days (we kept track for a few after this appointment and I didn't hit 1000 any of those days). Mom then mentioned that it was most of the medications that were causing weight issues. He then tells me that I need to get off my masisve doses of physcotropic meds because that was the problem. Also needed off the pain meds, the depo shot and one of the other ones. I told him that I was not willing to stop those medications but he kept insisting I needed to stop the elavil and why did I need it anways. I told him that if I stopped taking it I would be stuck in bed for a week at a time basically every other week because of severe headaches and that the elavil was the ONLY thing that we found to help them. Then added that I have been on it for many years with no other problems and if I had to pick the headaches or the weight issues I would easily pick the weight issues. "Well, okay, but...". Thankfully he seemed to finally step away from that topic so he could focus on something new.
"If you lost weight you would not have any joint problems". At this point neither mom and I were taking him seriously but decided to continue humouring him in case he did have some actual helpful information. I told him that I knew the weight was not helping my joints (I am not stupid thanks!). He told me that my knee problems would go away when I lost weight. I asked him then how that worked as I was at a healthy BMI and weight when I had all three of my knee surgeries and problems. "Well, fine, but..." I then asked how my weight impacted on my wrist and shoulder joints. Well when he had no answer for that he started on the next part which just blew me away!
"If you stopped doing acrobatic activity you wouldn't dislocate your joints"!!!!! I actually laughed out loud at this one and just looked at my mom wide eyed and mouth open. I could not believe he said that. After laughing I told him how the first time I dislocated my wrist was when I went to turn my bedside lamp on. How I can dislocate my wrist / elbow getting up off the couch, how I dislocated my knee getting in the truck. "Well, okay, but... if you just stopped doing those things you wouldn't have joint problems". Mom got mad at this point and again repeated things I had dislocated and how (opening a jar, cutting meat etc) and what was I going to be allowed to do? I asked if he expected me to lie in bed in a dark room 24/7 because I dislocate turning on lamps, getting out of bed, even rolling over in bed etc. "Well, okay, but..." At this point I started getting my coat on but he didn't seem to get the idea and mom took over because she knew I was done. She asked about the autoimmune testing and he goes on to tell her that I have no autoimmune features (did I mention he never touched me a single time during the appointment?) and I probably had a chest infection when I had blood work done ?!?!?!? He then said that they should be re-run so he pulls out a blood request form. He then goes "I am going to test your for all metabolic disorders too". Thanks, been there done that. Looked at the form when he handed it to me and all it was was ana, c-reactive protein and then cortisol, diabetes etc. More tests for metabolic disorders than actually rheumatological disorders! He then said he wanted to see me back in a week.
We walked out of the office and the receptionist ask if I need to make a follow up appointment and mom looks at me and I tell her 'No, I will not be coming back to this doctor thank you" and walked right out the door. Once we were in the care we were just dumbstruck for a few minutes then startedd to go over all his little gems. Mom then tells me I better take my 'handfull of pills' so we can go do some shopping lol. Over the next few days we remembered things and would talk about them and just how wrong he was about so many many things. Because that was shortly before Christmas, we have not been back to my GP to go over this appointment but that should be a fun appointment too!
We got in and the receptionist goes over everything and asks for the names of medications I take. Well since the list can be pretty long I normally just print out a copy of it to give to the doctors to just put in the chart instead of having them copy it all out. First hint that this guy was 'odd' was the girl literally cut around every single sentance, there was no white space at all because the doctor liked the medication list in a certain part of the form that he uses (sorry for trying to help!). I told her she could copy it down if she wanted but she finally got it to fit. I was called in straight to his office once I had been checked in (there was no one else in the waiting room). So mom comes with me and we enter this little office that has two chairs, an exam table that seemed more to fit a gyne office than a rheumy office, his little desk and computer. While he is looking at the computer he has his back to us, the room was so small and badly laid out. This all noted before the appointment even started.
He goes over my chart and asks why I am there. Not a question I expected, my GP looked like he had sent a pile of information and a letter but anyways. I tell him that I was looking for a doctor to take over 'managing' my EDS issues. Right off the bat - "There is no cure for EDS", but said in a tone like I was stupid to not already know this. At that point I look at mom and she goes in that my old rheumy had a stroke but had been in charge of medications, tests and anything EDS related as my GP doesnt' know enough about it. At this point he looks me over and turns back to my chart. "Who has put you on these massive doses of physcotropic medications?". Huh? I take 110mg of elavil at night for headaches and 100mg every 12 hours for nerve pain. I tell him that my GP did it and the reasons for the medications. He then asks why I am on so much pain medications because... here is our favourite line... "EDS does not cause pain". Thankfully, hearing it so often I expect this now and answered back that no, EDS in itself does not cause pain, but the dislocations and sprains that are caused by the EDS do cause pain. He feels my doses are too high and I need to stop all my medications. Mom but in a this point and said that it was obvious the pain meds were needed and anyways, I always try advil first and only take meds if it is really bad, or an injury that is going to cause pain and I take them to try and head off the pain before it got to bad (which my old rheumy drilled in to my head and I finally accepted). He tells me that these levels of medication are going to turn me into a drug addict and I will have no options left when I am older. Mom just said "We watch them" and that was it thankfully. He turns and looks at me again, not saying a word and then it was at this point that I realized that the appointment was not going to be productive.
"How much do you weigh?" followed by a quick calculation and telling me that if I just lost 60lbs I wouldn't have any problems. I have never been at that weight since I was a child and I dont think I am that overweight. I would like to be 20bs smaller but have more important things to deal with. He goes on to tell us that ALL my joint pain is because I am so heavy and all I am doing is wrecking my joints. I ask him what does my weight have to do with my wrists and shoulders and get his patented 'Well, okay, but..." line. Mom tells him that we are going through things right not to find out what is going on with my stomach and went to say "She is having a gastric... " and he jumps up with 'Oh good!' and I quickly corrected him and said I am having a endo-scope done because I have gastroparesis and swallowing issues that we are trying to figure out "Well, okay, but..." mom tells him that I do not actually eat that much, and that I ate barely anything anymore because I can't eat it. Get this one.... "Well people in concentration camps weren't overweight"!!! He tells mom (wasn't even addressing me at this point) that people who eat 1000 calories a day will easily lose weight. Mom got mad then and said she doubted I even ate 100 calories most days (we kept track for a few after this appointment and I didn't hit 1000 any of those days). Mom then mentioned that it was most of the medications that were causing weight issues. He then tells me that I need to get off my masisve doses of physcotropic meds because that was the problem. Also needed off the pain meds, the depo shot and one of the other ones. I told him that I was not willing to stop those medications but he kept insisting I needed to stop the elavil and why did I need it anways. I told him that if I stopped taking it I would be stuck in bed for a week at a time basically every other week because of severe headaches and that the elavil was the ONLY thing that we found to help them. Then added that I have been on it for many years with no other problems and if I had to pick the headaches or the weight issues I would easily pick the weight issues. "Well, okay, but...". Thankfully he seemed to finally step away from that topic so he could focus on something new.
"If you lost weight you would not have any joint problems". At this point neither mom and I were taking him seriously but decided to continue humouring him in case he did have some actual helpful information. I told him that I knew the weight was not helping my joints (I am not stupid thanks!). He told me that my knee problems would go away when I lost weight. I asked him then how that worked as I was at a healthy BMI and weight when I had all three of my knee surgeries and problems. "Well, fine, but..." I then asked how my weight impacted on my wrist and shoulder joints. Well when he had no answer for that he started on the next part which just blew me away!
"If you stopped doing acrobatic activity you wouldn't dislocate your joints"!!!!! I actually laughed out loud at this one and just looked at my mom wide eyed and mouth open. I could not believe he said that. After laughing I told him how the first time I dislocated my wrist was when I went to turn my bedside lamp on. How I can dislocate my wrist / elbow getting up off the couch, how I dislocated my knee getting in the truck. "Well, okay, but... if you just stopped doing those things you wouldn't have joint problems". Mom got mad at this point and again repeated things I had dislocated and how (opening a jar, cutting meat etc) and what was I going to be allowed to do? I asked if he expected me to lie in bed in a dark room 24/7 because I dislocate turning on lamps, getting out of bed, even rolling over in bed etc. "Well, okay, but..." At this point I started getting my coat on but he didn't seem to get the idea and mom took over because she knew I was done. She asked about the autoimmune testing and he goes on to tell her that I have no autoimmune features (did I mention he never touched me a single time during the appointment?) and I probably had a chest infection when I had blood work done ?!?!?!? He then said that they should be re-run so he pulls out a blood request form. He then goes "I am going to test your for all metabolic disorders too". Thanks, been there done that. Looked at the form when he handed it to me and all it was was ana, c-reactive protein and then cortisol, diabetes etc. More tests for metabolic disorders than actually rheumatological disorders! He then said he wanted to see me back in a week.
We walked out of the office and the receptionist ask if I need to make a follow up appointment and mom looks at me and I tell her 'No, I will not be coming back to this doctor thank you" and walked right out the door. Once we were in the care we were just dumbstruck for a few minutes then startedd to go over all his little gems. Mom then tells me I better take my 'handfull of pills' so we can go do some shopping lol. Over the next few days we remembered things and would talk about them and just how wrong he was about so many many things. Because that was shortly before Christmas, we have not been back to my GP to go over this appointment but that should be a fun appointment too!
Sunday, January 1, 2012
Explaining my absence
Well, another period of time has passed without an update and I am very sorry. Figured I should explain what is going on. I have been having more and more shoulder pain since this summer and had to move my laptop from my downstairs bedroom (with a couch that is not shoulder friendly) to the upstairs living room (which is shoulder friendly, and back and leg and ... ). No one in my family knows about this blog so I don't want to update it or write any entry while they are around. Plus I have been more and more fatigued lately so am not staying up much past when my parents and nephew head of to bed. Also there are the normal (for EDSers) issues of my fingers and wrists being more painfull and stiff and what not during these cold winter months and the fact that my shoulder is deteriorating. I still have posts that I want to write, its just finding the time to write those when no one is up (or around) and my shoulder isn't behaving too badly.
Hope everyone had a great new years and here's hoping that 2012 is better for all of us EDSers!!
Hope everyone had a great new years and here's hoping that 2012 is better for all of us EDSers!!
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