So in early August of 2000 I went in and let Dr. S (Orthapedic Surgeon) perform a Lateral Release on my right knee. He actually proposed that he do both knees at the same time because they would both eventually need to be done. I refused that because of, well common sense really. It was basically decided that I would get my right knee done then as it was the worst one and then go back the next summer and have the left knee done.
The actually surgery went okay and it was expected that I would make a full recovery and get rid of most of the tracking issues. He had to do a clean up of under the knee cap and said that my knee was very 'soft' (Chondromalasia Patella) and could be dislocated easily. I was on bed rest for a while but was up on crutches pretty quickly and didn't have to wear any type of brace. I was in physiotherapy immediatly after and got my strength and ROM back almost instantly. Only down side - No pain relief at all. Over the next year I would drive back home (2.5 hours from school) to see the doctor only to have him tell me "once you can straight leg lift 10lbs you'll be fine", then "once you can lift 15lbs" etc and kept upping that by 5lbs each time (which later in retrospect a new physiotherapist was disgusted at that as that type of weight could have seriously affected my hip). I was also told many times that I had 'ugly' scars and that I should get a plastic surgeon to sew me up 'next time'.
The last appointment I went to of that surgeon was when he suggested I drive the 2.5 hours home, during final exams, have a cortisone shot in my knee then drive the 2.5 hours back to school that day. I reluctantly agreed and when I went to the appointment he looked at me like I had two heads and said that he would never give a cortisone shot to someone so young (19 at the time). I was livid! I later got all the reports from him and apparetnly every appointment was my last, as he concluded at the end of every report "I have discharged her from my care".
After this I went to the specialist sport medicine center in the closest teaching hospital near by (which happened to be half way between were my parents lived and where I was going to school). The doctor (Dr. F) was amazing and right away realized that the lateral release was the worst thing that could have been done because my ligaments were too lax and not too tight. He told us that instead of the surgery stopping my knee from subluxing to the lateral side, it was now subluxing both laterally AND medially. He thought he knew what would work but wanted to go in for a scope first to look around and decide which to do. I had the scope done on March 22nd, 2002 and went in for a full repair of the lateral release (later retinacular repair). I did pretty well with that one. The only thing that didn't go well is that I had to wear the immobalizer brace longer than expected because I was actully getting my range of motion back too quickly. Things went well until I aggrevated the knee and ended up with tendonitis and bursitis in the joint that I had to go back to Dr. F to find out what I could do then. This proved to be a great thing!
I went in and of course, because it was a teaching hospital, I saw a few different level's of students before I actually saw Dr. F. Well I was being examined the fellow noticed that I had hypermobile knees and asked me to do a few 'tricks'. Then when Dr. F came into the room, the fellow said that he thought I might have a connective tissue disorder, but Dr. F said that no I probably didn't because I was so short. We finished the appointment and we decided we would try a cortisone shot (Couldn't get it then because I had drove myself to the appointment so would have to drive an hour back at that point). That litle thought stuck right in my head though.
I got home and started looking into it and it was just so eye-opening. All those things that we blamed on the prematurity, all those things that we just never had a clue as to why they happened - they finally all fit into the description of EDS. I became almost obsessed about it and researching all I could about it. In retrospect my mom thought I was just trying to make something fit to explain things and that it was so rare and there was no family history it just didn't make sense. I didn't drop it though and did some researching and found about a geneticist that was very knowledgeable about EDS about an hour and a half away from my univserity town. I went in and basically told my GP to refer me to her (Dr. M) and he did. Dr. M's office contacted me with things that I had to do (family history, family tree etc) and said that they would contact me in a little to go over these things. Generally you call and talk to a student and then that student will go and talk with Dr M, and if Dr. M thought she needed to see you, someone would call and set up an appointment for you. Well I skipped steps. I did the phone interview and given an appointment date a few weeks later.
Obviously, I saw this Dr and she told me that I basicaly had a textbook case of EDS, except for the fact that it didn't seem to be in my family. My dad had some hypermobility and a few joint problems but also a lot of 'anti-EDS' situations. His issues could also have been because he had polio as a child. We found out at this appointment that I was premature because I had EDS, that I would need to get into a pain clinic, get into a good doctor to monitor my condition and that I would need to research my condition a lot because most doctors wouldn't have a clue as to how to treat me.
At this point we started the trial - and - error part of the post - EDS diagnosis that we all go through. But it is late here, and I have typed up a lot so there will be a part three to all this.
Tuesday, March 20, 2012
Tuesday, March 13, 2012
Journey to Becoming a Zebra - Part One
As this is my 100th post I deceided to do something special for the post. I realized that I never wrote about how I was diagnosed. It was a bit of a struggle but not as bad as some people. I am going to split this into three parts - "Before EDS", "Getting the EDS Diagnosis" and "Post Diagnosis".
Before EDS
It all started on a late winter night, literally. I was due to be born on March 17th, however I apparently could not wait and I was born at 29 weeks on December 27th (which is kinda creepy as the family has a strong 27th theme with birthdays - will post that another time). My dad's side of the family had left earlier in the day to go home as they were down to our place that Christmas. Mom ended up having spotting and then her water broke. My parents were very worried as they never thought that they would be able to have children (and adopted my brother 9 years previous) and mom had suffered a miscarrige. My parents got their friend (close friend, my brother and their son grew up together) to come and stay with my brother and rushed to the hospital. We live about an hour from the nearest Children's hospital with a NICU but one my mom got to our hospital the doctor's realized that even though they wished they could send my mom by ambulance to the Children's hospital, they knew that there just wasn't going to be enough time to do so safely and I would have been born in the back of the ambulance which was even more risky. The doctor's instantly took my mom to have a c-section and a special neo-natal ambulance with incubator and all the needed tools was dispatched to our hospital to wait for me. I was born at 11:46pm and weighed only 2 lbs 8 oz. The doctors were doubtfull that I would survive and my mom was never even allowed to really see me before the sent me off to the children's hospital. My dad was distraught (and had only been sober for a year and a half) and did not know what to do but ended up staying with my mom (and brother) to wait for news from the other hospital. My nan and poppa on my dad's side found out what happened when they called to tell my parents that they got home safely and when they heard the news they immediatly packed up and came back down. That was it for that night.
Over the next week or so my dad finally got down to see me and was able to hold my entire body just in his hand. Of course living an hour away and having a son at home, and my mom being in the hospital still (recovering from the c-section and shock) they had to rely a lot on the nurses in the NICU for updates. It scared them when they would call down and the nurse would tell them that I only had 6 apnea attacks that night, dad would ask what an apnea attack was and the nurse non-chalantly told him that it meant I had stopped breathing! It also took a good few days before I had a name and the NICU nurses told my parents that they needed a name so they could talk to me. I dropped down to under 2lbs that first week but amazingly survived with very very few health problems. The doctors were all shocked that at 29 weeks I was born with fingernails and hair. They did many many tests but could never find out why I was premature. I was moved to our hometown hospital after about a month and finally released home on February 5th to very scared parents lol. More and more tests were done with still no reason for me being a micro-preemie. My parents had thought about having another child soon after me so I would have someone close in age to me since there was such a age difference between my brother and I. The doctors told them that it was definitly not advisable as they had no clue why I was so early and couldn't do anything to prevent it happening again, which was also likely.
As a toddler, my parents had to stop me from walking. I had to get special shoes with a lot of support and was put in a 'jolly jumper' to help build up muscle. Doctor's were still confused over me as even being so early, I was hitting all of my developement milestones on time (preemie's should hit their milestones according to their due date, not their birthdate - at least that was done 30 years ago). Once I was getting mobile the doctor's sent me to the 'rotary center'. It was a place in town that dealt with all types of disabilities and developement problems (ironicly my nephew ened up at the same center 20 years later). My dad was very hesitant about it as he was very very protective of me. As fate would have it though the first appointment they took me to, the receptionist was a long-time friend that dad didn't even know worked there who assured my dad that I was in the best hands possible. Obviously I do not remember any of this but I stayed with the center for a significant time (walking through to kindergarten). I was done there when they did pre-school testing to determine if I was 'ready' to start school (because of my birthdate I could start at 4 or 5), they deemed it was better for me to go to school early as I was intellectually ready but socially immature - which would just get worse not being in school.
I had the normal childhood issues growing up but times ten. I had my tonsils and adenoids out, tubes in my ears (twice), a concussion and bilateral pneumonia so I was in the hospital quite a bit when I was younger, like up until the age of 8. I did have chronic sinus infection so was on a pile of antibiotics and did miss quite a bit of school all the way through high school (and still have at least two infections during the colder months). It just seemed like I had a weakened immune system, which the doctors always just associated with the prematurity. I had to be formula feed as a baby because I was lactose intolerant so that was used as a reason too. One thing that was quite clear though was that I was a massive klutz! Sports were just torture for me as I was always twisting my ankles or falling over. The only 'sport' I did was swimming lessons, and that was mainly because we had a swimming pool in the backyard and my parents wanted to make sure that I could swim and handle myself in water.
Things did start to change in high school, which is typical for EDSers as hormone changes really affect us. I remember being 'diagnosed' with tendonitis in my right hand in grade 9, sent to physio for my knee in grade 9 and just more minor injuries. I also started right back up with the sinus infections and would get run down really easy. In my school not all subjects had mandatory finals. If your mark was below a certain grade, or if you missed 10 or more classes a term you would have to write the final. I had to write every final that was given in high school. I also suffered with really bad acne all through school and in grade 12 or OAC (Ontario Academic Credit - grade 13 if you wanted to go to university, college and university is quite different in Canada unlike the US) was re-diagnsed with asthma and chronic sinusitis.
However it was in my last year that things started getting iffy. I was suffering with more and more joint pain (wrists, knees and one ankle) and more infections. First semester of my last year I was sent back to the physiotherapist for treatment on my right knee. And after there was no improvement (and slightly making it worse) I was refered to an Orthatpedic Surgeon. I was able to get in to see him near the end of the year and after a very breif appointment he decided that he knew what the problem was and that surgery would fix it. So I was set up for a surgery date of early August. This was scarey as I was due to start university 2.5 hours away at the beginning of September. It also ended up being the worst decision of my life!
What happened after surgery was ....... Part Two ;)
Before EDS
It all started on a late winter night, literally. I was due to be born on March 17th, however I apparently could not wait and I was born at 29 weeks on December 27th (which is kinda creepy as the family has a strong 27th theme with birthdays - will post that another time). My dad's side of the family had left earlier in the day to go home as they were down to our place that Christmas. Mom ended up having spotting and then her water broke. My parents were very worried as they never thought that they would be able to have children (and adopted my brother 9 years previous) and mom had suffered a miscarrige. My parents got their friend (close friend, my brother and their son grew up together) to come and stay with my brother and rushed to the hospital. We live about an hour from the nearest Children's hospital with a NICU but one my mom got to our hospital the doctor's realized that even though they wished they could send my mom by ambulance to the Children's hospital, they knew that there just wasn't going to be enough time to do so safely and I would have been born in the back of the ambulance which was even more risky. The doctor's instantly took my mom to have a c-section and a special neo-natal ambulance with incubator and all the needed tools was dispatched to our hospital to wait for me. I was born at 11:46pm and weighed only 2 lbs 8 oz. The doctors were doubtfull that I would survive and my mom was never even allowed to really see me before the sent me off to the children's hospital. My dad was distraught (and had only been sober for a year and a half) and did not know what to do but ended up staying with my mom (and brother) to wait for news from the other hospital. My nan and poppa on my dad's side found out what happened when they called to tell my parents that they got home safely and when they heard the news they immediatly packed up and came back down. That was it for that night.
Over the next week or so my dad finally got down to see me and was able to hold my entire body just in his hand. Of course living an hour away and having a son at home, and my mom being in the hospital still (recovering from the c-section and shock) they had to rely a lot on the nurses in the NICU for updates. It scared them when they would call down and the nurse would tell them that I only had 6 apnea attacks that night, dad would ask what an apnea attack was and the nurse non-chalantly told him that it meant I had stopped breathing! It also took a good few days before I had a name and the NICU nurses told my parents that they needed a name so they could talk to me. I dropped down to under 2lbs that first week but amazingly survived with very very few health problems. The doctors were all shocked that at 29 weeks I was born with fingernails and hair. They did many many tests but could never find out why I was premature. I was moved to our hometown hospital after about a month and finally released home on February 5th to very scared parents lol. More and more tests were done with still no reason for me being a micro-preemie. My parents had thought about having another child soon after me so I would have someone close in age to me since there was such a age difference between my brother and I. The doctors told them that it was definitly not advisable as they had no clue why I was so early and couldn't do anything to prevent it happening again, which was also likely.
As a toddler, my parents had to stop me from walking. I had to get special shoes with a lot of support and was put in a 'jolly jumper' to help build up muscle. Doctor's were still confused over me as even being so early, I was hitting all of my developement milestones on time (preemie's should hit their milestones according to their due date, not their birthdate - at least that was done 30 years ago). Once I was getting mobile the doctor's sent me to the 'rotary center'. It was a place in town that dealt with all types of disabilities and developement problems (ironicly my nephew ened up at the same center 20 years later). My dad was very hesitant about it as he was very very protective of me. As fate would have it though the first appointment they took me to, the receptionist was a long-time friend that dad didn't even know worked there who assured my dad that I was in the best hands possible. Obviously I do not remember any of this but I stayed with the center for a significant time (walking through to kindergarten). I was done there when they did pre-school testing to determine if I was 'ready' to start school (because of my birthdate I could start at 4 or 5), they deemed it was better for me to go to school early as I was intellectually ready but socially immature - which would just get worse not being in school.
I had the normal childhood issues growing up but times ten. I had my tonsils and adenoids out, tubes in my ears (twice), a concussion and bilateral pneumonia so I was in the hospital quite a bit when I was younger, like up until the age of 8. I did have chronic sinus infection so was on a pile of antibiotics and did miss quite a bit of school all the way through high school (and still have at least two infections during the colder months). It just seemed like I had a weakened immune system, which the doctors always just associated with the prematurity. I had to be formula feed as a baby because I was lactose intolerant so that was used as a reason too. One thing that was quite clear though was that I was a massive klutz! Sports were just torture for me as I was always twisting my ankles or falling over. The only 'sport' I did was swimming lessons, and that was mainly because we had a swimming pool in the backyard and my parents wanted to make sure that I could swim and handle myself in water.
Things did start to change in high school, which is typical for EDSers as hormone changes really affect us. I remember being 'diagnosed' with tendonitis in my right hand in grade 9, sent to physio for my knee in grade 9 and just more minor injuries. I also started right back up with the sinus infections and would get run down really easy. In my school not all subjects had mandatory finals. If your mark was below a certain grade, or if you missed 10 or more classes a term you would have to write the final. I had to write every final that was given in high school. I also suffered with really bad acne all through school and in grade 12 or OAC (Ontario Academic Credit - grade 13 if you wanted to go to university, college and university is quite different in Canada unlike the US) was re-diagnsed with asthma and chronic sinusitis.
However it was in my last year that things started getting iffy. I was suffering with more and more joint pain (wrists, knees and one ankle) and more infections. First semester of my last year I was sent back to the physiotherapist for treatment on my right knee. And after there was no improvement (and slightly making it worse) I was refered to an Orthatpedic Surgeon. I was able to get in to see him near the end of the year and after a very breif appointment he decided that he knew what the problem was and that surgery would fix it. So I was set up for a surgery date of early August. This was scarey as I was due to start university 2.5 hours away at the beginning of September. It also ended up being the worst decision of my life!
What happened after surgery was ....... Part Two ;)
Tuesday, February 28, 2012
Good doctors appointment!
Last week I had a very surprising doctor's appointment. Everything went well, we found something that when corrected most likely will make a great improvement, and I was able to check almost everything off my list (and the one not crossed off was addressed). So here is what went on:
1) Rheumy I hated from a few months ago had never sent anything at all regarding our appointment. Probably because he has disappeared. Literally disappeared! The College of Physicans and Surgeons has no clue where he is, his website has been taken down that the dr who shared a building with him has no clue where he has gone and rumours are he had no clue he was even leaving town. The local newspaper even did a full story on it and complaints are being lodged against him. When I told my GP (Dr. B) what he had told me about my weight and acrobatic activities he just shock his head and called him an idiot. We have never ever heard my dr bad mouth another one, and we have been going to him for 35+ years!!
2) About the scope and the results from that. Among what was foun was non-ulcer dyspepsia (upset stomach or indigestion not from an ulcer); Atypical dysphagia (difficulty swallowing for an unknown reason); gastritis (inflamation of the stomach lining); no strictures were found (nothing physical causing the swallowing problems); acid and bile reflux (we knew of the acid before hand but not the bile); delayed gastric emptying (gasteroparesis - just as the name says, food stays in my stomach too long) and that she believes that my swallowing problems are from a combination of autonomic dysfunction flares coupled with oesophegus spasms. Good news was nothing was biopsied, no 'bad germs' were found and basically nothing bad like tumours or bleeding. She suggests that I try the medication called domperidone in the report. Dr B didn't think that it would make any difference but when I looked it up later at home I realize that she is wanting to try it because of the delayed gastric emptying and not the GERD or swallowing that I assume he assumed. I did call her office to make a follow-up but because I go for all my annual cardiac testing in april and have a follow-up in may, the office said she prefers to wait until all the tests are in before a follow-up is made. I tried to tell them that these tests were for my stomach and the other tests are for my heart and totally unrelated so the office told me that they would talk to my dr and see if she wanted me in. Still waiting for that.
3) I needed my pain meds changed which was actually pretty easy. He was happy to get me off of the breakthrough med that I had been on as he didn't like it. He even asked who perscribed it last and I had to tell him that he did. I dont think he was completely convinced that rotating the meds helps so I don't build tolerance, but he did change them around for me.
4) Obviously even if I did like the last rheumy, he is no long around to go to. Dr. B says he has heard through the hospital that a new rheumy will be in town within the next few months so he wants me to just wait for now and get into this new doctor. As things are pretty stable (except for one joint - more later) and Dr. B is willing to handle my medications, I am okay with this.
5) My shoulder has been really bothering me lately. If my old rheumy was still around he would have done a cortisone shot months ago! When I asked Dr. B about this he asked where I had had the injections (two in the AC joint, one for tendonitis, one for bursitis) but says he does not want me to have any more cortisone in ANY joint becasue of the osteoporosis. He feels that the risk of more damage is too high to chance a few months of relief. Because of this he is sending me to an orthapedic surgeon in town. I dont have a appointment date but I will keep this blog updated.
6) Finally the last item was the bloodwork I had done the week before. All the autoimmune came back okay this time so he is thinking that it whatever I have is dormant right now and that when I get into the rheumy he wants this investigated further. The C-reactive protein is still quite elevated but we do know that lately with my joints being more painful that there is some more inflamation going on. Again, it's something to keep an eye on, but nothing serious at this point. However, there was one test that completely scared him, it actually scared my doctor!! My vitamin D levels are very worringly low. I am very deficient in Vitamin D for some reason. This, coupled with the osteoporosis are pretty dangerous. However, he has never seen levels this low so itsn't too sure what to do to treat it. He just had me get some vitamin d drops and take at least 3 times the daily dose. I am hopeful that this is the reason for the problems I have been having in my legs. They have been so painful and weak. I avoid stairs at all costs and have been having a lot of restless leg symptoms again. I have most of the symptoms so am keeping my fingers crossed that when we get the D levels back to normal, my legs wont be so bad in certain ways. After the appointment I asked the secretary for copies of the report (scope) and bloodwork and when she looked at it she was shocked too and looked at me and made a note that it was a good thing I had thought to test it as no doctor has ever suggested it tested.
7) Just as we were about to leave mom mentions that she thought we actually had something to show him this time as my wrist had been sliding in and out all morning. Then we were absolutly shocked!!! He says "I dont need to see that, we know that she dislocates as that is what goes along with the EDS, no one is doubting that"!! Well, a few years ago, HE did actually doubt that. Shows the ground we have gained with him and that he is finally starting to fully get it!
The only thing that we did not get discussed was a medic alert bracelet. We did mention the issue I had with the sedatives and my past issues with local anesthetics so they do know about it, we just didnt ask about whether I should get a medic alert bracelet. However both my parents feel that it would definitly be a good idea to have, not only for that but for many other issues. I have asked around and looked into it and now all I have to do is figure out which bracelet I want.
1) Rheumy I hated from a few months ago had never sent anything at all regarding our appointment. Probably because he has disappeared. Literally disappeared! The College of Physicans and Surgeons has no clue where he is, his website has been taken down that the dr who shared a building with him has no clue where he has gone and rumours are he had no clue he was even leaving town. The local newspaper even did a full story on it and complaints are being lodged against him. When I told my GP (Dr. B) what he had told me about my weight and acrobatic activities he just shock his head and called him an idiot. We have never ever heard my dr bad mouth another one, and we have been going to him for 35+ years!!
2) About the scope and the results from that. Among what was foun was non-ulcer dyspepsia (upset stomach or indigestion not from an ulcer); Atypical dysphagia (difficulty swallowing for an unknown reason); gastritis (inflamation of the stomach lining); no strictures were found (nothing physical causing the swallowing problems); acid and bile reflux (we knew of the acid before hand but not the bile); delayed gastric emptying (gasteroparesis - just as the name says, food stays in my stomach too long) and that she believes that my swallowing problems are from a combination of autonomic dysfunction flares coupled with oesophegus spasms. Good news was nothing was biopsied, no 'bad germs' were found and basically nothing bad like tumours or bleeding. She suggests that I try the medication called domperidone in the report. Dr B didn't think that it would make any difference but when I looked it up later at home I realize that she is wanting to try it because of the delayed gastric emptying and not the GERD or swallowing that I assume he assumed. I did call her office to make a follow-up but because I go for all my annual cardiac testing in april and have a follow-up in may, the office said she prefers to wait until all the tests are in before a follow-up is made. I tried to tell them that these tests were for my stomach and the other tests are for my heart and totally unrelated so the office told me that they would talk to my dr and see if she wanted me in. Still waiting for that.
3) I needed my pain meds changed which was actually pretty easy. He was happy to get me off of the breakthrough med that I had been on as he didn't like it. He even asked who perscribed it last and I had to tell him that he did. I dont think he was completely convinced that rotating the meds helps so I don't build tolerance, but he did change them around for me.
4) Obviously even if I did like the last rheumy, he is no long around to go to. Dr. B says he has heard through the hospital that a new rheumy will be in town within the next few months so he wants me to just wait for now and get into this new doctor. As things are pretty stable (except for one joint - more later) and Dr. B is willing to handle my medications, I am okay with this.
5) My shoulder has been really bothering me lately. If my old rheumy was still around he would have done a cortisone shot months ago! When I asked Dr. B about this he asked where I had had the injections (two in the AC joint, one for tendonitis, one for bursitis) but says he does not want me to have any more cortisone in ANY joint becasue of the osteoporosis. He feels that the risk of more damage is too high to chance a few months of relief. Because of this he is sending me to an orthapedic surgeon in town. I dont have a appointment date but I will keep this blog updated.
6) Finally the last item was the bloodwork I had done the week before. All the autoimmune came back okay this time so he is thinking that it whatever I have is dormant right now and that when I get into the rheumy he wants this investigated further. The C-reactive protein is still quite elevated but we do know that lately with my joints being more painful that there is some more inflamation going on. Again, it's something to keep an eye on, but nothing serious at this point. However, there was one test that completely scared him, it actually scared my doctor!! My vitamin D levels are very worringly low. I am very deficient in Vitamin D for some reason. This, coupled with the osteoporosis are pretty dangerous. However, he has never seen levels this low so itsn't too sure what to do to treat it. He just had me get some vitamin d drops and take at least 3 times the daily dose. I am hopeful that this is the reason for the problems I have been having in my legs. They have been so painful and weak. I avoid stairs at all costs and have been having a lot of restless leg symptoms again. I have most of the symptoms so am keeping my fingers crossed that when we get the D levels back to normal, my legs wont be so bad in certain ways. After the appointment I asked the secretary for copies of the report (scope) and bloodwork and when she looked at it she was shocked too and looked at me and made a note that it was a good thing I had thought to test it as no doctor has ever suggested it tested.
7) Just as we were about to leave mom mentions that she thought we actually had something to show him this time as my wrist had been sliding in and out all morning. Then we were absolutly shocked!!! He says "I dont need to see that, we know that she dislocates as that is what goes along with the EDS, no one is doubting that"!! Well, a few years ago, HE did actually doubt that. Shows the ground we have gained with him and that he is finally starting to fully get it!
The only thing that we did not get discussed was a medic alert bracelet. We did mention the issue I had with the sedatives and my past issues with local anesthetics so they do know about it, we just didnt ask about whether I should get a medic alert bracelet. However both my parents feel that it would definitly be a good idea to have, not only for that but for many other issues. I have asked around and looked into it and now all I have to do is figure out which bracelet I want.
Tuesday, February 21, 2012
Avoiding disaster! (and the normal blog update)
First - I have changed my mind and decided that my 100th post is actually going to be my journey to eds-ville as I realized that since I have moved to this blog (did post before on a different blog site) I haven't really delved into anything in my past. I will soon put up links though from my followers so if you haven't replied or emailed please do so if you want your link posted. If you are a follower who has a blog, I don't feel comfortable just automatically putting up your link and would like to have your permission before I link you. I know that seems kind of odd as you can just click on a persons name, but that is how I feel more cofortable in doing things (it's the computer programmer in me lol).
Things have been pretty good around here for the most part. No big issues or anything like that which is nice for a change. Also it seems like we avoided what could have been a MAJOR problem! My brother's fiance's daughter (I guess my step-neice? call her 'J') is sick. My nephew was at their house for about 30 minutes last tuesday and also had a visitation at their place on sunday for about 4 hours. Thankfully, for some reason, J was not at home while K was there on sunday. I say thankfully because we got a frantic call sunday night saying that they had just got home from the ER with J and she was diagnosed with........ Scarlet Fever!!! Thankfully she isn't too sick and they gave her antibiotics and had her fever gone by the time they left. Apparently it is not a serious disease anymore and is in the same range as strep throat which we found out is going around our community (my family and my brother's family live in the same small town of about 7000 people, but K and J go to different schools). As we read that it can take between 12 - 72 hours for signs to start showing and since K was home from school on friday with a sore thorat and no rash or fever has appeared on K (or me!) we seem to have avoided it completely! No visits will be done though until she is completly off of all antibiotics as my immune system is so low and I can get real sick, they know that we have to take more precautions than most (like no visits here during any chicken pox outbreaks in town).
Medically I have been having a lot of problems with two of my joints. My right shoulder is not feeling stable at all and in quite a bit of pain, but nothing compared to my right hip. I can not sit or lay down in a comfortable position. Late at night when I can't sleep because of it, it is bad enough that I get tears in my eyes. I have been doing breakthrough meds a lot more regularly that normal but thankfully have a GP appointment on thursday so I can get my medications switched over as it seems I am reaching my tolerance levels (I usually try not to change long-acting and breakthrough meds at the same time but I don't think it can be helped this time). Unfortnatly, as he is just my GP and I have no rheumy or joint doctor, nothing will be done unless I can convince him to do some scans or think about cortisone shots in one (or both) areas.
I did get bloodwork taken last week which was absolutely shocking. For the first time in many many years it only took one nurse, one stick, in my left elbow (normally only hands work) and no digging! They know me there and groaned when they saw how many vials they would need (did a complete autoimmune work up, even the tests that insurance doesnt cover!, my iron, B12 and vitamin D levels - total of 6 vials!). Originally it was only going to be for the autoimmune stuff but on the day I went to the office to ask for the other three tests and since I didn't know I decided to fast that night just in case. The lady took me into the room, joking away with me and my mom and got me settled in and the vials out. Now, for those who dont know me generally I have to have a heat pack on my hand before hand, butterfly needle into a vein on my hand between my fingers, two nurses basically using gravity to get the blood out, using a syringe because changing vials tends to make the vein collapse, lots of painful digging and anywhere from 1 - 3 attempts to get the blood. She has even told me that I am to always tell her to stick to my hand and not attempt the arm because she always feels a good vein but after digging she loses it and ends up going to my hand. So, like normal she starts feeling around and checks my arm and says she feels a really big vein there. After a few words exchanged I told her she could try the arm if she felt confident in it, which she did. She took the needle, stuck it straight in and as I was waiting for the digging to start I hear a noise. I opened my eyes and see that she wasn't digging because she was changing the vial to fill up # 2!! She got all six vials done in half the time it usually takes to just get a half full syringe! With no pain (and no bruising!). We were all very very shocked at how well it worked and mom joked that we should head right to the tattoo parlor and get a bullseye on it!!
Well I have a doctor's appointment on thursday where we will be discussing a LOT of different topics so I will post this weekend with what goes on.
Things have been pretty good around here for the most part. No big issues or anything like that which is nice for a change. Also it seems like we avoided what could have been a MAJOR problem! My brother's fiance's daughter (I guess my step-neice? call her 'J') is sick. My nephew was at their house for about 30 minutes last tuesday and also had a visitation at their place on sunday for about 4 hours. Thankfully, for some reason, J was not at home while K was there on sunday. I say thankfully because we got a frantic call sunday night saying that they had just got home from the ER with J and she was diagnosed with........ Scarlet Fever!!! Thankfully she isn't too sick and they gave her antibiotics and had her fever gone by the time they left. Apparently it is not a serious disease anymore and is in the same range as strep throat which we found out is going around our community (my family and my brother's family live in the same small town of about 7000 people, but K and J go to different schools). As we read that it can take between 12 - 72 hours for signs to start showing and since K was home from school on friday with a sore thorat and no rash or fever has appeared on K (or me!) we seem to have avoided it completely! No visits will be done though until she is completly off of all antibiotics as my immune system is so low and I can get real sick, they know that we have to take more precautions than most (like no visits here during any chicken pox outbreaks in town).
Medically I have been having a lot of problems with two of my joints. My right shoulder is not feeling stable at all and in quite a bit of pain, but nothing compared to my right hip. I can not sit or lay down in a comfortable position. Late at night when I can't sleep because of it, it is bad enough that I get tears in my eyes. I have been doing breakthrough meds a lot more regularly that normal but thankfully have a GP appointment on thursday so I can get my medications switched over as it seems I am reaching my tolerance levels (I usually try not to change long-acting and breakthrough meds at the same time but I don't think it can be helped this time). Unfortnatly, as he is just my GP and I have no rheumy or joint doctor, nothing will be done unless I can convince him to do some scans or think about cortisone shots in one (or both) areas.
I did get bloodwork taken last week which was absolutely shocking. For the first time in many many years it only took one nurse, one stick, in my left elbow (normally only hands work) and no digging! They know me there and groaned when they saw how many vials they would need (did a complete autoimmune work up, even the tests that insurance doesnt cover!, my iron, B12 and vitamin D levels - total of 6 vials!). Originally it was only going to be for the autoimmune stuff but on the day I went to the office to ask for the other three tests and since I didn't know I decided to fast that night just in case. The lady took me into the room, joking away with me and my mom and got me settled in and the vials out. Now, for those who dont know me generally I have to have a heat pack on my hand before hand, butterfly needle into a vein on my hand between my fingers, two nurses basically using gravity to get the blood out, using a syringe because changing vials tends to make the vein collapse, lots of painful digging and anywhere from 1 - 3 attempts to get the blood. She has even told me that I am to always tell her to stick to my hand and not attempt the arm because she always feels a good vein but after digging she loses it and ends up going to my hand. So, like normal she starts feeling around and checks my arm and says she feels a really big vein there. After a few words exchanged I told her she could try the arm if she felt confident in it, which she did. She took the needle, stuck it straight in and as I was waiting for the digging to start I hear a noise. I opened my eyes and see that she wasn't digging because she was changing the vial to fill up # 2!! She got all six vials done in half the time it usually takes to just get a half full syringe! With no pain (and no bruising!). We were all very very shocked at how well it worked and mom joked that we should head right to the tattoo parlor and get a bullseye on it!!
Well I have a doctor's appointment on thursday where we will be discussing a LOT of different topics so I will post this weekend with what goes on.
Monday, February 6, 2012
Rough week
First off, to my two new followers, welcome to my blog and I hope I don't bore you to death lol. I don't update my blog near as often as I should and hoping to get back into blogging regulary again. Thanks to all my other followers too! I am nearing my 100th post and was wondering if each of you could either e-mail me (if you know the email) or comment and tell me how you found the blog, why you are interested in it (do you have eds? family member? just random searchig?) and most importantly the link to your blog if you have it. I haven't put links along the side bar yet because I can't find out a layout I like for it so going to create a seperate page with info of my followers if you let me. If you have EDS you know that we need to stick together throughout all that we go through.
Secondly, why I haven't posted since the scope. Thankfully my dentist appointment got cancelled (wasn't looking foward to someone working with stuff in my mouth after what happened!), sadly though it was because I ended up with an infected throat as well as a build up of blood behind my left ear drum. I went to my GP first becasue I figured the returning throat pain was more likely to be a cold issue (especially as K missed school that day because he had a sore throat and cold) and didn't want to bother my specialist. When I called and explained what was going on the receptionist told me to get to the office asap to get it looked at. My GP ended up giving me a new anti-biotic (Biaxen - I never want to take it again!!!) and we breifly talked. I asked if I could get a blood requeistion form done up so we could have the results during a follow-up appointment. He asked why and I told him what the internist and rheumy said about the autoimmune and he just shock his head and said that they were not a fluke and that there was definitly something auto-immune going on, he just does not know what it is. He wrote up for a lot more tests than last time, any test that could point to autoimmune. Personally I am thinking it may be one of three - Sjogrens, Rheumatoid Arthritis or Lupus. I don't know what would actually happen if / when I am diagnosed as the medications for the auto-immune and what I need to take for the EDS don't seem to mesh well. My GP did write to send copies of the lab work to the rheumy I saw and I just said that I wouldn't be going back to him but he wanted to keep him in the loop. As I felt like crap and knew that we were going to discuss it at the next appointment I just let it slide. As of now I have one dose of anti-biotics left and have to go and get the bloodwork done tomorrow becasue my appointment with my GP is for the 13th. As a side note - I have not contacted my gastro / internist / cardiologist yet regarding the scope. Going to get the reports from her from my GP and go from there.
Secondly, why I haven't posted since the scope. Thankfully my dentist appointment got cancelled (wasn't looking foward to someone working with stuff in my mouth after what happened!), sadly though it was because I ended up with an infected throat as well as a build up of blood behind my left ear drum. I went to my GP first becasue I figured the returning throat pain was more likely to be a cold issue (especially as K missed school that day because he had a sore throat and cold) and didn't want to bother my specialist. When I called and explained what was going on the receptionist told me to get to the office asap to get it looked at. My GP ended up giving me a new anti-biotic (Biaxen - I never want to take it again!!!) and we breifly talked. I asked if I could get a blood requeistion form done up so we could have the results during a follow-up appointment. He asked why and I told him what the internist and rheumy said about the autoimmune and he just shock his head and said that they were not a fluke and that there was definitly something auto-immune going on, he just does not know what it is. He wrote up for a lot more tests than last time, any test that could point to autoimmune. Personally I am thinking it may be one of three - Sjogrens, Rheumatoid Arthritis or Lupus. I don't know what would actually happen if / when I am diagnosed as the medications for the auto-immune and what I need to take for the EDS don't seem to mesh well. My GP did write to send copies of the lab work to the rheumy I saw and I just said that I wouldn't be going back to him but he wanted to keep him in the loop. As I felt like crap and knew that we were going to discuss it at the next appointment I just let it slide. As of now I have one dose of anti-biotics left and have to go and get the bloodwork done tomorrow becasue my appointment with my GP is for the 13th. As a side note - I have not contacted my gastro / internist / cardiologist yet regarding the scope. Going to get the reports from her from my GP and go from there.
Friday, January 27, 2012
Horrible experience!!!
***** 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!
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!
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.
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