Today I am going to see a new GP. Anyone who has read this blog from the beginning (I really don't think you exist) will remember my trepidation and then my joy at my first visit to Dr McLovely, whom I am missing quite a lot! I have been here nearly a month and I MUST get some prescription renewals. I'm dreading it. I have to take my copy of 'War and Peace' (my medical file from Dr McLovely).
I now live in a VERY small community, TLOML works at the local medical center part-time, The Nurse is there full-time, I socialize with some of the doctors and most of the nurses and admin staff... Of course The Nurse and TLOML see me enough to see both my good days and my bad. They know that when I go out to a social function I am sucking it up and soldiering on; they know that I often have to pay the next day for the efforts of the previous day; they know that the times of activity only happen because of the 18 - 20 hours I spend per day in bed. Others don't.
On Saturday TLOML and I went on the ferry to the bigger city on the mainland. Foolishly I had overdone it quite badly on Thursday and Friday and I was (and still am) in the high range with both my constant pain and my breakthrough pain. In anticipation I took my cane. I think it is the first time I have used the cane on the island. Here the stupidmarkets are tiny, the parking for everything is close, TLOML is almost always there to help me balance, and basically I have been able to get by without it. Naturally we knew people on the ferry, (TLOML knows almost everyone everywhere)and though I caught a quick glance at the said walking stick in my left hand nothing was said. Once in the city I used it to walk off the ferry to the car, then didn't pull it out again until we were at the SUPER mall. I have to be really honest here, there just aren't all that many things I miss about the US; I miss drive through banking; I miss the low cost of things there; ummmm... I miss the Interstates... But there is one thing that I miss above all, one thing that stands out from the others like a hippy at a GOP convention... I miss with passion the courtesy motorized carts that were available even at my local stupidmarket.
Using one of the courtesy scooters was a VERY hard thing to do the first time. I remember gazing enviously at those carts for a long time before a day came when I was just SO SORE and Sam's Club was SO BIG that I simply could no longer resist. I was never a constant user, it always depended on my pain and fatigue levels, the potential length and complexity of the shopping experience, and if I was alone or if I had someone who could manage for me if I needed to get off my feet. Saturday I longed for one of those courtesy scooters. At first I was leaning on the trolley but then we bought the rather heavy punching bag (a birthday gift to TLOML's sweetheart younger son) and the trolley became too heavy, so I went back to the cane and handed the trolley over to TLOML. I couldn't take waiting in the queue at Target so I waited on the kangaroo on the kiddie coin-op carousel. I really wish Australia would catch up with the US as regards things like courtesy scooters, I would have been so relieved to have had one then and there!
So here I am going to yet another doctor, I'm worried that the invisibility of my condition might work against me, the usual worry. It's an old problem and one that all of us with invisible conditions experience. In Sydney when I went to the doctor I always used my cane. It was necessary to walk alone from the parking which was quite distant but it was also a concrete and tangible symbol of the disability that is otherwise invisible. I was also suffering a LOT of vertigo at that time and had the balance of a two-legged stool! Now the vertigo has eased off somewhat and the parking is right outside the door, but I do need this doctor to understand.
It seems a lot to ask of a stranger, that they can understand something that I really don't understand myself. I don't know why I can do almost anything for a short period of time, I don't know why I can carry a punching bag off the ferry and then have to go home and lie down to recover, I don't know why sometimes I can't make myself stand up straight when I get up out of bed, I don't know why sometimes I fall over for no real reason when I am trying so hard not to fall, I don't know why the urge to be horizontal is like an addiction or a craving, I just don't know... Most days I can suck it up for a couple of hours and go out to a social event and only the most observant of people would ever know I was in pain - some days that would be impossible.
So do I walk in to the doctors office with my walking stick in hand and say hello to the receptionist who I last saw when we shared a bottle of bubbles at a fabulous pool party?
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Sunday, 12 February 2012
Tuesday, 6 December 2011
Pain Clinic Update
Well, today was the day... I couldn't sleep and woke very early after probably 4 hours of broken sleep. I was very early to the appointment but it did mean I got a great parking spot! (I always say I will never win the lottery because I use up all my luck on finding parking spots!) The hospital is huge and it was still a very long walk through to the clinic (I wonder why they don't have moving footways like the airport?).
First I saw a psychologist and answered about 4,672, no hang on it was 4,676, questions. Next I was meant to see a physiotherapist but the physio was off sick so I ended up with a wait of about an hour and a half before seeing the doctor. I didn't have to exaggerate the pain today, though it was still a pretty good day by and large, all the sitting around was really starting to take a toll by the time I got in to see the doctor.
The doctor was young and very muscular, he was also very understanding and quite irritated by his pager that went off at least 6 times in the hour I spent with him. He was very sweet doing a trigger point examination; he apologized each time I squealed and had to be scraped off the ceiling. He diagnosed me with... wait for it... I hope you are on the edge of your seats...
Fibromyalgia!
Well that was a huge surprise, not the diagnosis I have known that for ages - a medical facility where they believe in FMS!
He has decided to put me back on Lyrica, which did nothing for me in the four and a half months I took it in the US. Who knows, though, the dose might be different, I might respond differently. He is also putting in an order for me to go into hydrotherapy which I think might be terrific except that there is not going to be an opening until next year and ... well... with the developments in my personal life I may well be in a completely different part of the country by the time they get me scheduled in.
The Lyrica is not covered by the government pharmaceutical benefits program but because I got the script filled at the hospital they only charged me the benefits rate which is pretty cool! It also means that I will have to get to the hospital pharmacy at least once a month which is rather inconvenient. Not that I mind if the damn thing is helping!!! I did get the script filled but I have decided not to start taking it until I see Professor McCool on Monday. I just feel like I trust him more to make sure there are not any harmful interactions with the other stuff he has me taking.
By the time I got back to the car I was really dragging pretty badly and I was in a lot of pain. Straight home to the blissful relief of being horizontal. I even had a nap - something I almost never do in the day time. I'm still feeling exhausted and pretty sore but that's it for appointments for this week. Back on the treadmill again with McCool on Monday and McLovely on Tuesday.
First I saw a psychologist and answered about 4,672, no hang on it was 4,676, questions. Next I was meant to see a physiotherapist but the physio was off sick so I ended up with a wait of about an hour and a half before seeing the doctor. I didn't have to exaggerate the pain today, though it was still a pretty good day by and large, all the sitting around was really starting to take a toll by the time I got in to see the doctor.
The doctor was young and very muscular, he was also very understanding and quite irritated by his pager that went off at least 6 times in the hour I spent with him. He was very sweet doing a trigger point examination; he apologized each time I squealed and had to be scraped off the ceiling. He diagnosed me with... wait for it... I hope you are on the edge of your seats...
Fibromyalgia!
Well that was a huge surprise, not the diagnosis I have known that for ages - a medical facility where they believe in FMS!
He has decided to put me back on Lyrica, which did nothing for me in the four and a half months I took it in the US. Who knows, though, the dose might be different, I might respond differently. He is also putting in an order for me to go into hydrotherapy which I think might be terrific except that there is not going to be an opening until next year and ... well... with the developments in my personal life I may well be in a completely different part of the country by the time they get me scheduled in.
The Lyrica is not covered by the government pharmaceutical benefits program but because I got the script filled at the hospital they only charged me the benefits rate which is pretty cool! It also means that I will have to get to the hospital pharmacy at least once a month which is rather inconvenient. Not that I mind if the damn thing is helping!!! I did get the script filled but I have decided not to start taking it until I see Professor McCool on Monday. I just feel like I trust him more to make sure there are not any harmful interactions with the other stuff he has me taking.
By the time I got back to the car I was really dragging pretty badly and I was in a lot of pain. Straight home to the blissful relief of being horizontal. I even had a nap - something I almost never do in the day time. I'm still feeling exhausted and pretty sore but that's it for appointments for this week. Back on the treadmill again with McCool on Monday and McLovely on Tuesday.
Monday, 28 November 2011
And now over to Displaced on the Health Check Desk
Well it was a beautiful day in Sydney to visit the Immunologist Professor McCool. Good news on most fronts with several nasty conditions being ruled out. Prediabetes was confirmed with findings of both high glucose and high insulin so dietary changes are in the cards for Displaced. Hashimoto's reconfirmed (but with lower levels of antibodies which is interesting). I also tested positive for Gastric Parietal Antibodies which can be associated with atrophic gastritis and with a B 12 deficiency (but my B 12 levels were ok). (I thought there were only two Bananas in Pajamas, B1 and B2, -- who the hell knew they were up to twelve!!!)
Unfortunately the radiographers had not yet made the MRI report available but Cool McCool had a glance through the hard copies of the scans and said he couldn't see anything that wasn't meant to be there. The thing in my brain that looked like a bobby pin was pronounced to be a flaw in the film not a miracle worthy of a Lifetime movie.
Off I staggered to the pathology department to have more bloods taken, only seven vials this time, among the things that are being tested for is Myasthenia Gravis (an auto immune condition meaning muscle weakness) and heaven only knows what else he is looking for.
I'm feeling ok about the results except for the prediabetes. The best thing I can do for that is to exercise more but my muscles are so badly reactive to exercise at the moment I don't know how I am going to do that. I got a pretty severe lecture from The Horsewoman about starting to change my diet and my activity level. I'm still experiencing muscle weakness and pain on use from my activity on Friday night. My arms are still super sore. Otherwise a pretty good day!
Unfortunately the radiographers had not yet made the MRI report available but Cool McCool had a glance through the hard copies of the scans and said he couldn't see anything that wasn't meant to be there. The thing in my brain that looked like a bobby pin was pronounced to be a flaw in the film not a miracle worthy of a Lifetime movie.
Off I staggered to the pathology department to have more bloods taken, only seven vials this time, among the things that are being tested for is Myasthenia Gravis (an auto immune condition meaning muscle weakness) and heaven only knows what else he is looking for.
I'm feeling ok about the results except for the prediabetes. The best thing I can do for that is to exercise more but my muscles are so badly reactive to exercise at the moment I don't know how I am going to do that. I got a pretty severe lecture from The Horsewoman about starting to change my diet and my activity level. I'm still experiencing muscle weakness and pain on use from my activity on Friday night. My arms are still super sore. Otherwise a pretty good day!
Thursday, 24 November 2011
Is you is, or is you ain't depressed?
Yesterday I had a bit of an argument with the psychologist I have been seeing,
She thinks that I'm depressed and I don't think that I am any more depressed than any intelligent person would be in my situation. There's a lot of stuff going on in my life at the moment that is cause for concern. Problems with housing, money, the government, oh and let's not forget the stress and uncertainty associated with my health. There would be something wrong with me if I were vivacious, bright, bubbly and effervescent all the time! Quite frankly, if you take your car to the mechanic and you tell him what is wrong with it, is he or she very likely to turn around and tell you you sound like you hate your car? Of course when I am at the psychologist I talk about the things that are bothering me! I have been depressed, I've been down in the blackest parts of my soul. Hell, I've hung out down there and had a good look around; stirred up the demons. I know what depression feels like and this isn't it!
Perhaps I should be aiming to give a more fair and balanced account of my state of mind? Maybe then people would stop asking me if I am thinking about hurting myself? (This was asked at least 5 times last week which I must confess was a rather low week for me.) More to the point I am concerned that if the medical professionals who are handling my case start to focus on the idea that I am depressed the next thing they will be saying is that the pain and fatigue (and all their nasty little friends) are all caused by depression and THAT is quite simply NOT the, case. This pain has followed me, to a greater or lesser extent, through all kinds of emotions, through great highs and horrible lows, through hopeful excitement and abject misery.
Sooooooooo in view of the fact that it has been Thanksgiving in the US, the first Thanksgiving I have missed in a dozen years I am going to talk about some of the things that I am hopeful and excited about.
She thinks that I'm depressed and I don't think that I am any more depressed than any intelligent person would be in my situation. There's a lot of stuff going on in my life at the moment that is cause for concern. Problems with housing, money, the government, oh and let's not forget the stress and uncertainty associated with my health. There would be something wrong with me if I were vivacious, bright, bubbly and effervescent all the time! Quite frankly, if you take your car to the mechanic and you tell him what is wrong with it, is he or she very likely to turn around and tell you you sound like you hate your car? Of course when I am at the psychologist I talk about the things that are bothering me! I have been depressed, I've been down in the blackest parts of my soul. Hell, I've hung out down there and had a good look around; stirred up the demons. I know what depression feels like and this isn't it!
Perhaps I should be aiming to give a more fair and balanced account of my state of mind? Maybe then people would stop asking me if I am thinking about hurting myself? (This was asked at least 5 times last week which I must confess was a rather low week for me.) More to the point I am concerned that if the medical professionals who are handling my case start to focus on the idea that I am depressed the next thing they will be saying is that the pain and fatigue (and all their nasty little friends) are all caused by depression and THAT is quite simply NOT the, case. This pain has followed me, to a greater or lesser extent, through all kinds of emotions, through great highs and horrible lows, through hopeful excitement and abject misery.
Sooooooooo in view of the fact that it has been Thanksgiving in the US, the first Thanksgiving I have missed in a dozen years I am going to talk about some of the things that I am hopeful and excited about.
- I'm eagerly anticipating going back to University next year. I see it as an opportunity to retrain into an area where I might be able to get high paying part-time work that I could participate in regardless of the effect of fibromyalgia (or whatever the hell this is). I also see University as an opportunity for me to shine and to increase my pretty low self-esteem. I have always done well in the past and I hope to do well again. Furthermore it is an opportunity to meet bright, interesting people and to expand my social circle.
- I have been spending time with The Boy who is now looking at staying in Sydney and perhaps not moving to the UK for a while. He makes me feel happy and proud and we are close and getting along well (complete with our usual bickering).
- I have rediscovered many of my old friends and I have been spending time with them and I have been feeling appreciated and cared for. The Best Friend is like a shining beacon of warmth and support and makes me laugh hysterically every time we meet!
- The Reader is angling to get me some copy writing work which would be something I could comfortably do while lying down (which I spend 80% of my life doing). This would help with my financial woes, and perhaps even my housing problems.
- Then, out of the blue, there is The New Connection with an old friend that seems to be blossoming into something tender and beautiful. There is even a tiny little voice inside me that is asking ...? well... I'll pause that thought for now. However she is coming to visit Sydney soon and I am very much looking forward to spending time with her when she is here.
- I have been seeing a really AWESOME group of doctors. Dr McLovely is caring. helpful, compassionate and kind and Professor McCool is uber cool and is leaving no stone unturned. While his investigations are hanging over me a bit at the moment I am definitely more hopeful than fearful.
- Today I had a telephone interview for a part-time job. The good news is that it will not be until next year which gives me some time to resolve all the issues that are holding me back at the moment. Hopefully by then I will also be feeling better and stronger and I'll be able to work this around my University studies.
Yesterday I had an MRI (ordered by McCool) so no more calling me brainless, ok? I do have a brain I have a picture to prove it! I will be seeing McCool on Monday afternoon and although I am frightened of some of the possibilities (and of him finding nothing) I am also excited and hopeful that there might be something that can be treated. Naturally this is hanging over me to some extent... but I am honestly more hopeful than trepiditious.
Anxiety, I will cop to, I do have issues with anxiety and stress is a huge trigger for me, but depression? Not at the moment!
Tuesday, 15 November 2011
Trudging through treacle...
I am calling it treacle but I resent the fact that treacle is a substance of which I am rather fond...
It might be better called tar or mud which are both unpleasant but which don't quite capture just how hard it is to make my body move today.
Even typing is hard and keeping my eyes open is even harder...but I feel like I need to spit something out there.
I think where I used to have exhaustING days now I have exhaustED days... far too frequently. My body feels a bit like it used to feel after a 200 metre sprint, only there hasn't been a sprint. I tried to describe the feeling to Professor McCool the other day and missed this metaphor unfortunately... I wonder if it means something that my muscles feel like I am in an anaerobic state?
I'm off the juice diet, McCool said to stop and I'm glad I did cause I didn't have even a single day while I was on it when I felt strong or energetic. Mind you I feel crappy still so maybe it wasn't the diet's fault. My fingernails liked the diet they seem healthier.
So night after night I have been waking and not being able to go back to sleep, little snatches of sleep just can't sustain anyone. Last night I took one of the anti-depressants McCool prescribed and I slept all almost all night and was like a zombie all day... I hope they don't continue to knock me out that much. I hate taking meds.
I'm such a cheap drunk!
It might be better called tar or mud which are both unpleasant but which don't quite capture just how hard it is to make my body move today.
Even typing is hard and keeping my eyes open is even harder...but I feel like I need to spit something out there.
I think where I used to have exhaustING days now I have exhaustED days... far too frequently. My body feels a bit like it used to feel after a 200 metre sprint, only there hasn't been a sprint. I tried to describe the feeling to Professor McCool the other day and missed this metaphor unfortunately... I wonder if it means something that my muscles feel like I am in an anaerobic state?
I'm off the juice diet, McCool said to stop and I'm glad I did cause I didn't have even a single day while I was on it when I felt strong or energetic. Mind you I feel crappy still so maybe it wasn't the diet's fault. My fingernails liked the diet they seem healthier.
So night after night I have been waking and not being able to go back to sleep, little snatches of sleep just can't sustain anyone. Last night I took one of the anti-depressants McCool prescribed and I slept all almost all night and was like a zombie all day... I hope they don't continue to knock me out that much. I hate taking meds.
I'm such a cheap drunk!
Thursday, 10 November 2011
Boring update
Ok boring update - today I saw the endocrinologist and found that do in fact have Hashimoto's Disease but that managing it with a thyroid hormone supplement will not be the magic bullet that will solve all my other problems. It might help a bit with fatigue and perhaps weight loss, cholesterol etc but it won't alleviate the primary problems caused by the fibro ( duh that would be pain)...
She will have the report ready in time for me to see the immunologist on Monday which is good!
I also registered with the pain clinic (filled in their form which was like a "fill in the blanks" version of War and Peace). I hope they will see me quickly because the government is interested in their opinion of me... (of course their opinion will be that I am, "bright, vivacious, charming, intelligent and great company" just like my personals advert says I am!).
Too many ologists...
Oh well too tired to be interesting ... until the morrow!
She will have the report ready in time for me to see the immunologist on Monday which is good!
I also registered with the pain clinic (filled in their form which was like a "fill in the blanks" version of War and Peace). I hope they will see me quickly because the government is interested in their opinion of me... (of course their opinion will be that I am, "bright, vivacious, charming, intelligent and great company" just like my personals advert says I am!).
Too many ologists...
Oh well too tired to be interesting ... until the morrow!
Monday, 7 November 2011
Too tired really - just a quick update.
Today we said goodbye to Eileen, I cried so much I think I became dehydrated. I was almost embarrassed to be weeping so steadily. But I wasn't only grieving for Eileen, I was crying for my mother, my father, my aunt and uncles, my cousins, my friends who are gone, and for all of us who are left behind. I have decided that grief is cumulative. Another thought that occurs to me is that I want to cry so often and don't. I want to cry when it hurts so much I feel like it will never ease, I want to cry when I'm told to suck it up cause it isn't that bad, and I want to cry when the level of irritation my body is feeling makes real rest almost impossible. So I have a lot of repressed tears, well I did before filling several tissues today.
The Boy was wonderful and I am so very grateful to have him nearby again. The Best Friend deserves to have her halo polished (with the deluxe wax job!) for being so thoughtful and kind today. I arrived at her house (where the boy will be staying for the next couple of months) to find she had laid a sheet and a pillow on the couch so I would have somewhere nice and clean to lie down immediately. I wanted to worship at her shrine and of course (in an effort to make sure I left no tear duct even vaguely moist) I cried with relief to be horizontal, safe, and able to let go of the rigid determination to "soldier on" for at least a little while. (You will be proud of me to know I managed NOT to whimper!)
I have a huge day tomorrow again and I don't know how I am going to drag myself through it. Doctors, the Government, more doctors... But I will do it because I have waited weeks for these appointments.
I just want to finish by saying that there really are some phenomenal people out there... we lost one in Eileen but others remain. I feel a bit like the tarot card the 5 of swords... 3 are gone but 2 remain...
All is not lost.
The Boy was wonderful and I am so very grateful to have him nearby again. The Best Friend deserves to have her halo polished (with the deluxe wax job!) for being so thoughtful and kind today. I arrived at her house (where the boy will be staying for the next couple of months) to find she had laid a sheet and a pillow on the couch so I would have somewhere nice and clean to lie down immediately. I wanted to worship at her shrine and of course (in an effort to make sure I left no tear duct even vaguely moist) I cried with relief to be horizontal, safe, and able to let go of the rigid determination to "soldier on" for at least a little while. (You will be proud of me to know I managed NOT to whimper!)
I have a huge day tomorrow again and I don't know how I am going to drag myself through it. Doctors, the Government, more doctors... But I will do it because I have waited weeks for these appointments.
I just want to finish by saying that there really are some phenomenal people out there... we lost one in Eileen but others remain. I feel a bit like the tarot card the 5 of swords... 3 are gone but 2 remain...
All is not lost.
Monday, 31 October 2011
When bad news is good
Today I saw Dr McLovely again, I actually told her that I call her Dr McLovely in my blog and, living up to her name, she blushed!
She had all my test results back and there were some not so nice results.
Quincy MD I'm not, so my grasp of the significance of all these things is tenuous at best but here is the upshot...
Whatever indicates a possible auto-immune disease was elevated.
Something to do with my thyroid was wrong and she said my brain was having to work very hard (no news there) to try and get my thyroid to produce enough of whatever makes my metabolism metabolize. This makes perfect sense because I have always been what the old cow cockies (beef farmers) would call an "easy keeper". I don't eat very much but I don't lose weight either. I'm not the size of a barn or anything but I am generously proportioned.
The thingy (that is a technical term for those of you who are uninitiated) that indicates Celiac Disease was high. Potentially this could account for the fatigue and what I had presumed to be a touch of IBS.
My sugar levels were elevated on a fast test which could indicate diabetes. I told her about my weird sugar stuff from when I was pregnant. I used to go to my pre-natal checkups every month and every month my sugar levels were elevated on the pee test so dutifully I would trot across the road to the path lab for a blood test and every month my blood sugar was fine. Dr McLovely is an expert at that breeding stuff, pregnancy, family planning etc and she laughed when I told her this and informed me that I had had Gestational Diabetes which apparently makes a woman predisposed to develop real diabetes later in life.
There were few other odds and sods... apparently I have at some time had glandular fever (news to me!) Naughty cholesterol is high, nice cholesterol is too low (the bad guys are in the lead in the cholesterol Stupidbowl apparently).
NOW - a "normal" person might come out of the surgery reeling from news like this, they might be HORRIFIED or even TERRIFIED!!! But, as anyone who has dealt with Fibromyalgia symptoms knows - we are far from normal! When you live your life with a myriad of unpleasant problems that have no known cause and no known cure it does strange things to your mindset. It makes you sometimes almost wish that you had one of the trendy, clearly defined, conditions. Something that is easy to explain to other people; something that has a well publicized name; something that can be nailed down with a specific test; something that potentially can be CURED!
I'm not very keen on the idea of having diabetes; I lost a very close family friend (almost a sister) through complications of diabetes earlier this year at the tender age of 52. I'm not keen on having thyroid issues or Celiac Disease. I'm particularly not keen on having some kind of auto-immune disease (the idea of my white blood cells attacking some part of me is like a bad B Grade horror movie in my mind). Still, let's face it Fibromyalgia is not a pic-a-nic with Yogi and Boo Boo either.
In spite of blood tests up the wazoo over the last two years no one has ever seen these results before, maybe Dr McLovely ordered a more comprehensive series of tests, maybe Aussie path labs are better, maybe all these wonderful problems are all new... I don't know.
The possibility is that some of these things might explain some of the fibro symptoms and that some of these things might be manageable with diet or meds, some of them might even be curable... Of course I have been dancing with chronic pain for most of my life... long before Dr MingDynasty decided to call it Fibromyalgia so I don't really hold out much hope that these things are INSTEAD of the FMS. Most likely they are in addition to FMS... but still an explanation, however limited, is a welcome piece of news.
Wouldn't it be cool if they could up my thyroid dooverhickey (another technical term - look it up!) and increase my metabolism? Maybe I could become trim, taught and terrific and all the eligible lesbians in Sydney would suddenly be bashing down my door!
So back for more blood tests in the morning - glucose tolerance etc... I made an appointment with the Immunologist, I think it is for January 2031 (He is a VERY important person). They told me they process their cancellations every Friday morning so I have set an alarm to remind myself to annoy them weekly. They asked if I wanted to see him about chronic fatigue or allergies... I said I have fatigue and auto-immune irregularities and this stuff is ruining my life and that 2031 is just not soon enough! Hence the suggestion to call on Friday mornings (silly woman telling me that - she'll rue the day!)
Just a side note - anyone in Sydney or environs there is a rally to Re-Occupy Sydney at Noon this Sat at Town Hall and if I can drag my exhausted arse out of the house I will be there!
NB - My lovely American friends I was only kidding about the Path Labs
and
The immunologist appt is 2012... ok forgive me, so I exaggerated a little!
She had all my test results back and there were some not so nice results.
Quincy MD I'm not, so my grasp of the significance of all these things is tenuous at best but here is the upshot...
Whatever indicates a possible auto-immune disease was elevated.
Something to do with my thyroid was wrong and she said my brain was having to work very hard (no news there) to try and get my thyroid to produce enough of whatever makes my metabolism metabolize. This makes perfect sense because I have always been what the old cow cockies (beef farmers) would call an "easy keeper". I don't eat very much but I don't lose weight either. I'm not the size of a barn or anything but I am generously proportioned.
The thingy (that is a technical term for those of you who are uninitiated) that indicates Celiac Disease was high. Potentially this could account for the fatigue and what I had presumed to be a touch of IBS.
My sugar levels were elevated on a fast test which could indicate diabetes. I told her about my weird sugar stuff from when I was pregnant. I used to go to my pre-natal checkups every month and every month my sugar levels were elevated on the pee test so dutifully I would trot across the road to the path lab for a blood test and every month my blood sugar was fine. Dr McLovely is an expert at that breeding stuff, pregnancy, family planning etc and she laughed when I told her this and informed me that I had had Gestational Diabetes which apparently makes a woman predisposed to develop real diabetes later in life.
There were few other odds and sods... apparently I have at some time had glandular fever (news to me!) Naughty cholesterol is high, nice cholesterol is too low (the bad guys are in the lead in the cholesterol Stupidbowl apparently).
NOW - a "normal" person might come out of the surgery reeling from news like this, they might be HORRIFIED or even TERRIFIED!!! But, as anyone who has dealt with Fibromyalgia symptoms knows - we are far from normal! When you live your life with a myriad of unpleasant problems that have no known cause and no known cure it does strange things to your mindset. It makes you sometimes almost wish that you had one of the trendy, clearly defined, conditions. Something that is easy to explain to other people; something that has a well publicized name; something that can be nailed down with a specific test; something that potentially can be CURED!
I'm not very keen on the idea of having diabetes; I lost a very close family friend (almost a sister) through complications of diabetes earlier this year at the tender age of 52. I'm not keen on having thyroid issues or Celiac Disease. I'm particularly not keen on having some kind of auto-immune disease (the idea of my white blood cells attacking some part of me is like a bad B Grade horror movie in my mind). Still, let's face it Fibromyalgia is not a pic-a-nic with Yogi and Boo Boo either.
In spite of blood tests up the wazoo over the last two years no one has ever seen these results before, maybe Dr McLovely ordered a more comprehensive series of tests, maybe Aussie path labs are better, maybe all these wonderful problems are all new... I don't know.
The possibility is that some of these things might explain some of the fibro symptoms and that some of these things might be manageable with diet or meds, some of them might even be curable... Of course I have been dancing with chronic pain for most of my life... long before Dr MingDynasty decided to call it Fibromyalgia so I don't really hold out much hope that these things are INSTEAD of the FMS. Most likely they are in addition to FMS... but still an explanation, however limited, is a welcome piece of news.
Wouldn't it be cool if they could up my thyroid dooverhickey (another technical term - look it up!) and increase my metabolism? Maybe I could become trim, taught and terrific and all the eligible lesbians in Sydney would suddenly be bashing down my door!
So back for more blood tests in the morning - glucose tolerance etc... I made an appointment with the Immunologist, I think it is for January 2031 (He is a VERY important person). They told me they process their cancellations every Friday morning so I have set an alarm to remind myself to annoy them weekly. They asked if I wanted to see him about chronic fatigue or allergies... I said I have fatigue and auto-immune irregularities and this stuff is ruining my life and that 2031 is just not soon enough! Hence the suggestion to call on Friday mornings (silly woman telling me that - she'll rue the day!)
Just a side note - anyone in Sydney or environs there is a rally to Re-Occupy Sydney at Noon this Sat at Town Hall and if I can drag my exhausted arse out of the house I will be there!
NB - My lovely American friends I was only kidding about the Path Labs
and
The immunologist appt is 2012... ok forgive me, so I exaggerated a little!
Monday, 24 October 2011
When good days are good for different reasons
I'm hopeful.
That is a vast improvement.
It isn't that I'm hopeful this wretched thing will go away, or even that some wonderful treatment will alleviate it. I'm not hopeful that I will get my youthful healthy body back or that I will get to live the way I used to. I am pretty resigned to having to go on dealing with this giant dump truck of ... well you know what's in the truck...
Today I tried a new doctor.
My opening line was, "I'm not sure if you can help me but I'm looking for a doctor who understands Fibromyalgia and I haven't had much luck." Oh what shall I call this doctor... Dr McDelicious might be a little too familiar, and Dr McNotBadConsideringYou'reAPom is a bit too long, Dr McReallyListening is a tad too sincere, and Dr McFocused is a smidgin too brusque... how about DrMcLovely... that works.. Because she was lovely but they are all true. She gave me 45 minutes of her time.
An Englishwoman she has moved to Australia in the last 6 months (I think she might have married an Aussie bloke but I am only guessing). I checked her out on the web before the appointment and she already had a couple of bonus points with me cause she also works for Family Planning (kind of the Aussie version of Planned Parenthood). FMS isn't her specialty (I have yet to find a specialist for it) but she seemed to know what she was talking about and best of all, BEST OF ALL, she did not treat me like I was either whining, lying, exaggerating, faking, crazy or stupid. She has a plan. She sent me for a series of spinal X-Rays (to find out if a pinched nerve is causing my numb toes and foot), tomorrow I have a complete set of blood tests done, and when she gets that back she wants to refer me to an immunologist who specializes in CFS. (Yay!)
I wish I had a picture of the look on her face when I told her what the Rheumatologist (Professor McAwfullyCute) had told me I have. She made me repeat it (AUSRRIWCP) slowly so she could type it into her notes, all the while with a decidedly McLovely skeptical raised brow.
On the downside my blood pressure was quite elevated and that is NOT normal for me, I told Dr McLovely that I was quite anxious about the visit and maybe that sent it up and she told me to not be frightened next time and to remember she isn't scary, (if that doesn't deserve the McLovely title what does?) I also was having a bout of vertigo (unfortunately it is more than a Hitchcock movie) and my balance was totally shot. The body wasn't working all that well today and it was all quite a slog but it was still an UBER GOOD DAY!!!
NB for my North American mates a POM is an Aussie slang term for someone from England... I have been told it's derived from the letters on the back of the convict's clothing P.O.M.E. (Property of Mother England)
That is a vast improvement.
It isn't that I'm hopeful this wretched thing will go away, or even that some wonderful treatment will alleviate it. I'm not hopeful that I will get my youthful healthy body back or that I will get to live the way I used to. I am pretty resigned to having to go on dealing with this giant dump truck of ... well you know what's in the truck...
Today I tried a new doctor.
My opening line was, "I'm not sure if you can help me but I'm looking for a doctor who understands Fibromyalgia and I haven't had much luck." Oh what shall I call this doctor... Dr McDelicious might be a little too familiar, and Dr McNotBadConsideringYou'reAPom is a bit too long, Dr McReallyListening is a tad too sincere, and Dr McFocused is a smidgin too brusque... how about DrMcLovely... that works.. Because she was lovely but they are all true. She gave me 45 minutes of her time.
An Englishwoman she has moved to Australia in the last 6 months (I think she might have married an Aussie bloke but I am only guessing). I checked her out on the web before the appointment and she already had a couple of bonus points with me cause she also works for Family Planning (kind of the Aussie version of Planned Parenthood). FMS isn't her specialty (I have yet to find a specialist for it) but she seemed to know what she was talking about and best of all, BEST OF ALL, she did not treat me like I was either whining, lying, exaggerating, faking, crazy or stupid. She has a plan. She sent me for a series of spinal X-Rays (to find out if a pinched nerve is causing my numb toes and foot), tomorrow I have a complete set of blood tests done, and when she gets that back she wants to refer me to an immunologist who specializes in CFS. (Yay!)
I wish I had a picture of the look on her face when I told her what the Rheumatologist (Professor McAwfullyCute) had told me I have. She made me repeat it (AUSRRIWCP) slowly so she could type it into her notes, all the while with a decidedly McLovely skeptical raised brow.
On the downside my blood pressure was quite elevated and that is NOT normal for me, I told Dr McLovely that I was quite anxious about the visit and maybe that sent it up and she told me to not be frightened next time and to remember she isn't scary, (if that doesn't deserve the McLovely title what does?) I also was having a bout of vertigo (unfortunately it is more than a Hitchcock movie) and my balance was totally shot. The body wasn't working all that well today and it was all quite a slog but it was still an UBER GOOD DAY!!!
NB for my North American mates a POM is an Aussie slang term for someone from England... I have been told it's derived from the letters on the back of the convict's clothing P.O.M.E. (Property of Mother England)
Sunday, 16 October 2011
It's a pain in the arse!
No, I mean it... it really is a pain in the arse!
Just a little background on the way Fibromyalgia (or AUSRRIWCP as it will forthwith be known (NOT)) affects me from a pain perspective. I ache, everywhere from the tips of my toes to my hair follicles, it's a base line low to middle level pain that is OMNIPRESENT! Things hurt all the time and they hurt more when they are moved, flexed, stressed, touched, pushed, pulled, caressed and generally whenever there is any kind of stimulus either from the interior (me asking my body to do something) or from the exterior. If you know what it feels like when you have the flu and you ache all over and your skin hurts then you have some idea of the constant baseline of pain. Then there are the floating sharper more insistent pains and these ones wander around my body with no rhyme or reason. It might be one hip flames up and walking becomes excruciating (I would use a cane but that hurts my hands wrists and shoulders), it could be a shoulder (can't lift my arm), neck (can't turn my head), back (let's not go there) etc. The regular offenders in this area for me are hips, ankles, back, shoulders, knees, wrists and hands. Right at this moment, in spite of the fact that I am relaxed and as comfortable as I ever get (and have taken pain medication), my left hip, my right shoulder and MY ARSE are in substantial pain. Yes my arse... Not like haemorrhoids (I have given birth and I fully appreciate the epee up the butt joy of that kind of pain - but that isn't it) no it is my coccyx - lucky me! This insignificant, ignored little joint, that has the range of motion of a steel girder at rest, has decided to assert its need for attention. It's been extra insistent for the last few days and I know it was not helped by waiting over two hours to see the doctor this morning. So if you see me walking even more strangely than usual or sitting delicately sideways on a chair you know it's just my resident pain in the arse!
Now the doctor .... hmmmm....what a frustrating morning... I need the doctor to fill in a form for the government - he won't fill it in until I am assessed by a pain clinic - the pain clinic has a twelve month waiting period. I can feel a catch 22 coming on here... My alternatives:-
Just a little background on the way Fibromyalgia (or AUSRRIWCP as it will forthwith be known (NOT)) affects me from a pain perspective. I ache, everywhere from the tips of my toes to my hair follicles, it's a base line low to middle level pain that is OMNIPRESENT! Things hurt all the time and they hurt more when they are moved, flexed, stressed, touched, pushed, pulled, caressed and generally whenever there is any kind of stimulus either from the interior (me asking my body to do something) or from the exterior. If you know what it feels like when you have the flu and you ache all over and your skin hurts then you have some idea of the constant baseline of pain. Then there are the floating sharper more insistent pains and these ones wander around my body with no rhyme or reason. It might be one hip flames up and walking becomes excruciating (I would use a cane but that hurts my hands wrists and shoulders), it could be a shoulder (can't lift my arm), neck (can't turn my head), back (let's not go there) etc. The regular offenders in this area for me are hips, ankles, back, shoulders, knees, wrists and hands. Right at this moment, in spite of the fact that I am relaxed and as comfortable as I ever get (and have taken pain medication), my left hip, my right shoulder and MY ARSE are in substantial pain. Yes my arse... Not like haemorrhoids (I have given birth and I fully appreciate the epee up the butt joy of that kind of pain - but that isn't it) no it is my coccyx - lucky me! This insignificant, ignored little joint, that has the range of motion of a steel girder at rest, has decided to assert its need for attention. It's been extra insistent for the last few days and I know it was not helped by waiting over two hours to see the doctor this morning. So if you see me walking even more strangely than usual or sitting delicately sideways on a chair you know it's just my resident pain in the arse!
Now the doctor .... hmmmm....what a frustrating morning... I need the doctor to fill in a form for the government - he won't fill it in until I am assessed by a pain clinic - the pain clinic has a twelve month waiting period. I can feel a catch 22 coming on here... My alternatives:-
- Get another doctor
- Get the current doctor (please don't make me wait another 2 1/2 hours!!!) to give me a referral to a different pain clinic and hope their wait list is shorter, OR
- Give up.
Now anyone with Fibromyalgia knows how immensely appealing it is to just give up. Lots of people who have Fibro suffer from chronic fatigue syndrome and I'm not sure if I do or I don't. Certainly I don't have much energy and my vim (whatever that is) and vigour are probably rating about 20 % or what they were even five years ago - so maybe I do... What I do know is that being in pain is really tiring, it wears you out. I could spin that in a more exciting way and suggest I am constantly on an adventurous quest for a more comfortable position and it is exhausting - no that didn't work... looks like my marketing skills are abandoning me. But if I give up... well, that will cause other, perhaps more serious, problems.
I've decided to try and get the doctor to give me an alternative referral and in the mean time - if I can summon up the energy I will look for a better and more helpful doctor.
All in all - the whole thing is just a giant pain in the arse!
Subscribe to:
Posts (Atom)