So, I went to the doctor today. I hate going there; firstly, because it is physically and emotionally tiring, and secondly because I am always nervous when I go. I have this feeling that I am kind of wasting the doctor's time, coz there are probably lots of sicker people that she could be spending her time on :S. Anyways, I had my fourth needle in the bum for iron deficiency while I was there (seriously, I am getting so sick of them! AND I HAVE SIX MORE TO GO!) They are helping a little, though. I feel a little less foggy-brained, and more awake.
I also discussed my pain issues with my doctor today. The tablets that she prescribed have been doing nothing for my pain, and it is getting so bad. Often, I can't type, can't walk (or I walk with a pretty obvious limp), and can't sleep because of it. It is the kind of pain where you can't think of much else, and you keep going "why is my arm killing me" and then remembering - o, it's that weird unexplained pain again :P. I mean, I have always had pretty severe chronic pain with my ME/CFS, but this is just different. Worse, and more long-lasting and widespread. I'm limping badly all the time now instead of just on bad days.
I was nervous that my doctor wouldn't understand, or would think I was just being silly - but she was really very understanding. She wrote a prescription for prednisolone, which is a corticosteroid that I used to take for severe asthma when I was a kid. She thinks might help the pain and inflammation. I hope it does; this pain is just so frustrating! I just feel like crying like a baby all the time because of it! Apparently, if this tablet doesn't work, it rules out a whole heap of inflammatory conditions. Ruling stuff out is nice, but I would rather have a solid answer - "You have this. This will cure it". Unfortunately, things never seem to work like that :P.
I also asked my doctor about my hypermobility again, and she said that I probably have Ehlers-Danlos Syndrome, but that there is no blood test that will prove it. She said again that she is going to send me to a rhumatologist, but didn't write out a referral today. I know I am probably being impatient, but want to be better faster. I don't like delays; but I guess things need to be ruled out or in first.
Anyways, it is about my bed time, I think. Nighty night!
~Adrielle =)
Tuesday, August 31, 2010
Monday, August 30, 2010
I shouldn't Google my health concerns! Lol!
So, I am tired, nauseous, in pain and can't sleep. I'm lying in bed in the dark googling stuff on my iPad. Bad idea. My pain, and my finger clicking out today made me google "dislocations" and "joint hyper mobility syndrome" (which my doctor says I have). Well, from my sleepy googlings, it seems JHS is generally most severe during childhood, and improves as you get older. Mine is exactly the opposite.
I was always a flexible kid, but I only started dislocating bones at the age of 11 years. By my mid teens, I had dislocated my knees dozens of times, and had begun to dislocate my shoulders. By the time I finished high school, my dislocations were happening roughly once a month, and my affected joints included toes, wrists, thumbs, shoulders, and knees. I am now 24, and I dislocate a bone each week, fingers, wrists, hands, knees, thumbs, shoulders, toes. Yes, I'm seeing a disturbing pattern... Couple that with my worsening joint and muscle pain (which I put down to ME/CFS/FM) and I am kinda scared of my future!
Anyway, recently I had an abnormal blood test that showed inflammation similar to what you would get with rheumatoid arthritis, but my doctor doesn't think I have that. A few times, my doctor has mentioned testing me for connective tissue disorders (like Ehlers-Danlos syndrome) but she never has quite gotten around to it :p. Using the magic of google, it seems that I do have a lot of symptoms characteristic of EDS. Reading through peoples' descriptions of it, I was like OMGosh! That's me!
-loose, unstable hypermobile joints with many dislocations (mmhmm)
-rolling/spraining ankles frequently (yup - especially when I used to do acrobatics)
-bruising easily (always assumed it was ME/CFS related, but I've always bruised more easily than other ppl seem to. I think I get that from my mum)
-often not diagnosed till adulthood (I'm 24)
-muscle fatigue and pain (well some of that is probably just ME/CFS, but my pain is getting a lot worse lately, so I'm looking for reasons why)
-myalgia and arthralgia (ME/CFS symptoms, but mine have got progressively worse lately)
-short sightedness (gotta pick up my new contact lenses tomorrow lol)
-increased risk of pneumothorax (been there, survived that)
-weird sensation of joints "pulling" by themselves (especially in my shoulders, I assumed it was ME/CFS related)
-heart palpitations and other heart problems (I get em from ME/CFS, so I guess I wouldn't know)
I have an appointment with my doctor tomorrow (for my weekly iron injection... Fun fun) so I really want to remember to mention this to her (although I am probably just clutching at straws trying to find a reason for why I keep dislocating, lol). I am also going to tell her that the pain medication she gave me isn't doing anything. (I mean, I had to swordfight on Puzzle Pirates using my knuckles on the space bar because my fingers were too sore to straighten :p that is SO not on! Lol! I'd also like to be able to walk around the house without the majorly hunched over limp, and without holding onto walls and furniture...) Anyway, I guess I should try to get some sleep again. Nighty night!
~Adrielle :D
I was always a flexible kid, but I only started dislocating bones at the age of 11 years. By my mid teens, I had dislocated my knees dozens of times, and had begun to dislocate my shoulders. By the time I finished high school, my dislocations were happening roughly once a month, and my affected joints included toes, wrists, thumbs, shoulders, and knees. I am now 24, and I dislocate a bone each week, fingers, wrists, hands, knees, thumbs, shoulders, toes. Yes, I'm seeing a disturbing pattern... Couple that with my worsening joint and muscle pain (which I put down to ME/CFS/FM) and I am kinda scared of my future!
Anyway, recently I had an abnormal blood test that showed inflammation similar to what you would get with rheumatoid arthritis, but my doctor doesn't think I have that. A few times, my doctor has mentioned testing me for connective tissue disorders (like Ehlers-Danlos syndrome) but she never has quite gotten around to it :p. Using the magic of google, it seems that I do have a lot of symptoms characteristic of EDS. Reading through peoples' descriptions of it, I was like OMGosh! That's me!
-loose, unstable hypermobile joints with many dislocations (mmhmm)
-rolling/spraining ankles frequently (yup - especially when I used to do acrobatics)
-bruising easily (always assumed it was ME/CFS related, but I've always bruised more easily than other ppl seem to. I think I get that from my mum)
-often not diagnosed till adulthood (I'm 24)
-muscle fatigue and pain (well some of that is probably just ME/CFS, but my pain is getting a lot worse lately, so I'm looking for reasons why)
-myalgia and arthralgia (ME/CFS symptoms, but mine have got progressively worse lately)
-short sightedness (gotta pick up my new contact lenses tomorrow lol)
-increased risk of pneumothorax (been there, survived that)
-weird sensation of joints "pulling" by themselves (especially in my shoulders, I assumed it was ME/CFS related)
-heart palpitations and other heart problems (I get em from ME/CFS, so I guess I wouldn't know)
I have an appointment with my doctor tomorrow (for my weekly iron injection... Fun fun) so I really want to remember to mention this to her (although I am probably just clutching at straws trying to find a reason for why I keep dislocating, lol). I am also going to tell her that the pain medication she gave me isn't doing anything. (I mean, I had to swordfight on Puzzle Pirates using my knuckles on the space bar because my fingers were too sore to straighten :p that is SO not on! Lol! I'd also like to be able to walk around the house without the majorly hunched over limp, and without holding onto walls and furniture...) Anyway, I guess I should try to get some sleep again. Nighty night!
~Adrielle :D
Tuesday, August 10, 2010
Doctor's Visit, and My Day
Well, today was a stressful, tiring and long day for me! I had to go to the doctor in the morning, and I was nervous about going. The purpose of the visit was to get the results of all the blood tests that I had a week and a bit ago. It turns out that some of them showed abnormalities. My cholesterol still isn't good (although the good cholesterol to bad cholesterol ratio has gotten a lot better!). I had a slightly abnormal liver test (but all the other liver results were good), and tests showing inflammation or infection somewhere in my body came back higher than last time too (the result has been steadily rising since 2007, which to me is worrying. My doctor says she can't find where the inflammation or infection is, and if she didn't know better she would think I had arthritis or something... I want to know!). Anyway, another test that came back bad was my iron count. It has always been lowish, but it was worse than usual - so now I have to have needles in the bum every week. Yeah, my life rocks :p. Apparently, the needles cause permanent staining, as well... Nice. I hope I get a bit more energy from them though. Just having ME/CFS has to be better than having ME/CFS + anaemia!
I'm being referred to a specialist in Melbourne about my ME/CFS. I don't really know if/how they will help, but at least I feel like I am trying to find a solution to this illness! Lol. I hope they might be able to find out what is causing the inflammation/infection blood test results too :) and I hope they are nice. I hate telling all my history to new ppl :s. Melbourne is a pretty long way away from where I live, which is good in one way because going to see a specialist there means staying there for a few days. I am hoping to go to the aquarium while we are there! :D And I'd love to meet my cousin's baby! Truthfully, though, I generally spend my time away sleeping and suffering horrible symptoms because actually traveling takes so much out of me!
Anyway, after the doctor, we went shopping. I was way tired and sore, but it was so good to be out of the house. I got some new beads and a beading loom. I was annoyed that the craft shop didn't have the colour of cross stitch thread I needed to finish my sewing :(. I will have to try somewhere else. I also bought another visual diary/blank sketchbooky jounally thing. I have filled so many of them! Lol - I just like decorating and writing and drawing and pasting things in... This one has a pretty pink cover :D.
In other news, I lost one of my silver sharks yesterday :(. My Artemis axolotl is also still sick. She is refusing to eat anything, and it has been almost a week and a half. She is so skinny and weak. I love her so much, and it is breaking my heart to see her like this! We got some chicken livers today. I had hoped it might tempt her, but she just looked at it, and walked away (pushing past it). There are some live black worm larvae on the floor of her tank, just in case she feels hungry when I'm not around. I don't know whether she has eaten any of them or not, but at least I feel like if she gets hungry, she has something to eat (and being alive, they stay fresh). Almond very much enjoyed the liver, lol!
Well, Safari isn't letting me scroll up or down to proof-read any of what I am writing, so I hope this post isn't too incoherent! Lol!
~Adrielle =D
I'm being referred to a specialist in Melbourne about my ME/CFS. I don't really know if/how they will help, but at least I feel like I am trying to find a solution to this illness! Lol. I hope they might be able to find out what is causing the inflammation/infection blood test results too :) and I hope they are nice. I hate telling all my history to new ppl :s. Melbourne is a pretty long way away from where I live, which is good in one way because going to see a specialist there means staying there for a few days. I am hoping to go to the aquarium while we are there! :D And I'd love to meet my cousin's baby! Truthfully, though, I generally spend my time away sleeping and suffering horrible symptoms because actually traveling takes so much out of me!
Anyway, after the doctor, we went shopping. I was way tired and sore, but it was so good to be out of the house. I got some new beads and a beading loom. I was annoyed that the craft shop didn't have the colour of cross stitch thread I needed to finish my sewing :(. I will have to try somewhere else. I also bought another visual diary/blank sketchbooky jounally thing. I have filled so many of them! Lol - I just like decorating and writing and drawing and pasting things in... This one has a pretty pink cover :D.
In other news, I lost one of my silver sharks yesterday :(. My Artemis axolotl is also still sick. She is refusing to eat anything, and it has been almost a week and a half. She is so skinny and weak. I love her so much, and it is breaking my heart to see her like this! We got some chicken livers today. I had hoped it might tempt her, but she just looked at it, and walked away (pushing past it). There are some live black worm larvae on the floor of her tank, just in case she feels hungry when I'm not around. I don't know whether she has eaten any of them or not, but at least I feel like if she gets hungry, she has something to eat (and being alive, they stay fresh). Almond very much enjoyed the liver, lol!
Well, Safari isn't letting me scroll up or down to proof-read any of what I am writing, so I hope this post isn't too incoherent! Lol!
~Adrielle =D
Sunday, August 1, 2010
A RANT! (And some other stuff)
Well, the last couple of days have been really hard. My CFS/ME symptoms have been bad, and my mind has been all over the place. On top of the usual exhaustion, pain and the multitude of other symptoms that I get, I was so nauseous all day today that I could barely eat or shower, and my computer screen was giving me motion sickness! I am feeling stressed and worried that what I thought was my symptoms getting better and paving the way to a long-awaited "good patch" was just a cruel false alarm. I try not to be too negative, but seriously - sometimes everyone needs to rant! lol =D.
Anyway, to top everything off, a so-called (now x-) friend (whom I have had for ages, and whom I know thinks I am a hypochondriac because this person does not believe in ME/CFS) was the last straw - I guess this person is the real reason that I am ranting! In the past, this person has told me that 'people create their own circumstances', and basically that 'people don't just get sick, it is because of something that they have done'. This person also once said that if I 'stopped thinking negatively, and stopped believing that I had an illness, and that if I told myself that I would wake up cured on a certain day, it would happen'. Tonight, this person really got to me again. I don't think I will be talking to them again (the problem with me is that I just talk to everyone, though! I can't seem to help myself! :S).
Anyways, I had to have my latest round of blood tests this week, which is always fun! I had to fast for twelve hours, so after I had the blood tests I got some sushi =). I always think, it would be nice if the blood tests found something that was causing my symptoms and that could be quickly and easily fixed, and that I didn't have ME/CFS, they had just made a mistake! lol - sadly, that hasn't happened yet!
On top of my health worries (and x-friends) I am worried about my axolotl, Artemis. She is acting sick, and I don't know why. She is trying to get oxygen all the time, like she just can't get enough. We put another air stone in the tank in the hope that it might help her, but she is hardly eating anything, and I am worried sick about her! She is my baby, and was my birthday present last year. I look after her and her tank-mate, Almond myself. I vacuum their tank and feed them, no matter how sick I am. My axolotls are incredibly special to me! I hope with all my heart that she is going to be ok.
On a more positive note, I have been working on my cross-stitch (the big orchid one that I mentioned in an earlier blog). It is about a sixth of the way done now (I think) and so far, it has no mistakes. I am proud of it =D! Speaking of proud, I am trying to get a list of my skills, experience and achievements together. I guess what I am making is similar to a resume, although I am too ill to work at the moment. I would just like to be organised, so that when I do feel better, I have these things ready to go! I have to clean out my drawers - the ones that contain all my bank statements and university papers and things, but haven't had the energy.
Anyways, I have an assignment to do for my 3D art and animation course. I keep putting it off because I just can't concentrate. I have started it, I just haven't managed to get very far! Lucky my course doesn't have any fixed deadlines! I hope I can find a time when my mind is clearer soon, so that I can get it finished and submitted =).
~Adrielle =)
Anyway, to top everything off, a so-called (now x-) friend (whom I have had for ages, and whom I know thinks I am a hypochondriac because this person does not believe in ME/CFS) was the last straw - I guess this person is the real reason that I am ranting! In the past, this person has told me that 'people create their own circumstances', and basically that 'people don't just get sick, it is because of something that they have done'. This person also once said that if I 'stopped thinking negatively, and stopped believing that I had an illness, and that if I told myself that I would wake up cured on a certain day, it would happen'. Tonight, this person really got to me again. I don't think I will be talking to them again (the problem with me is that I just talk to everyone, though! I can't seem to help myself! :S).
On top of my health worries (and x-friends) I am worried about my axolotl, Artemis. She is acting sick, and I don't know why. She is trying to get oxygen all the time, like she just can't get enough. We put another air stone in the tank in the hope that it might help her, but she is hardly eating anything, and I am worried sick about her! She is my baby, and was my birthday present last year. I look after her and her tank-mate, Almond myself. I vacuum their tank and feed them, no matter how sick I am. My axolotls are incredibly special to me! I hope with all my heart that she is going to be ok.
On a more positive note, I have been working on my cross-stitch (the big orchid one that I mentioned in an earlier blog). It is about a sixth of the way done now (I think) and so far, it has no mistakes. I am proud of it =D! Speaking of proud, I am trying to get a list of my skills, experience and achievements together. I guess what I am making is similar to a resume, although I am too ill to work at the moment. I would just like to be organised, so that when I do feel better, I have these things ready to go! I have to clean out my drawers - the ones that contain all my bank statements and university papers and things, but haven't had the energy.
Anyways, I have an assignment to do for my 3D art and animation course. I keep putting it off because I just can't concentrate. I have started it, I just haven't managed to get very far! Lucky my course doesn't have any fixed deadlines! I hope I can find a time when my mind is clearer soon, so that I can get it finished and submitted =).
~Adrielle =)
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