Well I had my 'emergency' appointment with my rheumatologist today. I apologized for having to make one but he said that yes, I needed to come in and see him for sure. As soon as he heard that I have not dislocated that knee since I had surgery on it years ago, he started asking about the surgeries. I told him that Dr. S did the first one and that I would refuse to deal with him again and that Dr. F did the last two. He then asked if Dr. F was still practicing and I told him that no, he no longer was in practice (as an aside I joked with mom about how why would he ask if Dr. F still practiced. Obviously if he was still practicing I would have been seeing him and not the rheumy). He then said 'Dr. M is very good, have you seen him before?' I said I hadn't so he started going about writing up a referal to him. Mom quickly interjected and asked if this was a [local town] doctor or a [close-ish larger town with teaching hospital] doctor (I honestly don't feel comfortable having any ortho type surgery in my home town any more) and he assured us that he was at the teaching hospital as that is where he think I would get the best care.
He wrote up the referal while I was sitting right there and had my input into the letter. He wrote the history down, gave the EDS diagnosis and asked him to 'evaluate and treat as he saw needed'. I then asked what I should be doing in the mean time as I know that to get in to a doctor there takes a while (which I am more than willing to wait as I know I will get much better care there!). I told him that I can put weight through my knee but I don't know if I should be or not. He asked when I last had x-rays and I told him that I hadn't had any done since I injured it. He didn't look happy :( and I felt guilty as it looked as if he thought I should have gone to the ER with it (more about that later). So he quickly wrote up a referal to get x-rays and then had me get up on the table and lie down. He asked where the pain was and asked if he could examine it (he knows that his examinations hurt me later so always asks first, which with him, I would let him play with my joints any time as I know he is doing it to help me and not to just see the 'circus tricks'). He said he thinks there is something going on underneath my knee cap but that he believes it is okay for me to weight bear on it (I am using one crutch outside the house and just 'limping' inside the house as everything is pretty close). However he wants me to restrict my walking as much as possible. This little old man of a doctor, who has had both hips replaced and obviously has some arthritis then gives me his hands to help me to sit up and get off the table.
Then was the part I didn't really know how to bring up. He always gives me 'X' pills that last 3 months until my next appointment. I have never run out of them and usually have a few left over at the end of the 3 months (I see him every 3 months). Well there was no way that the X pills would last me this 3 months with the frequency I have needed them with the knee dislocation. And being the great doctor that he is, he grabs his perscription pad and asks me what I want. Then we get to quantity and he tells me he will just do as normal and give me X pills. He then says that the pharmasist may have to call him to 'over-ride' this but thats no problem because he knows I don't abuse them and that my pharmacy knows I don't abuse them so it would just be red tape that has to be jumped through but not to worry about it. And that was the appointment in a nut shell. I am really fortunate to have this guy as my doctor, he is great to me and has done more for me in the time I have seen him than most all of my other doctors put together!
Oh, funny thing is that when we first got in the room he asked if he could tell us a story. Seems he had this lady come in and he was doing an exam and she put her hands on the table and a light went off above his head and that she has EDS! He has diagnosed two other people with EDS since me and credits me for those diagnosises as if I wasn't a patient and had given him so much literature he would have never picked up on it. Definitly made me feel good :)
As for the ER. Mom and I have decided that at my next appointment we should broach the subject of ER visits. Becasue of the EDS and the Osteoporosis, I have to be very careful and today was the second time that I have gone to him with a recent injury that he wanted x-rays done ASAP. I have decided that I want to get a letter from him stating the following: a) that I have EDS and Osteoporosis b) that x-rays may be necessary to rule out urgent issues c) the medications I am on and have been on since ____ (so I'm not a drug seeker) d) that I do actually dislocate and then reduce my own dislocations (most wouldn't believe that I really did dislocate my knee because it went back in) and e) that reductions in me can not be handled the same was as reductions in normal people. We also want to talk to him about what my actions should be in different situations. Should I go to the ER and get it checked, should I wait and get into see him or is there something different he would want me to do. I hate calling up asking to get in asap becasue of an injury when I know the office is booked. They have been great to me and have told me both times that I have needed an urgent appointment that it was a needed appointment. I would just like to have a plan of attack so there is no extra worrying on my end (stress does me in big time). And seeing today that it seemed that he thought I should have already had x-rays made me wonder where I draw that line about going to the ER.
Anways, we went right to the hospital after the visit so I could get x-rays done. I am going to glow in the dark! I have had 5 x-rays done in 24 hours lol (dentist and knee). Unfortuantly with these x-rays they had to bend and situate the knee to get the picture they needed and it was very uncomfortable and painful. However, the lady doing the x-rays asked about EDS and wondered if that is what her daughter has as she has been told she is hypermobile and has to be careful. So she wrote down the name to take home and look up. How cool is that! After the x-rays we came straight home. We were going to go to Shoppers Home Health to look for a shower seat but after Dr. W playing with my knee and having the x-rays done, I was done. I was in a lot of pain to the point that I was feeling nauseated from it all.
Come home to find that K is having a rough day too. He broke down in the middle of a test he was doing and told his teacher that he really missed our old dog and didn't like our new one. Not sure where that came from as Toby has been dead for 2.5 years and we have had Tazzy for 1.5 years. We think it's just him upset about the situation with his friends (long story short he finally found a local friend to play with, as well as his younger brother but the kids were removed from their house for a pretty flimsy and stupid reason so they are in foster care temporarily. K got to see them over the holidays but not to say good-bye to them.) Then at Karate he got really upset because Sensei told them they were going to be sparring which he was so happy about so he went to put on his cup and realized he forgot to put underwear on (????) but that was fixed but when he went to put his mouthguard in it didn't fit and he was gagging on it. Dad was so worried about getting the fit for the teeth and having K not play with it that K never had it in long enough to realize that the sides go so far back that it is activating his gag reflex. Because of the rules his Sensei could not let him spar without a mouth guard (and he felt bad about it too) and poor K sat with us and crying and sobbing through the entire thing. I suggested we go home which mom got mad about but I just didn't want the kids to make fun of him and she thought I was getting mad at him which was not the case. He calmed down near the end and his Sensei called him over and gave him a little talk and he was happier. He did get to play the end game which was his choice as he was 'birthday boy' (they get to wear the birthday belt the week of their birthday. As there were no classes on his birthday he got to wear the belt this week). So he went in and took his cup off (apparently not very comfortable to wear if you aren't wearing underwear then came out and the played a game of crab soccer. After the class when we were gathering things up Mr. R came over to talk to us and told K that he had the exact same problem with his mouth guard and it always made him gag so he cut the sides down on it as it only really has to protect your front teeth and that he knew that it was a hard thing to get used to but that he eventually would. Mr R is an amazing teacher who we think has a very large soft spot for K and is so encouraging to him. So K felt better about that, then Sensei came over and apologized and said he had to follow the rules to which mom said she knew and that she wouldn't have let him go out without a mouth guard anyways with all the issues we have had with his teeth. So it ended okay. Went and got him a milk shake and headed home.
We stopped at Shoppers so I could run in the perscription and told the pharmasist (who knows me quite well) that I didn't need the script filled but if she could put it on hold, that I know I have a lot of the other ones but with the dislocated knee my doctor gave me another perscription and she completed the sentance 'in case I ran out' and I told her that if she needed to he understands she might have to call (didn't sound like she would have to though). Got a few things, came home, watched "Wipeout" with K for a bit and then watched a few episodes of "The Big Bang Theory" with mom. And that completely rounds up my day.
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