With my rheumatologist out of the picture for an unknown length of time (if he ever even comes back to practising that is) I was running out of my pain medications. I had called two week ago and was told that there were no appointments available until June 13th! I told her the situation and she told me to stop by on May 30th for a medication refill and made an appointment for June 13th.
I was nervous going to this 'visit', I wouldn't actually see the doctor per say. I went in, the nurse gave me a chair in the hall and asked what I needed. Well I had written down the medications I wanted and what dose. I was on Med-contin A and Med-breakthrough A and wanted to switch to Med-contin B and Med-Breakthrough B as the 'A's weren't working anymore. I expected at least a bit of hassle as my GP does not like me and pain medications. I handed her the paper and mentioned that I was switching them. She went in to her room to print them out and then came back to me in the hall. I was waiting for her to say that they would not switch them without an appointment but she actually just asked how many of the breakthrough meds that I normally get! She printed out the papers, my GP came out, looked at them, signed them and handed them to me without saying a word!
The only thing that sucked about the day is I came home and was telling my mom about it (she expected a 'fight' as well) and as soon as I told her the story she just looked at me and told me to go to bed. Apparently my eyes were black so she went and found me some benedryl and told me to take a few and get some sleep as I looked horrible! I did benedryl every four hours for a day and a half and finally the 'racoon eyes' were over. Still kinda shocked about the GP though! lol
Monday, May 30, 2011
Friday, May 20, 2011
Rheumatologist
The day after my lovely appointment with the OS at the knee clinic I get a phone call. I find out that it is my rheumatologist's office calling to say that the office will be closed until further notice due to an unforseen circumstance! This guy is the one that basically handles all my health issues and I was supposed to see at the beginning of the next week. I had already had a list going of what I needed to see him about and now he isn't there. It is not like him to do this so something serious had to have happened. However this is pretty depressing as he is the one that handles my knee. So it's not like I can even ask for a cortisone injection or look into Synvisc with him as he isnt there. Plus my pain meds aren't working well anymore so we have to swap them again and most likely up the dosage of them. I am also having a lot of problems with my hands and fingers that I don't know what to do about and am thinking about asking to get a cortisone shot in my shoulder joint as the bad nerve pain is coming back again.
Also I was approved for my ring splints and they will cover the entire cost! Except no one at the office noticed that it was from a company in the states so now that can't be done because they can't just reimburse me if I use my credit card, it is done through a voucher type of system. There is a company in Canada but I don't know how their measurements are done and would have to be measured for them. Problem - it would be my rheumy who has all the tools to do the measurements and well he just isnt there right now!!
After the two crappy appointments (internist and OS) and then this I am about to just say screw the doctors and screw all the pills. What is the point doing all this fighting if no one is there to actually help you? Oh so I call my GP's office and say I need to make an appoinment becaue my rheumy is away and she says the earliest I can get in is the 13th of June!!!! I said that wouldn't work because I only had a week and a half left of my pain killers and my rheumy is on a leave of absence. The squeezed me in for a 'chair visit' (sit in the hall with no real exam or questioning) to get my pills on the 30th but I still had to make the appointment for the 13th as I need those pain meds redone (if he will do them, he always wants me off them and not increasing them), I need a referal to a GI doctor (let's just say I have been having one sypmtom for years and never really worried about it but when I mentioned it to my mom she was quite concerned and wants me to get refered ASAP) and to go over my bloodwork and ask about thyroid as well and to ask about the SSRI's and autonomic issues. So now I am officialy on hold as I can do absolutly nothing until the 13th - and this isnt a doctor that can do much except normal family doctor types of things and referals!!
Also I was approved for my ring splints and they will cover the entire cost! Except no one at the office noticed that it was from a company in the states so now that can't be done because they can't just reimburse me if I use my credit card, it is done through a voucher type of system. There is a company in Canada but I don't know how their measurements are done and would have to be measured for them. Problem - it would be my rheumy who has all the tools to do the measurements and well he just isnt there right now!!
After the two crappy appointments (internist and OS) and then this I am about to just say screw the doctors and screw all the pills. What is the point doing all this fighting if no one is there to actually help you? Oh so I call my GP's office and say I need to make an appoinment becaue my rheumy is away and she says the earliest I can get in is the 13th of June!!!! I said that wouldn't work because I only had a week and a half left of my pain killers and my rheumy is on a leave of absence. The squeezed me in for a 'chair visit' (sit in the hall with no real exam or questioning) to get my pills on the 30th but I still had to make the appointment for the 13th as I need those pain meds redone (if he will do them, he always wants me off them and not increasing them), I need a referal to a GI doctor (let's just say I have been having one sypmtom for years and never really worried about it but when I mentioned it to my mom she was quite concerned and wants me to get refered ASAP) and to go over my bloodwork and ask about thyroid as well and to ask about the SSRI's and autonomic issues. So now I am officialy on hold as I can do absolutly nothing until the 13th - and this isnt a doctor that can do much except normal family doctor types of things and referals!!
Knee Appointment
Well it's almost been a week. I still end up so pissed off even thinking of the encounter I had with the doctor (and then after with my dad) but figure I should get this written out before I start forgetting important things.
So I was very hopeful of this appointment, as was my mom and we had already minorly talked over some issues that might come up with more knee surgery (sleeping arrangements and whatnot). We had to get up really early as it was one of the first appointments of the day and we live a little over an hour away. Got up and got dressed and packed (book for the trip, shorts for the appt etc) and headed off to Timmy's to get an Ice Cap before getting on the high way to the clinic.
So we get there and have to wait for a while (this is a busy clinic at a teaching hospital that also houses a physiotherapy center) before getting called back to the room. The nurse recognized me (not sure if from my first round of surgeries there or just this last month) and we got talking about my old OS Dr. F and how much crap he ended up going through and with her telling us that he isn't the Dr. F that we would remember anymore sadly. Dad left the room while I got in to shorts and comes in and says I am on the board as 'Stacey new knee', it took him a moment to realize it was just that it was a new knee case and not a new knee operation! I went through a pile of paperwork filling things out, what happened, what treatments have been used, surgeries etc. It took quite a long time to fill it out and to get all the details. Even had to ask dad a few questions as to what has been done.
Finally the fellow comes in. He asks what is going on and getting my history (note: he never picked up the questionaire I filled out). Three times he did an exam on my knee, have me lie down and played around with both legs would have me sit up and then think of something else and have my lie down again for him to check something. He also wanted to see the 'tricks' when he found out about the EDS. I kept it to the elbow, and the thumb to wrist trick and told him to what degree my knees hyperextended. I tell him that surprisingly I have lost a great deal of ROM since the injury and he then wants to see that so I have to lie down again. (note: going up and down like that just killed my lower back as I couldnt shift around to realign the lower spine). He kept asking me which was worse: 1) instability or 2) pain. However I could not get him to understand that yes the pain is bad but that I deal with chronic pain on a daily basis and that the most pressing issues is the instablitiy becuase it is messing up other joints. I tell him that I am still having to take breakthrough pain meds daily and that a prevously 3 month supply of breakthrough meds is only lasting for a month now (How else do you describe the severity of pain when you are in pain daily???). He goes over the bracing and physio route and even my dad spoke up at this point stating that they were both useless in my situation and that it was actually Dr. F that told me bracing was futile with my knee. It took a lot of time for him to get that my knee went out to the medial side and not the lateral side. That the instablity is the knee feeling like it is going out to the medial side. From out of no where he comes up with this 'would you rather' game. He finds a spot on my knee at the bottom to the lateral side and pushes down on it hard. He then goes would you rather this pain be gone or your knee stable??? I had no clue what he was even talking about! Again I had to state that I can handle pain, I do it daily it is the instablity that is the main problem. After a good 20 minutes he then leaves to go get the actually doctor.
A few minutes later I hear the fellow and Dr. L outside the door. First thing Dr. L says... "How long ago was the car accident?" I had to think for a minute as I was wondering if he was talking about the one I got into in 2003 (the clinic knew of this accident) until dad said that I hadn't been in a car accident. Then we realized that I said I dislocated while reaching to the backseat of the truck (no clue how they took that to be a car accident!). We get that settled then he asks again about what is going on (note: He didn't look at any of the paper work I had just filled out either). We went through everything again and then he did his own playing around with my legs and checking out the hypermobility in other joints then sits down. He kept asking if I was back to my 'normal' and not what a normal knee should feel like. I kept telling him no that I wasn't and that I was still in a lot of pain. I won't go in to detail about all he said as honestly after one specific comment I just about lost it. He then states that since I had already had three operations on the lateral side of my right knee that it was pointless to do any more work in there and that nothing else would work. He kept stating 'with your condition' things are just going to get loose again anyways so what was the point. Here are a few of the "statments" that stand out to me - and my reaction outloud and (what I thought in my head):
"You just need to strengthen the muscles of your knee" - I have been assessed and told that my muscles are all as strong as they need to be and that too much strengthening actually leads to the same problems of instability because the muscles are trying too hard (I refuse to go down the physio route again unless it is post-op!) "Well who said that" - two physiotherapists and my rheumatologist
"Have you tried bracing?" - Yes, bought the one suggested last time and can not wear it as it causes more problems than it's worth. I have been told that for my knee, braces just won't work. (Do you really think I would be going this far down the surgeon path if bracing fixed it?) "Who told you that?" - Dr. F (Dr. F is my old OS and who the entire knee clinic is named after)
"You need to stop the mindset that you are disabled" - (didn't answer this one but was pissed and just about left the office. I wish I had of said my family doctor, rheumatologist, genticist, physiotherapist and 4 different government agencies have all told me I am disabled. It takes a long time to accept that fact and I don't appreciate being told that my belief that I am disabled is affecting my health in a negatice way)
"You have to think like an abled body person" - *eye roll* (If I was an abled body person I wouldn't be in this office, I would be out riding my bike with my nephew or taking him to the park to kick a ball around etc)
"What do you want me to do?" - Dr. F had told me that surgery to re-align my MCL, LCL and patellar tendon would be the most helpful to work at getting that balance to keep my knee properly alligned (You are the surgeon, not me, I just want you to do something!) "Well Dr. F isn't a surgeon" (note: Dr. F in this statement is the one I saw a few weeks ago, not my old OS that I loved!)
He then basically just stopped, said nothing could be done, I need to strengthen my muscles and that surgery wouldn't be done as too much has been done laterally already that he doesnt want to mess around with it anymore (note: Me and everyone I have asked all agree that the fact that so much has already been done to the lateral side is more of a reason to go in and do a clean out and check that everything is working). Then he goes "Okay?" and I say "No" and he goes "Well I can't do anything" and leaves the room. At this point I am already in tears (and again now just writing this up) and I look at dad and he just says we will talk in the truck and then leaves so I can get my pants back on. I get dressed and go out to find dad and the nurse / receptionist asks if I need to make another appointment and I said "No I will not be seeing him again, I don't appreciate being insulted at a doctors appointment." Then came something that was almost just as bad.
I finally find my dad and we go back to the truck. He then comes up with this brilliant plan about how we are going to fix my knee - He is going to wrap it up real good and then him and I are going to go on a walk each night, even if only to the end of the driveway, we are going to go walking each night. I just blew up at him at this point. It was just like a huge slap in the face. So I aksed him what about both hips, the left knee and the left ankle? He just goes we need to build up strength so I say for the millionth time that day that I refuse to sacrifice 4 otherwise good joints for one that is beyond screwed up anyways and that it would make more sense to start looking into wheelchairs. And that is when I get the wall of silence. We had a few stops to make before heading home but on the way home I ask where do you go after the clinic I just went to (in terms of finding treatment) and he goes 'Nowhere, we're done they can't help you' which caused another wonderful bout of crying.
Well that's the appointment finally written up. I have a bunch more of stuff to get up but will put them in seperate posts.
So I was very hopeful of this appointment, as was my mom and we had already minorly talked over some issues that might come up with more knee surgery (sleeping arrangements and whatnot). We had to get up really early as it was one of the first appointments of the day and we live a little over an hour away. Got up and got dressed and packed (book for the trip, shorts for the appt etc) and headed off to Timmy's to get an Ice Cap before getting on the high way to the clinic.
So we get there and have to wait for a while (this is a busy clinic at a teaching hospital that also houses a physiotherapy center) before getting called back to the room. The nurse recognized me (not sure if from my first round of surgeries there or just this last month) and we got talking about my old OS Dr. F and how much crap he ended up going through and with her telling us that he isn't the Dr. F that we would remember anymore sadly. Dad left the room while I got in to shorts and comes in and says I am on the board as 'Stacey new knee', it took him a moment to realize it was just that it was a new knee case and not a new knee operation! I went through a pile of paperwork filling things out, what happened, what treatments have been used, surgeries etc. It took quite a long time to fill it out and to get all the details. Even had to ask dad a few questions as to what has been done.
Finally the fellow comes in. He asks what is going on and getting my history (note: he never picked up the questionaire I filled out). Three times he did an exam on my knee, have me lie down and played around with both legs would have me sit up and then think of something else and have my lie down again for him to check something. He also wanted to see the 'tricks' when he found out about the EDS. I kept it to the elbow, and the thumb to wrist trick and told him to what degree my knees hyperextended. I tell him that surprisingly I have lost a great deal of ROM since the injury and he then wants to see that so I have to lie down again. (note: going up and down like that just killed my lower back as I couldnt shift around to realign the lower spine). He kept asking me which was worse: 1) instability or 2) pain. However I could not get him to understand that yes the pain is bad but that I deal with chronic pain on a daily basis and that the most pressing issues is the instablitiy becuase it is messing up other joints. I tell him that I am still having to take breakthrough pain meds daily and that a prevously 3 month supply of breakthrough meds is only lasting for a month now (How else do you describe the severity of pain when you are in pain daily???). He goes over the bracing and physio route and even my dad spoke up at this point stating that they were both useless in my situation and that it was actually Dr. F that told me bracing was futile with my knee. It took a lot of time for him to get that my knee went out to the medial side and not the lateral side. That the instablity is the knee feeling like it is going out to the medial side. From out of no where he comes up with this 'would you rather' game. He finds a spot on my knee at the bottom to the lateral side and pushes down on it hard. He then goes would you rather this pain be gone or your knee stable??? I had no clue what he was even talking about! Again I had to state that I can handle pain, I do it daily it is the instablity that is the main problem. After a good 20 minutes he then leaves to go get the actually doctor.
A few minutes later I hear the fellow and Dr. L outside the door. First thing Dr. L says... "How long ago was the car accident?" I had to think for a minute as I was wondering if he was talking about the one I got into in 2003 (the clinic knew of this accident) until dad said that I hadn't been in a car accident. Then we realized that I said I dislocated while reaching to the backseat of the truck (no clue how they took that to be a car accident!). We get that settled then he asks again about what is going on (note: He didn't look at any of the paper work I had just filled out either). We went through everything again and then he did his own playing around with my legs and checking out the hypermobility in other joints then sits down. He kept asking if I was back to my 'normal' and not what a normal knee should feel like. I kept telling him no that I wasn't and that I was still in a lot of pain. I won't go in to detail about all he said as honestly after one specific comment I just about lost it. He then states that since I had already had three operations on the lateral side of my right knee that it was pointless to do any more work in there and that nothing else would work. He kept stating 'with your condition' things are just going to get loose again anyways so what was the point. Here are a few of the "statments" that stand out to me - and my reaction outloud and (what I thought in my head):
"You just need to strengthen the muscles of your knee" - I have been assessed and told that my muscles are all as strong as they need to be and that too much strengthening actually leads to the same problems of instability because the muscles are trying too hard (I refuse to go down the physio route again unless it is post-op!) "Well who said that" - two physiotherapists and my rheumatologist
"Have you tried bracing?" - Yes, bought the one suggested last time and can not wear it as it causes more problems than it's worth. I have been told that for my knee, braces just won't work. (Do you really think I would be going this far down the surgeon path if bracing fixed it?) "Who told you that?" - Dr. F (Dr. F is my old OS and who the entire knee clinic is named after)
"You need to stop the mindset that you are disabled" - (didn't answer this one but was pissed and just about left the office. I wish I had of said my family doctor, rheumatologist, genticist, physiotherapist and 4 different government agencies have all told me I am disabled. It takes a long time to accept that fact and I don't appreciate being told that my belief that I am disabled is affecting my health in a negatice way)
"You have to think like an abled body person" - *eye roll* (If I was an abled body person I wouldn't be in this office, I would be out riding my bike with my nephew or taking him to the park to kick a ball around etc)
"What do you want me to do?" - Dr. F had told me that surgery to re-align my MCL, LCL and patellar tendon would be the most helpful to work at getting that balance to keep my knee properly alligned (You are the surgeon, not me, I just want you to do something!) "Well Dr. F isn't a surgeon" (note: Dr. F in this statement is the one I saw a few weeks ago, not my old OS that I loved!)
He then basically just stopped, said nothing could be done, I need to strengthen my muscles and that surgery wouldn't be done as too much has been done laterally already that he doesnt want to mess around with it anymore (note: Me and everyone I have asked all agree that the fact that so much has already been done to the lateral side is more of a reason to go in and do a clean out and check that everything is working). Then he goes "Okay?" and I say "No" and he goes "Well I can't do anything" and leaves the room. At this point I am already in tears (and again now just writing this up) and I look at dad and he just says we will talk in the truck and then leaves so I can get my pants back on. I get dressed and go out to find dad and the nurse / receptionist asks if I need to make another appointment and I said "No I will not be seeing him again, I don't appreciate being insulted at a doctors appointment." Then came something that was almost just as bad.
I finally find my dad and we go back to the truck. He then comes up with this brilliant plan about how we are going to fix my knee - He is going to wrap it up real good and then him and I are going to go on a walk each night, even if only to the end of the driveway, we are going to go walking each night. I just blew up at him at this point. It was just like a huge slap in the face. So I aksed him what about both hips, the left knee and the left ankle? He just goes we need to build up strength so I say for the millionth time that day that I refuse to sacrifice 4 otherwise good joints for one that is beyond screwed up anyways and that it would make more sense to start looking into wheelchairs. And that is when I get the wall of silence. We had a few stops to make before heading home but on the way home I ask where do you go after the clinic I just went to (in terms of finding treatment) and he goes 'Nowhere, we're done they can't help you' which caused another wonderful bout of crying.
Well that's the appointment finally written up. I have a bunch more of stuff to get up but will put them in seperate posts.
Friday, May 13, 2011
Recap of the week
It seems this week that it really is giving me one good experience with one bad experience to even it out. Unfortunatly the bad are out weighing the good pretty heavily. So here are the bad and good of the week:
Thursday (May 5th):
Bad - My internist believes that most of my problems right now are from me being depressed and didn't really have anything to tell us as to what to try to get rid of most of the problems.
Good - Was able to go shopping with mom and picked up a bunch of books to read.
Friday (May 6th):
Bad - Find out that the plans I had made for K for the next day were cancelled as my brother and his gf were coming out to see him (was told this at 11pm).
Good - Parents had a cheque come in regarding me and disability status that was back dated so got a nice chunk of change to put towards my loan which should leave it paid off within the next two years instead of 5.
Saturday (May 7th):
Bad - Brother and GF came out for a very short period of time which ended up messing up basically the entire day for K and myself.
Good - Made the best of it and hurried in to town with K to go and see 'Rio' (in 3D) and do some shopping.
Sunday (May 8th):
Bad - Not feeling good at all and stressing out about appointments.
Good - Actually got recognized for once on Mother's day with a card and gift from K.
Monday (May 9th):
Bad - Got in to a huge fight with mom about K's karate and my brothers involvement with K, hoping I actually got through to her about my absolutly not trusting brother and feeling unsafe and on edge when he is here.
Good - Found out K would be grading on friday for his Blue Advanced belt.
Tuesday (May 10th):
Bad - Horrible OS appt, major frustration and some very unhelpful comments from my dad
Good - Was able to go to karate with K and he got his third stripe, we then went out and each of us got some Webkinz to open up all the areas for all of us
Wednesday (May 11th):
Bad - Got a call from my Rheumy's office letting me know that they will be closed until further notice for some reason (unforseen circumstances, hopefully my rheumy is okay!!) Then had to take Shaggy to the vet, he had a major panic attack when the lady brought out the mussle so I aborted that task about getting his foot checked where his nail came out. Plus a nice $165 bill.
Good - Got a letter from my ODSP worker letting me know that they will pay the entire $375 for me to get my ring splints (both little fingers and one thumb), I just have to get in touch with her to find out how I actually go about doing so.
Thursday (May 12th):
Bad - Had to get bloodwork done then got pretty sick
Good - They were able to get blood on the first stick and pretty easily (for me) then I was able to sleep it all off and start feeling better.
Friday (May 13th):
Bad - Some how got in to an arguement with my parents about K's birthday party when I asked what was going on and questioned a few small details then mom flipped out about 'how nothing they do can please me anymore'. Really have no clue where that came from!
Good - K did great at grading and now has his Blue Advanced Belt! This is his 10th belth since starting, only 5 more before starting the black belt process!
I will get around to posting about the appointment I had. It still is really hard to think about and I am at such a loss with my medical health right now, more than I have ever been. Internist think's its all down to depression, OS was no help or suggestions and no surgery will be done and my Rheumy is out of the picture for now (the office is closed until further notice)
Thursday (May 5th):
Bad - My internist believes that most of my problems right now are from me being depressed and didn't really have anything to tell us as to what to try to get rid of most of the problems.
Good - Was able to go shopping with mom and picked up a bunch of books to read.
Friday (May 6th):
Bad - Find out that the plans I had made for K for the next day were cancelled as my brother and his gf were coming out to see him (was told this at 11pm).
Good - Parents had a cheque come in regarding me and disability status that was back dated so got a nice chunk of change to put towards my loan which should leave it paid off within the next two years instead of 5.
Saturday (May 7th):
Bad - Brother and GF came out for a very short period of time which ended up messing up basically the entire day for K and myself.
Good - Made the best of it and hurried in to town with K to go and see 'Rio' (in 3D) and do some shopping.
Sunday (May 8th):
Bad - Not feeling good at all and stressing out about appointments.
Good - Actually got recognized for once on Mother's day with a card and gift from K.
Monday (May 9th):
Bad - Got in to a huge fight with mom about K's karate and my brothers involvement with K, hoping I actually got through to her about my absolutly not trusting brother and feeling unsafe and on edge when he is here.
Good - Found out K would be grading on friday for his Blue Advanced belt.
Tuesday (May 10th):
Bad - Horrible OS appt, major frustration and some very unhelpful comments from my dad
Good - Was able to go to karate with K and he got his third stripe, we then went out and each of us got some Webkinz to open up all the areas for all of us
Wednesday (May 11th):
Bad - Got a call from my Rheumy's office letting me know that they will be closed until further notice for some reason (unforseen circumstances, hopefully my rheumy is okay!!) Then had to take Shaggy to the vet, he had a major panic attack when the lady brought out the mussle so I aborted that task about getting his foot checked where his nail came out. Plus a nice $165 bill.
Good - Got a letter from my ODSP worker letting me know that they will pay the entire $375 for me to get my ring splints (both little fingers and one thumb), I just have to get in touch with her to find out how I actually go about doing so.
Thursday (May 12th):
Bad - Had to get bloodwork done then got pretty sick
Good - They were able to get blood on the first stick and pretty easily (for me) then I was able to sleep it all off and start feeling better.
Friday (May 13th):
Bad - Some how got in to an arguement with my parents about K's birthday party when I asked what was going on and questioned a few small details then mom flipped out about 'how nothing they do can please me anymore'. Really have no clue where that came from!
Good - K did great at grading and now has his Blue Advanced Belt! This is his 10th belth since starting, only 5 more before starting the black belt process!
I will get around to posting about the appointment I had. It still is really hard to think about and I am at such a loss with my medical health right now, more than I have ever been. Internist think's its all down to depression, OS was no help or suggestions and no surgery will be done and my Rheumy is out of the picture for now (the office is closed until further notice)
Tuesday, May 10, 2011
OS Appointment - Not Happy
I saw the OS at the knee clinic today and things could not have gone worse. At this point even thinking about it ends in me crying my eyes out. Also I have taken 6 of my pain killers today while I normally only take one or two max. And I still will need a dose before I go to bed. This was one of the worst appointments I have had and to top it off I even had the guy insult me! Top it off dad figures that nothing can be done so we should go out on walks every night to help build my strength up (even though I have had my rheumy and a physiotherapist tell me that my muscles are strong enough and much more strengthening can actually cause just as many problems and my mom just isn't saying or suggesting anything. Will post more, probably when the sadness and depression move on to become anger so it can become a rant and not a depressing whine.
Sunday, May 8, 2011
Cardiologist / Internist Appointment Outcome
I am a little distracted by personal issues tonight and was feeling sick last night so going to post how the appointment went yesterday. I may have to come back and edit it as I remember things later on, as I said, not really having a good night (Nothing is wrong, just emotional wrongnesss and frustration levels are high).
So I had my appt with Dr. C yesterday. I did a post about all the things that had happened since I had last seen her (that post is here). Going to kinda follow that post and address what she said about the things I mentioned and then go into what she felt was the biggest issues I am dealing with (not impressed!!!!!)
1) MRI & Neuro - Was happy to know he agreed on the autonomic dysfunction but agreed with us that even though he told me it was just excessive sweating in normal sweat areas (that's why I don't sweat below the waist) she thought it was B.S. as well as that just doenst make sense. She is glad that my herniated disc isn't at surgery level and that I had a basically normal flow of CSF. Not much else said about that.
2) Medication & Sweats - She was very happy to hear that I was able to go for two months without sweats. However she agrees that most likely I grew tolerant to the medication really quickly and that we potentially could try swapping in one medication in the class with another medication in the class but it wouldn't be as seamless as the pain medications go. I would have to take the medication, taper up to the dose that is required then when it started to stop working I would have to taper back down to zero before starting the path with another medication. We did have some 'conflicts' in dealing with my use of this medication but I will get to that at the end as it ties in to her version of 'the big picture' (can you sense sarcasim?).
3 & 4) Osteoporosis & Knee Issues - Didn't really affect her, she just asked when I do my scans to watch for the osteoporosis and I told her I do a full DEXA and bone scan every two years through Dr. W. The knee issue doesn't really apply to her (except if I have surgery, more on that on it's point).
5) Cardiac Work-Up - NO mitral valve prolapse which is really really good news! She also made very sure to inform me that they are starting to realize that a high pulse rate (sinus tachycardia) in and of itself is not harmfull to the actual heart. This means that the high pulse is not doing any damage to my heart or muscles and that the only reason I need medicated for it is because of the symptoms I show when not on a beta blocker. She asked what tests I need regarding the heart and how often they are recommended so we are going to continue with yearly echocardiogram and EKG's with the occasional every 2 or 3 year with a holter monitor (unless I come up with other symptoms of course). She refilled my beta blocker medication, was glad it is working better and they will contact me next year to set up my annual check-up
6) Dental Surgery - I told her all the story about dental surgery, them having me take a beta blocker right before surgery and the major blood pressure drops I was having and then tentativly said that I while going through it I basically took blood pressure readings a few times a day and based my dosage on that. She said that while not usually advised for most patients (messing with their heart medications that is) that she feels I did everything perfectly and told me that I can adjust those meds if needed. She said I had that reaction because I would have been fasting for so long which would lead to bad dehydration, and the anesthetic and stress (causing the autonomic issues to go into overdrive) in itself didn't help the matter. She then told me that if / when I have surgery again I am to not take my beta blockers that day and to just keep a watch on my blood pressure and heart rate to juggle what dose I am needing. Basically I can go with no beta blocker, I would just have the bad issues of lightheadedness, shakeyness and close fainting spells. She explained it all really well - why the beta blockers aren't good with surgery - but I can't really remember what she exactly said, it just made a lot of sense and mom and I were happy to get her opinion on it (in case I need knee surgery :S )
And on to the last one, the one that is really bothering me and has taken me a few days to come back and write it up I am so upset about it.
7) Thyroid - This one was the very trickiest of them all by far. When I brought it up she immediatly shot it down saying that my numbers were fine so that is what matteres. My mom even brought up that she had heard about if your number is higher than 2.5 and you have symptoms that treatment might help. She just said no and that my number was fine. She asked why I thought it was thyroid so I told her the weight gain, thinning hair, trouble swallowing etc and she still shot me down. I was frustrated at this point and was trying to sort out my words and then she comes out with she is very worried about me because my face is different than last time (facial expressions) and she thinks I am seriously depressed and that the weight, hair and other issues can all be from depression. You get depressed so your body doesnt want to eat so it makes things hard for you to swallow (huh?) She starts asking about my medications and noticed that I had crossed one medication off the list (It is a SSRI that we tried for the sweating) and really got into me as to how I stopped it, over what period of time, etc. I tell her that I stopped it a week ago and basically took it as normal and then a week of every other day. She just about flipped and said that that was not healthy and is probably why I am so depressed right now. I told her I hadn't seen or felt any changes at all so she goes 'Can I ask that from your Mom?', I said yes and mom backed me up that she saw no changes at all from the medication being stopped but does admit I do get depressed at times (I don't deny it but a doctor who won't listen to me doesnt help). She wants me back on the SSRI (even though she also admitted she knew nothing about that type of medication) so that at the very least I can taper off it properly. She then tells me she want's me to look into if swallowing problems are with EDS but I made one point on that and she backed right off thankfully. She is adamant that my thyoid is perfectly normal even after I made my case, my mom made her case and we went over all the issues I am having that don't fit in autonomic dysfunction or EDS but seem to fit very nicely into a set of symptoms of a disorder that is very prevalant in my family. She just kept going back and back to me being depressed and needing something for that and how worried she is about me. She told me that the thyroid issues that I am thinking about (low thyroid) will not cause swallowing issues because it is obvious I do not have a goiter. For some reason she kept going on at how sweating isn't a sign of thyroid even though I told her that I never thought it was and I knew it was completley unrelated at all. She did finally relent and ordered a repeat for my three thyroid levels and suggested I get a barium swallowing test done.
When we came out of the appointment I was pissed off and felt ambushed. She didn't seem to listen to me at all or provide any helpfull suggestions. Okay so if she doesn't think it's the thyroid than what does she think it is? What is the next step to find out why? What is causing all the other issues? She seems to really want me on a dose of anti-depressants and I flat out refuse. I told her that the only reason I was taking the SSRI was for the sweating and the dose that I was at isn't even recognized as theraputic for depression (even though she says that it was working and me stopping it lead me to the serious depression I have now). I just personally work very hard at overcoming depressing times to get through it without having to medicate myself. I just don't really believe in being on an anit-depressent long term for something that actually has a cause (try having EDS and not going through bouts of depression) and not going to get better. I have my own ways to 'pick me up' and get through it and I don't want drugs for it. Thankfully my mom agrees with me on that part and also isn't comfortable about me taking a medication daily for depression. Don't get me wrong they do have their time and place but they have never been meant to be taken for years at a time!
So the plan - Mom and I still believe that the thyroid is part of the newest puzzle. I am going to go and get my bloodwork done and then see my family doctor. I will see what he says and get his point of view on the issue. If nothing shows in the bloodwork (which it probably won't as I don't test like a normal person) than I will take things in my own hands. There is a nutrition store in town that sells a thyroid supplement that I will go in and try taking for a month or so and see what happens. I am used to doctor's disagreeing with me, it is a common occurance (more realisticly happening than doctors actually agreeing with me) but at least other doctors give me a rational answer as to why they don't think that is the problem and / or offer suggestions and not just keep repeating 'your numbers are fine'.
So I had my appt with Dr. C yesterday. I did a post about all the things that had happened since I had last seen her (that post is here). Going to kinda follow that post and address what she said about the things I mentioned and then go into what she felt was the biggest issues I am dealing with (not impressed!!!!!)
1) MRI & Neuro - Was happy to know he agreed on the autonomic dysfunction but agreed with us that even though he told me it was just excessive sweating in normal sweat areas (that's why I don't sweat below the waist) she thought it was B.S. as well as that just doenst make sense. She is glad that my herniated disc isn't at surgery level and that I had a basically normal flow of CSF. Not much else said about that.
2) Medication & Sweats - She was very happy to hear that I was able to go for two months without sweats. However she agrees that most likely I grew tolerant to the medication really quickly and that we potentially could try swapping in one medication in the class with another medication in the class but it wouldn't be as seamless as the pain medications go. I would have to take the medication, taper up to the dose that is required then when it started to stop working I would have to taper back down to zero before starting the path with another medication. We did have some 'conflicts' in dealing with my use of this medication but I will get to that at the end as it ties in to her version of 'the big picture' (can you sense sarcasim?).
3 & 4) Osteoporosis & Knee Issues - Didn't really affect her, she just asked when I do my scans to watch for the osteoporosis and I told her I do a full DEXA and bone scan every two years through Dr. W. The knee issue doesn't really apply to her (except if I have surgery, more on that on it's point).
5) Cardiac Work-Up - NO mitral valve prolapse which is really really good news! She also made very sure to inform me that they are starting to realize that a high pulse rate (sinus tachycardia) in and of itself is not harmfull to the actual heart. This means that the high pulse is not doing any damage to my heart or muscles and that the only reason I need medicated for it is because of the symptoms I show when not on a beta blocker. She asked what tests I need regarding the heart and how often they are recommended so we are going to continue with yearly echocardiogram and EKG's with the occasional every 2 or 3 year with a holter monitor (unless I come up with other symptoms of course). She refilled my beta blocker medication, was glad it is working better and they will contact me next year to set up my annual check-up
6) Dental Surgery - I told her all the story about dental surgery, them having me take a beta blocker right before surgery and the major blood pressure drops I was having and then tentativly said that I while going through it I basically took blood pressure readings a few times a day and based my dosage on that. She said that while not usually advised for most patients (messing with their heart medications that is) that she feels I did everything perfectly and told me that I can adjust those meds if needed. She said I had that reaction because I would have been fasting for so long which would lead to bad dehydration, and the anesthetic and stress (causing the autonomic issues to go into overdrive) in itself didn't help the matter. She then told me that if / when I have surgery again I am to not take my beta blockers that day and to just keep a watch on my blood pressure and heart rate to juggle what dose I am needing. Basically I can go with no beta blocker, I would just have the bad issues of lightheadedness, shakeyness and close fainting spells. She explained it all really well - why the beta blockers aren't good with surgery - but I can't really remember what she exactly said, it just made a lot of sense and mom and I were happy to get her opinion on it (in case I need knee surgery :S )
And on to the last one, the one that is really bothering me and has taken me a few days to come back and write it up I am so upset about it.
7) Thyroid - This one was the very trickiest of them all by far. When I brought it up she immediatly shot it down saying that my numbers were fine so that is what matteres. My mom even brought up that she had heard about if your number is higher than 2.5 and you have symptoms that treatment might help. She just said no and that my number was fine. She asked why I thought it was thyroid so I told her the weight gain, thinning hair, trouble swallowing etc and she still shot me down. I was frustrated at this point and was trying to sort out my words and then she comes out with she is very worried about me because my face is different than last time (facial expressions) and she thinks I am seriously depressed and that the weight, hair and other issues can all be from depression. You get depressed so your body doesnt want to eat so it makes things hard for you to swallow (huh?) She starts asking about my medications and noticed that I had crossed one medication off the list (It is a SSRI that we tried for the sweating) and really got into me as to how I stopped it, over what period of time, etc. I tell her that I stopped it a week ago and basically took it as normal and then a week of every other day. She just about flipped and said that that was not healthy and is probably why I am so depressed right now. I told her I hadn't seen or felt any changes at all so she goes 'Can I ask that from your Mom?', I said yes and mom backed me up that she saw no changes at all from the medication being stopped but does admit I do get depressed at times (I don't deny it but a doctor who won't listen to me doesnt help). She wants me back on the SSRI (even though she also admitted she knew nothing about that type of medication) so that at the very least I can taper off it properly. She then tells me she want's me to look into if swallowing problems are with EDS but I made one point on that and she backed right off thankfully. She is adamant that my thyoid is perfectly normal even after I made my case, my mom made her case and we went over all the issues I am having that don't fit in autonomic dysfunction or EDS but seem to fit very nicely into a set of symptoms of a disorder that is very prevalant in my family. She just kept going back and back to me being depressed and needing something for that and how worried she is about me. She told me that the thyroid issues that I am thinking about (low thyroid) will not cause swallowing issues because it is obvious I do not have a goiter. For some reason she kept going on at how sweating isn't a sign of thyroid even though I told her that I never thought it was and I knew it was completley unrelated at all. She did finally relent and ordered a repeat for my three thyroid levels and suggested I get a barium swallowing test done.
When we came out of the appointment I was pissed off and felt ambushed. She didn't seem to listen to me at all or provide any helpfull suggestions. Okay so if she doesn't think it's the thyroid than what does she think it is? What is the next step to find out why? What is causing all the other issues? She seems to really want me on a dose of anti-depressants and I flat out refuse. I told her that the only reason I was taking the SSRI was for the sweating and the dose that I was at isn't even recognized as theraputic for depression (even though she says that it was working and me stopping it lead me to the serious depression I have now). I just personally work very hard at overcoming depressing times to get through it without having to medicate myself. I just don't really believe in being on an anit-depressent long term for something that actually has a cause (try having EDS and not going through bouts of depression) and not going to get better. I have my own ways to 'pick me up' and get through it and I don't want drugs for it. Thankfully my mom agrees with me on that part and also isn't comfortable about me taking a medication daily for depression. Don't get me wrong they do have their time and place but they have never been meant to be taken for years at a time!
So the plan - Mom and I still believe that the thyroid is part of the newest puzzle. I am going to go and get my bloodwork done and then see my family doctor. I will see what he says and get his point of view on the issue. If nothing shows in the bloodwork (which it probably won't as I don't test like a normal person) than I will take things in my own hands. There is a nutrition store in town that sells a thyroid supplement that I will go in and try taking for a month or so and see what happens. I am used to doctor's disagreeing with me, it is a common occurance (more realisticly happening than doctors actually agreeing with me) but at least other doctors give me a rational answer as to why they don't think that is the problem and / or offer suggestions and not just keep repeating 'your numbers are fine'.
Saturday, May 7, 2011
Post coming
Just wanted to apologize for not having an update yet about how my appointment with my cardiologist / internist went. I have most of it written up but am having a problem finishing it off as it really upset me and I am trying to figure the best way to write it up and get it out there. Should be up tomorrow or monday (as I have to go to my knee appointment on tuesday!)
Wednesday, May 4, 2011
Internist / Cardiologist appointment tomorrow
This will be the first time I see this doctor since last august, since then:
1) Had an MRI and saw a neurologist who says there is no structural reason for my problems and that my herniated disc is not operable at this point. Had no suggestions except to see about getting some GI testing done because of the swallowing problems that I have.
2) Started medication to regulate sweating as a result of autonomic dysfunction. Had it last for two months (4 months after starting) and have since stopped the medication as the sweating came back full blown so I didn't want to take medications that I don't need / don't work
3) Diagnosed with osteoporosis (well osteopenia technically but my rheumy calls it full osteoporosis because of my age and the fairly rapid onset) and started perscription medications and supplements for this problem.
4) Had a 'major' knee injury and will be having a surgical consult next tuesday (yikes!). Also found out how structurally damaged my left knee actually is. This has also lead to more pain and instability in my hips and ankles.
5) Had my full annual cardiac work-up, need to discuss the results with her. Find out if I actually do or do not have mitral valve prolapse.
6) Had dental surgery (full general anesthetic) and then had some adverse reactions regarding my heart (blood pressure very low, heart rate very high). Need to figure out what could be done to prevent this in following surgeries.
7) Mom and I believe I have low thyroid causing lots of issues going on. I have gained 20-25lbs since I last saw her with no change in diet or activity level, my exhaustion levels and muscle weaknesses are getting worse, I have a lot of problems swallowing food and frequently lose my voice, and my hair is thinning and falling out pretty quickly the last year or so. These are just a few of the more main things that we have noticed just day in and day out. My levels show I am normal if you go by the '5' mark but show low thyroid if you go by the '2.5' mark.
So it should be an interesting appointment! The appointment is at 3:30 and we have had to make arrangements with my dad so he can get K and get him fed and to karate. I am hoping to make karate tomorrow (as long as my brother will not be there) just don't want to push it lol. Thankfully K had in his school planner that a math sheet he brought home he had to do #1-5 tonight and #6-10 tomorrow and we just flew threw it all so he won't have homework tomorrow night.
Well I am off here and going to go write up a post that I may or may not actually post. I will have to see.
1) Had an MRI and saw a neurologist who says there is no structural reason for my problems and that my herniated disc is not operable at this point. Had no suggestions except to see about getting some GI testing done because of the swallowing problems that I have.
2) Started medication to regulate sweating as a result of autonomic dysfunction. Had it last for two months (4 months after starting) and have since stopped the medication as the sweating came back full blown so I didn't want to take medications that I don't need / don't work
3) Diagnosed with osteoporosis (well osteopenia technically but my rheumy calls it full osteoporosis because of my age and the fairly rapid onset) and started perscription medications and supplements for this problem.
4) Had a 'major' knee injury and will be having a surgical consult next tuesday (yikes!). Also found out how structurally damaged my left knee actually is. This has also lead to more pain and instability in my hips and ankles.
5) Had my full annual cardiac work-up, need to discuss the results with her. Find out if I actually do or do not have mitral valve prolapse.
6) Had dental surgery (full general anesthetic) and then had some adverse reactions regarding my heart (blood pressure very low, heart rate very high). Need to figure out what could be done to prevent this in following surgeries.
7) Mom and I believe I have low thyroid causing lots of issues going on. I have gained 20-25lbs since I last saw her with no change in diet or activity level, my exhaustion levels and muscle weaknesses are getting worse, I have a lot of problems swallowing food and frequently lose my voice, and my hair is thinning and falling out pretty quickly the last year or so. These are just a few of the more main things that we have noticed just day in and day out. My levels show I am normal if you go by the '5' mark but show low thyroid if you go by the '2.5' mark.
So it should be an interesting appointment! The appointment is at 3:30 and we have had to make arrangements with my dad so he can get K and get him fed and to karate. I am hoping to make karate tomorrow (as long as my brother will not be there) just don't want to push it lol. Thankfully K had in his school planner that a math sheet he brought home he had to do #1-5 tonight and #6-10 tomorrow and we just flew threw it all so he won't have homework tomorrow night.
Well I am off here and going to go write up a post that I may or may not actually post. I will have to see.
Sunday, May 1, 2011
Low Thyroid? My Mom?!?!?!
This is kind of a continuation of the other day's post. It was getting so long though that I figured this topic deserved a post of it's own. However, it is very late and I am very tired so I can't make any promises that what this blog post says makes much sense or that I have not repeated myself a million times. Happy Reading lol
The other day at supper mom comes out with this. "On [insert show here] today they said that to have low thyroid your [she couldn't remember but it's the TSH] number has to be less than 5 before medications. But this lady was saying that any number under 2.5 was actually low thyroid and should be looked into if you have symptoms of it". I just said 'Oh, really?' to see where she was going with this. She then suggested that I go and find my last bloodwork and look at the numbers "Just to see". She told me that they listed off a bunch of the 'warning signs' of low thyroid (thinning and losing hair - check, weight gain not able to be shifted - check, extreme fatigue - check, tachycardia - check, etc) and that it seemed to fit a lot of what was going on with me. I was dumbstruck!!
When we started the whole sweating issue path I originally was 99.9% sure that I had low thyroid. It is very prevelant in the family, my grandmother is at all of us girls to have our levels checked frequently and she always says I must have low thyroid just because how I appear when visiting her, I have also had a friend of the family who has thyroid issues say that I had a textbook case of it. I have had the hair and weight issues more increasingly over the year and it just seemed to answer a bunch of questions. I wake up most days with hoarseness and it can come on at any time for not reason, I have also been having more and more issues with swallowing. Most meats I can not get down unless having a large drink of water to help it down. I have asked to have my thyroid levels measured countless times and am always told that they are normal. I even went to my first internist appointment expecting to come out with a diagnosis of hypothyroidism and given medications and be on my way. Well she also said my levels were normal and not the cause. So at that point I dropped it and gave up on it figuring all these doctors (3 different doctors) couldn't be wrong and I must be mistaken and mom also dropped it saying it wasnt the problem and we (I) needed to move on. So when she brought up this talk show and what the person said and then told me to go check my levels, I was stunned!
I went down and found levels from a few years ago that showed my levels at just slightly above 2.5 and then my labwork from the massive work-up done last year and my numbers were at a 3.3! So not only are they above the 2.5 level for being low, they have also increased in the few short years that had past! Mom mentioned that they had suggested taking Viatmin C, Vitamin D and Zinc to help. Well I already take all of those but I have increased my Vitamin D level to see if that helps. Unfortunatly we don't know what else could help as it seems like a medication problem, not a vitamin problem. I go to see my internist on thursday and mom wants to bring it up and at least get my levels checked again to see if they are going up or staying steady. We also want to tell her how symptomatic I am and hope that she will agree to trying a very low dose of medication. We all know that us EDSer's don't test 'normal'. You can't take an EDSer's test result and compare it to a normal person's result. You have to compare that result with previous results that that person has had. That is why it is so important for us EDSers to get baseline tests of EVERYTHING pretty early in our health journey. If my internist does not agree about trying it I may ask my GP about it. He is usually pretty good about me trying things if I have a good solid reason behind wanting to try it. And if that doesnt work mom and I are going to go into the health food store as we think we heard that they have a supplement there that is specifically for thyroid health. If I can't get a doctor behind me than I am going to try it and see if it helps, and if it does that is just one more thing I can take to the doctor to show that some of my issues may be thyroid related!
Here is a breif list of symptom from (http://www.medicinenet.com/hypothyroidism/page3.htm):
The other day at supper mom comes out with this. "On [insert show here] today they said that to have low thyroid your [she couldn't remember but it's the TSH] number has to be less than 5 before medications. But this lady was saying that any number under 2.5 was actually low thyroid and should be looked into if you have symptoms of it". I just said 'Oh, really?' to see where she was going with this. She then suggested that I go and find my last bloodwork and look at the numbers "Just to see". She told me that they listed off a bunch of the 'warning signs' of low thyroid (thinning and losing hair - check, weight gain not able to be shifted - check, extreme fatigue - check, tachycardia - check, etc) and that it seemed to fit a lot of what was going on with me. I was dumbstruck!!
When we started the whole sweating issue path I originally was 99.9% sure that I had low thyroid. It is very prevelant in the family, my grandmother is at all of us girls to have our levels checked frequently and she always says I must have low thyroid just because how I appear when visiting her, I have also had a friend of the family who has thyroid issues say that I had a textbook case of it. I have had the hair and weight issues more increasingly over the year and it just seemed to answer a bunch of questions. I wake up most days with hoarseness and it can come on at any time for not reason, I have also been having more and more issues with swallowing. Most meats I can not get down unless having a large drink of water to help it down. I have asked to have my thyroid levels measured countless times and am always told that they are normal. I even went to my first internist appointment expecting to come out with a diagnosis of hypothyroidism and given medications and be on my way. Well she also said my levels were normal and not the cause. So at that point I dropped it and gave up on it figuring all these doctors (3 different doctors) couldn't be wrong and I must be mistaken and mom also dropped it saying it wasnt the problem and we (I) needed to move on. So when she brought up this talk show and what the person said and then told me to go check my levels, I was stunned!
I went down and found levels from a few years ago that showed my levels at just slightly above 2.5 and then my labwork from the massive work-up done last year and my numbers were at a 3.3! So not only are they above the 2.5 level for being low, they have also increased in the few short years that had past! Mom mentioned that they had suggested taking Viatmin C, Vitamin D and Zinc to help. Well I already take all of those but I have increased my Vitamin D level to see if that helps. Unfortunatly we don't know what else could help as it seems like a medication problem, not a vitamin problem. I go to see my internist on thursday and mom wants to bring it up and at least get my levels checked again to see if they are going up or staying steady. We also want to tell her how symptomatic I am and hope that she will agree to trying a very low dose of medication. We all know that us EDSer's don't test 'normal'. You can't take an EDSer's test result and compare it to a normal person's result. You have to compare that result with previous results that that person has had. That is why it is so important for us EDSers to get baseline tests of EVERYTHING pretty early in our health journey. If my internist does not agree about trying it I may ask my GP about it. He is usually pretty good about me trying things if I have a good solid reason behind wanting to try it. And if that doesnt work mom and I are going to go into the health food store as we think we heard that they have a supplement there that is specifically for thyroid health. If I can't get a doctor behind me than I am going to try it and see if it helps, and if it does that is just one more thing I can take to the doctor to show that some of my issues may be thyroid related!
Here is a breif list of symptom from (http://www.medicinenet.com/hypothyroidism/page3.htm):
- Fatigue - Definitly, can sleep 12 hours and still be exhausted and tire out very easily
- Depression - This is debatable, with the amounf of health issues I have I think depression is natural
- Modest weight gain - Unfortunatly I have gained 15lbs since Christmas
- Cold intolerance - Always cold and have blankets around
- Excessive sleepiness - Again can sleep more than 12 hours in one go
- Dry, coarse hair - That is also thinning and falling out
- Constipation - Yes but this could be from EDS or my medications
- Dry skin - Just this last year I have had to use lotion when I have never before in my life
- Muscle cramps - Yup, but again could be EDS
- Increased cholesterol levels - The last time it was checked it was high normal
- Decreased concentration - Again unfortunatly this occurs more often than I would like
- Vague aches and pains - Again debatable because of EDS
- Swelling of the legs - Not sure about this one
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