May 19, 2009
It has been another very long day. I had such severe pain as I came near my 4 hr injection times it was hard to deal with (mostly tireing and frustrating that I had to go to the hospital as I now know I have other options that should be made available to me and that I should be getting encouraged to take such as a pump for my subcutaneous injections oreven possibly some arrangement by which I could administer them myself).
Poor Emeraude had to accompany me not only to many of the injections but also to a doctor’s appointment which I woke her up from her nap an hour early for. I had wanted to postpone my appointment until Vickie returned and although my family doctor said this was not a problem, he did actually make me have the appointment (which lasted a 1/2 hour but did not cover any of my specific questions/concerns as I was not mentally prepared not having anticipated that I would be pushed into the appointment having said clearly that I wanted to wait. This is VERY frustrating and discouraging… I do not like feeling like I have been manipulated (I let him know BEFORE having to follow him in to his office that I wanted to postpone the appointment and yet like I said, I had to follow him in to finish the request and then he said that ‘since I was there’ I WAS ONLY THERE BECAUSE I DIDN”T WANT TO BE TOLD LATER THAT I HAD “missed” the appointment if I called to reschedule it… THIS will have to be cleared up when I do see him again with Vickie (Vickie my dear advocate, if you read this please make a mental note of that so it is not forgotten at the next appointment, I DO NOT want this situation to repeat itself). Having said all that, my doctor did NOT have me tied to a chair or anything, I just am not sure he realized just how overwhelming it was to me to be there feeling unprepared and like I did not have a choice.
So, now I will not see him again until the 1st of June… I wonder, if had I managed to postpone the appointment as I had wanted to, would he have wanted to see me sooner – next week would have been ideal, BEFORE Emeraude’s birthday, I hope to have the strength (I get so worn down with these little arguments and fights, the ones that shouldn’t even exist, who else would ask to have an appointment rescheduled with an advocate present and be pressured into having it regardless? I would hope this isn’t common) to call back tomorrow and push to have it sooner.
FOR VICKIE: sorry, but if I wait to be on facebook I risk forgetting… I do not see why I cannot at the least have some kind of arrangement where I would go to the hospital, check in as normal and be able to sign to give MYSELF my injection. This would avoid the OFTEN hour or more that I am spending there for EACH of my 3-5 visits. I administered my copaxone injections, which were subcutaneous also, myself for over a year and know very well (a couple nurses appreciate when it is busy and I have the results when they get to the room, saving time) how to take my vitals. This would help the situation in a HUGE way and MUST, if they are not going to find a way to let me get them outside of the hospital, HAPPEN to give me some quality of life and dignity (there is still a nurse, or two, who even when there are people in the hall and I am on the bed – if I am sitting in the chair an open door isn’t even an issue as know one could see anything anyways – leave the door open. things like this might seem mundane but they are not when what should be a private battle is so publicly viewed, with so much of my life being viewed by staff/patients/passers-by at the hospital, wether I am having a really bad day and have not yet had a shower so I am a mess with awful hair, day-old make-up and pyjamas, or I am in so much pain that I am crying or moaning in the lobby for all to see, or people see me limping into the hospital – I don’t go there when I can walk obviously – and then according to my doctor, comment about the fact that I can ski or take walks or play with my kids… That last one was something that although I like to say I don’t care what people think – and try not to – somehow still bothered me. I would’ve preferred not to know that there are people who have some kind of problem with me enjoying life when I am able, do they worry that I am not ill enough??? I just prefer to see the good side of people… Like for example, one of Emeraude’s friends sent her an invitation to his/her birthday and the Mom wrote a nice note offering that if I was well I was welcome to stay for the lunch BUT if I was not I could drop her off OR the Mom was happy to pick Emeraude up and drop her off – HOW THOUGHTFUL IS THAT 🙂 I was so touched. Although we both grew up in Manitouwadge and she has babysat Emeraude when I needed to go to the hospital (sweet again) we do not ‘hang out’ or anything so that she would be so considerate really meant alot, I have not seen her recently and she had no reason to assume I could use the offer but made it and WOW, I almost cried when I read it for how much it meant that someone would want so much to include one of my kids and accomodate THEM realizing that it is not there fault I am sick and it is enough that there Mom can’t do alot of things anymore, that they shouldn’t have to be left out because I might not be well on a certain day. Those are the kinds of things I like to focus on when thinking of people.
Anyways, back to today… Emeraude had soccer tonight and was AMAZING! I am still feeling frustrated that her father was so adamant about not wanting any suggestions about coaching. She is having fun but she, and many of the other kids would be less frustrated if the game was not being played by the same 3 or 4 kids the entire 1/2 hour… This is happening because although the coaching package has alot of instruction about the number of kids who should be on the field and each having opportunity to play, they are all playing at once so the few who excell (and it is really impressive just how much those few excell! WOW – super talented little ones) are in control of the ball pretty much all the time while the rest are just running their little hearts out never quite catching up, always just getting close enough to see as the game changes direction again and flies by them. If they were playing 7 (or whatever the number is) at a time like the instructions specify, they would be more likely to EACH have opportunity to play and would enjoy it that much more and not spend so much time frustrated.
On another note but still in soccer I was really dissapointed tonight to overhear a little boy asking Lloyd (he’s assistant coaching Emeraude’s team) something about his (the little boy was showing his hand with the finger up) middle finger… Lloyd looked confused (not that he doesn’t know what that means but more probably, like me was surprised that this was coming from a little one and wondered where he was going with it) and speechless as the boy said something (I missed what he was saying at first) and asked Lloyd as he held it up “do you know what this means?” looking too old for his age. Lloyd gently put the little boys finger down and said “I’m just not sure this is the place for that”, I asked him how old he was wondering if maybe there had been a mix up and he was in the wrong age group (Emeraude is in Primary League – 4 & 5 year olds) and he said 5. I told him “well I wouldn’t have guessed it to see how well you ran and kicked the ball”, it seemed to work and change the subject and then we were high five’ing “good game” so thankfully the conversation was over but my goodness. Why on earth would a five year old be talking about what sticking up your middle finger means? It went a long way in justifying my choice to keep Emeraude home in the fall. Too many kids are growing up WAY too fast these days. This of course is through no fault of their own and is really sad but I would like to have Emeraude grow up at her own pace and not be introduced to things that I don’t think are appropriate.
The kids after soccer, had an extra-special treat as the Mom responsible for freezies had actually brought popsicles. This was really impresive to Emeraude! She was still talking about it an hour and a half later on our way home from the high school! We left and went directly to the High School where Lloyd had a volleyball practice. Emeraude and I went in to watch, it has been a long time since I watched Lloyd play anything and volleyball is one of my favourites to watch him play so it was a really nice evening. He is just so happy when playing volleyball, it seems to bring out the best in him. My girl had played wonderfully then I watched my young man have a great practice – I could not have been much happier. At the volleyball practice, Lloyd had a slip-up which had him doing the splits – something that was funny because he had been telling me this weekend he could and I was honest about my skepticism so he was happy that I saw it with my own eyes lol. Emeraude was thouroughly impressed with one of Lloyd’s coaches, Mr.O, who she is very fond of, bringing her a freezie “without me even asking!” she said enthusiastically lol.
Emeraude & I left the practice as it was getting quite late (it was already a 1/2 hour past bedtime and we had to wash-up, brush teeth, read stories, sing & pray yet! Thankfully, Lloyd arrived just as I was finishing her tooth brushing and wondering how much longer I could wait to go to the hospital (I was having alot of difficulty walking/standing) so, Lloyd took over encouraging Emeraude to choose books for bedtime and I called Dad for a ride. There was a favourite nurse of mine on duty (and another absolute favourite had been working the day shift – thank goodness because had it not been her I would have spent alot more time waiting as the emerg was very busy today) and I was in & out as fast as possible returning home as Lloyd finished reading the last book in Emeraude’s bedtime choices.
Apparently we are expecting sunny skies and +22 temps tomorrow… I hope to be able to take advantage of the warm weather and be outside with my girl most of the afternoon. I would REALLY like to take a walk with her and hope it will time out. Emeraude & I hope to work on our dreamcatcher tomorrow (we started it a few weeks ago) as well as going to ‘cercle des amis’ in the a.m. The three of us plan also to go fishing tomorrow after supper (and before Lloyd’s 19h30 volleyball practice).
Have a restful, peaceful night. Thanks for reading and please keep my family in your prayers.
