It happens every time. I go in for juicing, then set the date for the next one and work my diary around that. As the date approaches, I am filled with dread that won't go away. I hate the juicings. I hate the needles. Most of all I hate the side effects that always happen. But I have no choice; I have to just push myself and do it.
Had to have a couple of blood tests in the last two weeks. Those are relatively easy to procrastinate by a few days, but eventually I have to do them. They actually weren't so bad - good operators who do the small talk to distract me as I stare up at the ceiling. And afterwards, it doesn't seem as bad as the anticipation warranted. But that doesn't reduce it at all.
I have to consciously push out those feelings of dread as the juicing day approaches. I have my little rituals: go in to the office for a quiet cup of tea before taking a taxi to the hospital. Take it easy afterwards and usually book a massage for the afternoon, and reserve the next day or so as rest. Does it help? Who knows. Does it reduce my anxiety and dread? Sadly, no.
So off we go again tomorrow.
Showing posts with label juice. Show all posts
Showing posts with label juice. Show all posts
Thursday, March 11, 2010
Sunday, November 15, 2009
Blood Patch
With apologies to Neil Young, it's a case of out of the arm, and into the back. That's probably enough of the song lyric mash-ups too. The blood patch is a procedure where they draw some blood out of your arm, and inject it into the spot where they previously did the lumbar puncture (or epidural block, or whatever). The blood congeals, and closes up the hole in the dura and thus stops the CSF leak. That's what is supposed to happen, and the good news is that it worked! The headache subsided after a short time and have all but gone. I've been resting all weekend, and looking forward (not!) to another infusion on Monday.
I found the protocol differences between Australian hospitals and the Mayo clinic to be quite interesting. At the Mayo, lumbar punctures for the purpose of extracting some CSF are mostly done by a technician without the aid of imaging, and they only require you to rest for 30 minutes following the procedure. When I had mine done earlier this year, they did it under x-ray to make sure they found the right spot. It could be my neuro requested that because he knows how much I hate needles, and to make the experience less uncomfortable. The other thing they do here is make you lie flat for 2-4 hours afterwards, to ensure the hole closes, and minimize risk of a CSF leak.
This might just mean that my Mayo Clinic experience is finally over, some days after my return. Have been reflecting on the whole thing, and will post about that shortly.
I found the protocol differences between Australian hospitals and the Mayo clinic to be quite interesting. At the Mayo, lumbar punctures for the purpose of extracting some CSF are mostly done by a technician without the aid of imaging, and they only require you to rest for 30 minutes following the procedure. When I had mine done earlier this year, they did it under x-ray to make sure they found the right spot. It could be my neuro requested that because he knows how much I hate needles, and to make the experience less uncomfortable. The other thing they do here is make you lie flat for 2-4 hours afterwards, to ensure the hole closes, and minimize risk of a CSF leak.
This might just mean that my Mayo Clinic experience is finally over, some days after my return. Have been reflecting on the whole thing, and will post about that shortly.
Friday, November 13, 2009
The tap that keeps on tapping
With apologies to Cyndi Lauper, there's a hole in my back that comes all the way from Rochester. The headache that I've had since last Friday is most likely a result of a CSF leak. This is a side effect of the lumbar puncture I had at the Mayo Clinic, where they stuck a hole in my back to draw out cerebro-spinal fluid, and the hole has not properly closed.
So what's the solution? Poke my back again, and this time inject some of my own blood which will help close the hole. I'm booked into go to shortly to have this procedure done.
This is really getting to me. I agonized as to whether to just keep resting and hope that the hole closed on its own, or to have another uncomfortable procedure to close it, and decided this morning to take this route. It should give me a little more certaintly that the headache will stop once and for all.
Of course I also have to book in for more IVIg juice, and have decided with my neuro to just do one day (instead of the usual two), and do that on Monday after a weekend of rest.
So what's the solution? Poke my back again, and this time inject some of my own blood which will help close the hole. I'm booked into go to shortly to have this procedure done.
This is really getting to me. I agonized as to whether to just keep resting and hope that the hole closed on its own, or to have another uncomfortable procedure to close it, and decided this morning to take this route. It should give me a little more certaintly that the headache will stop once and for all.
Of course I also have to book in for more IVIg juice, and have decided with my neuro to just do one day (instead of the usual two), and do that on Monday after a weekend of rest.
Sunday, September 27, 2009
Reflecting on a New Year
Having celebrated Jewish New Year last week, and on the eve of the holiest day in the Jewish calendar, Yom Kippur, I have been relfecting on the last twelve months in my life in the context of my condition. I read somewhere, that someone was asked: "how did your Jewish New Year go?", and he replied: "I'll tell you at the end of the year". We hope and pray for a good year, and that we be inscribed and sealed in the "good book", however the only test of this is time.
On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!
I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.
On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!
I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.
Wednesday, August 12, 2009
even more juice
Blogger has been playing up lately - very annoying!
I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.
The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.
So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).
I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).
And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.
I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.
The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.
So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).
I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).
And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.
Monday, June 8, 2009
Rest is the key
It's been a couple of treatments since my last posting, and things appear to be on the up. I have formed the view that while steroids reduce side effects, they have an adverse effect on the primary condition itself. Having put in a measurement system for the strength in my fingers, I was very disappointed by the improvement in course I had five weeks ago.
So in this last one, we just used anti-histamines (phenergan), anti-inflammatories (nurofen), and regular pain killers (panadol), and these did a reasonable job of reducing the side effects. The most important thing I have learnt from the last two treatment courses is the value of rest! On each occassion I just went to bed and relaxed for 2-3 days, and that was more effective than any drug.
Of course, I would much rather pop a pill (or ten) than have to take 2-3 days off each month. But alas, it is now clear to me that lifestyle changes are required, and one is just to take it easy, and reduce the pace of my life; particular around treatment time.
This last treatment was after a gap of just one month, and the strength in my index finger is the best it has been for around six weeks. That part is very encouraging. Because of some travel plans, my next treatment will be after just a three-week gap, so I'm hoping that will act as an extra booster, and I can revert to a monthly schedule that is more pro-active with respect to the strength in my fingers.
I'm also now exploring some complementary medicine as a way of dealing with some of the limitations of western medicine, particularly relating to the side effects if IVIg. More to follow in future posts ...
So in this last one, we just used anti-histamines (phenergan), anti-inflammatories (nurofen), and regular pain killers (panadol), and these did a reasonable job of reducing the side effects. The most important thing I have learnt from the last two treatment courses is the value of rest! On each occassion I just went to bed and relaxed for 2-3 days, and that was more effective than any drug.
Of course, I would much rather pop a pill (or ten) than have to take 2-3 days off each month. But alas, it is now clear to me that lifestyle changes are required, and one is just to take it easy, and reduce the pace of my life; particular around treatment time.
This last treatment was after a gap of just one month, and the strength in my index finger is the best it has been for around six weeks. That part is very encouraging. Because of some travel plans, my next treatment will be after just a three-week gap, so I'm hoping that will act as an extra booster, and I can revert to a monthly schedule that is more pro-active with respect to the strength in my fingers.
I'm also now exploring some complementary medicine as a way of dealing with some of the limitations of western medicine, particularly relating to the side effects if IVIg. More to follow in future posts ...
Tuesday, May 5, 2009
Heading for the third round
I guess thinking that I was on a two-month treatment cycle was just me being the eternal optimist. Maybe that is why I get these waves of melancholy and angst? It happens when I actually schedule my next treatment course. Or when I suddenly start to feel pain doing an everyday activity, like pulling off a t-shirt. Perhaps these events trigger a challenge to my natural state of optimism about everything, and that in turn causes me to think about some of the negative aspects of my life with MMN. Or perhaps I am just still learning to accept my condition, and what I really need is to adjust my expectations.
So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!
In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.
This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.
So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!
In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.
This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.
Wednesday, April 1, 2009
juicing again
Walked in this morning for the third and final day of this course of IVIg, and Michelle (Jamie has left the position, so Michelle is running the "juice bar" while they find a replacement) greets me with a friendly "How are you?"
"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.
I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.
So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.
Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?
"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.
I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.
So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.
Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?
Sunday, March 29, 2009
miscalculation
It seems that with all the extra tests I was having, I took my eye off the main game, and overshot the timing for my second treatment. With my 20:20 hindsight glasses, I probably should've done it several weeks ago. In the meantime, my hand strength has deteriorated quite rapidly in the last two weeks, and is now quite severe. Part of the delay was me not wanting to accept the notion of needing regular treatment; I have to deal with that.
The neurologists say that pain is not something that is associated with MMN. Of course, by this they mean that a nerve conduction block will not cause pain. They may be right about this. However, many people with the condition do experience pain, and I think the reason is quite simple. If your hand does not have strength to support movement in certain directions, and you actually do move it or pur pressure in those areas, then the hand collapses. The radial nerve doesn't seem to be that important when it comes to hand movement - I would think gripping (which is the median nerve) was a far more common action that needed support of motor nerves. But surprise, surprise, there are many movements where my hand and wrist collapse in pain - pulling off a t-shirt, turning a steering wheel, shaking hands, ...
Every time I see my neurologist, or discuss it with my pilates instructor (who is also a physiotherapist), I learn so much about the nervous system and biomechanics. While I'm a person who thirsts for knowledge, and people are impressed when I can explain this stuff to them in simple terms, in the back of my mind, I'm thinking "do I really need to know this?"
Anyway, I've started the premedication before the next treatment tomorrow. Hopefully, I will not experience the side effects of last time. This course is just three days, so that might also reduce the chance of side effects. I really need it to work - having my hand like this just isn't doing it for me.
The neurologists say that pain is not something that is associated with MMN. Of course, by this they mean that a nerve conduction block will not cause pain. They may be right about this. However, many people with the condition do experience pain, and I think the reason is quite simple. If your hand does not have strength to support movement in certain directions, and you actually do move it or pur pressure in those areas, then the hand collapses. The radial nerve doesn't seem to be that important when it comes to hand movement - I would think gripping (which is the median nerve) was a far more common action that needed support of motor nerves. But surprise, surprise, there are many movements where my hand and wrist collapse in pain - pulling off a t-shirt, turning a steering wheel, shaking hands, ...
Every time I see my neurologist, or discuss it with my pilates instructor (who is also a physiotherapist), I learn so much about the nervous system and biomechanics. While I'm a person who thirsts for knowledge, and people are impressed when I can explain this stuff to them in simple terms, in the back of my mind, I'm thinking "do I really need to know this?"
Anyway, I've started the premedication before the next treatment tomorrow. Hopefully, I will not experience the side effects of last time. This course is just three days, so that might also reduce the chance of side effects. I really need it to work - having my hand like this just isn't doing it for me.
Friday, March 20, 2009
next juice ...
My hand strength has degraded a fair bit in the last week, and with the protracted diagnosis phase all but complete (just a review discussion with my neurologist next week), I decided that it was finally time for my second IVIg treatment. I ought to be pleased because it has been three months since the first one, which indicates a very slow progression, but instead I'm feeling flat and depressed about it.
Approaching a second treatment course is very different from the first. While I am unable to get excited or enthusiastic about any medical procedure involving a close relationship with a needle, at least with the first treatment, I anticipated a successful outcome, and was not particularly concerned about side effects.
This time around, my anticipation is very different. I think the treatment will result in improvement to my hand strength, but the side effects are a concern, mostly because there hasn't been a satisfactory explanation as to why the headaches went on so long. This time, I am going to premedicate with Prednisone, which should help, but as always, the operative word is "should".
But the other thing that weighs down on me is the long-term future. By embarking on this a second time, I'm accepting it as a part of my life - that regular IVIg "juicings" will now be established as a regular part of my diary. While I was already advised that there is no cure, and that this is just about the only treatment, this is the moment when its permanence is truly felt.
Approaching a second treatment course is very different from the first. While I am unable to get excited or enthusiastic about any medical procedure involving a close relationship with a needle, at least with the first treatment, I anticipated a successful outcome, and was not particularly concerned about side effects.
This time around, my anticipation is very different. I think the treatment will result in improvement to my hand strength, but the side effects are a concern, mostly because there hasn't been a satisfactory explanation as to why the headaches went on so long. This time, I am going to premedicate with Prednisone, which should help, but as always, the operative word is "should".
But the other thing that weighs down on me is the long-term future. By embarking on this a second time, I'm accepting it as a part of my life - that regular IVIg "juicings" will now be established as a regular part of my diary. While I was already advised that there is no cure, and that this is just about the only treatment, this is the moment when its permanence is truly felt.
Friday, March 6, 2009
next juice?
Well, the most recent set of test results (skeletal x-ray and MRI) are in, and everything does seem to point to MMN. Is this a good thing? Hard to tell. They're ruled out plenty of bad things, and it looks far more like MMN than CIDP. I don't know if one is better or worse than the other, so that doesn't mean a lot.
It's been over a week since I finished the Prednisone, and I have noticed a couple of interesting things. Since finishing, my hands seem to feel a bit better - a bit more freedom of movement. That seems to indicate that the Prednisone had a detrimental effect. However, along with that, the headaches have returned. They are far less intense than a couple of months ago when I had the IVIg treatment, but they are still there. Not severe enough for me for me to be taking something every day, but enough that (a) I notice, and (b) there is no answer as to why they are still there. Perhaps they are less severe because the IVIg is wearing off over time?
So now I play the waiting game. Waiting for my hands to weaken sufficiently that I will embark on the next IVIg juicing. Next time, they will premedicate me with Prednisone, which they think might help with the headaches. No-one really knows; it's a case of trial and error. More and more I feel like I'm the patient on an episode of House. The only differences are that over there in TV-land, he works it out in about 35 minutes, it's all over in 42 minutes, and the total elapsed time is a few days. My episode will being played out over years, and in that context, we've only just begun. In fact, all these medical shows are starting to annoy me. I squirm when they do tests on the patients, especially the ones with needles, and I'm starting to understand far more of the medical terms than the typical viewer.
Perhaps the only good news is that it's been some ten weeks since my first IVIg treatment, and my hands are far better than they were before the treatment. To me, that implies a longer than average cycle between treatments. You might notice that I'm not running back for more in a hurry. It's a fine-tuned balance between a rock and a hard place.
It's been over a week since I finished the Prednisone, and I have noticed a couple of interesting things. Since finishing, my hands seem to feel a bit better - a bit more freedom of movement. That seems to indicate that the Prednisone had a detrimental effect. However, along with that, the headaches have returned. They are far less intense than a couple of months ago when I had the IVIg treatment, but they are still there. Not severe enough for me for me to be taking something every day, but enough that (a) I notice, and (b) there is no answer as to why they are still there. Perhaps they are less severe because the IVIg is wearing off over time?
So now I play the waiting game. Waiting for my hands to weaken sufficiently that I will embark on the next IVIg juicing. Next time, they will premedicate me with Prednisone, which they think might help with the headaches. No-one really knows; it's a case of trial and error. More and more I feel like I'm the patient on an episode of House. The only differences are that over there in TV-land, he works it out in about 35 minutes, it's all over in 42 minutes, and the total elapsed time is a few days. My episode will being played out over years, and in that context, we've only just begun. In fact, all these medical shows are starting to annoy me. I squirm when they do tests on the patients, especially the ones with needles, and I'm starting to understand far more of the medical terms than the typical viewer.
Perhaps the only good news is that it's been some ten weeks since my first IVIg treatment, and my hands are far better than they were before the treatment. To me, that implies a longer than average cycle between treatments. You might notice that I'm not running back for more in a hurry. It's a fine-tuned balance between a rock and a hard place.
Sunday, December 28, 2008
that juiced feeling
It's been a week since the initial juice treatment, and so far, there is no encouraging news. The side effects - headaches, nausea, soreness in my neck - are still there. The first two come and go in waves; the soreness is just there. I've had enough of taking stuff that may or may not help, so am doing my best to stay away from the medication. There is way too much stuff inside me at the moment, and I'm not sure that taking more stuff is adding anything. I've even taken a break from the magnesium supplement that I was taking for cramps in my calves (which is another symptom of MMN). Let's just see what happens over the next few days/weeks and hope for the best.
In the meantime, I'm starting to make contact with other doctors around the world who are specialists in this thing. Haven't really developed an approach moving forward, whether for conventional or alternative treatments. My next review appointment is in four weeks, so by then we should have a reasonable idea if this has worked or not. Tom Petty was definitely right - the waiting is the hardest part.
In the meantime, I'm starting to make contact with other doctors around the world who are specialists in this thing. Haven't really developed an approach moving forward, whether for conventional or alternative treatments. My next review appointment is in four weeks, so by then we should have a reasonable idea if this has worked or not. Tom Petty was definitely right - the waiting is the hardest part.
Friday, December 19, 2008
fully juiced
The term TGIF was most appropriate, and in a way it was relieving to finally finish the initial five days of infusions. It took Michelle three tries to get the needle in (which is already two too many), but knowing this was the last time (for a few weeks, at least) meant there was light at the end of the tunnel. Another woman who was just getting hooked up as I was leaving sat cowering in her chair as her needle was being inserted; so I'm not the only needle phobic who has to deal with regular jabs.
The migraines are still there, and not getting better, and now my neck is sore as well. The pill cocktail does subside the pain, though I'm still left feeling quite awful, and haven't really been able to work for most of the week. Had a bit of a chat with the neuro resident and registrar about the side effects, and what to look out for over the coming days. It seems the particular side effects I have experienced are not very common. It seems this particular branch of medicine is one that almost seems like trial and error. They know what I have (but not where it comes from), and know that in the majority of cases, it responds well to this treatment (but not why). Reassuring, eh?
So, to sum up, a week of my life has all but disappeared, and all I have to show for it are a few holes in my arm, a few DVDs watched, and a nasty headache. Hoping that the headaches will subside and the treatment will start to have an effect, but at the moment, the overwhelming feeling is one of despondency.
The migraines are still there, and not getting better, and now my neck is sore as well. The pill cocktail does subside the pain, though I'm still left feeling quite awful, and haven't really been able to work for most of the week. Had a bit of a chat with the neuro resident and registrar about the side effects, and what to look out for over the coming days. It seems the particular side effects I have experienced are not very common. It seems this particular branch of medicine is one that almost seems like trial and error. They know what I have (but not where it comes from), and know that in the majority of cases, it responds well to this treatment (but not why). Reassuring, eh?
So, to sum up, a week of my life has all but disappeared, and all I have to show for it are a few holes in my arm, a few DVDs watched, and a nasty headache. Hoping that the headaches will subside and the treatment will start to have an effect, but at the moment, the overwhelming feeling is one of despondency.
Wednesday, December 17, 2008
third juice
The positive feeling soon after a juicing tends to fade with the onset of side effects like headaches and nausea. These were quite unpleasant, and remained until today, when I saw a doctor about them, and they gave me a few pills which seemed to help for a few hours. They don't give you any to take home, but were kind enough to recommend something I can buy over the counter. Fortunately, I've never been one to suffer severe headaches, although it did interest me to see that the medication for both headache and nausea is labelled as being for migraine. So, perhaps this is a migraine? Something else to research.
I'm over the hump: three down; just two to go, for this initial batch. Still not looking forward to it. While the infusions only takes 3-4 hours of my day, I'm left feeling like not doing anything at all, except lie down. It's really not a feeling I enjoy. I really hope this fades quickly once the course of treatment is finished, and I can start feeling "normal" again next week.
I'm over the hump: three down; just two to go, for this initial batch. Still not looking forward to it. While the infusions only takes 3-4 hours of my day, I'm left feeling like not doing anything at all, except lie down. It's really not a feeling I enjoy. I really hope this fades quickly once the course of treatment is finished, and I can start feeling "normal" again next week.
Tuesday, December 16, 2008
second juice
Today's juice was definitely a far less uncomfortable experience, which is encouraging. Perhaps one day soon I won't be sick with the anticipation. Of course, as usual, the expectation is always more than the event itself. "Buy on the rumour; sell on the fact" is the old market adage, and I have seen it enough times that I know it is true.
I think I've had this thing for about 3 years or so; that was when I first started experiencing weakness and pain in my hands. Because I sit at a desk all day and use a computer, the obvious diagnosis was some kind of repetitive strain injury. I made a few changes to the ergonomics of my work environment, and this did help a little. But the muscle weakness continued. It was only some months ago that I finally decided to revisit this, probably prompted by the quite a serious degradation of strength in my hand, and a visit to my local doctor led me to see a neurologist.
They say the juice has quite a rapid effect. Indeed, today I was able to lift my finger for the first time in several years. The pain in my wrist has also reduced. So this is further encouragement that the stuff works. There are headaches, but this is a side effect that is known, and can be dealt with.
I think I've had this thing for about 3 years or so; that was when I first started experiencing weakness and pain in my hands. Because I sit at a desk all day and use a computer, the obvious diagnosis was some kind of repetitive strain injury. I made a few changes to the ergonomics of my work environment, and this did help a little. But the muscle weakness continued. It was only some months ago that I finally decided to revisit this, probably prompted by the quite a serious degradation of strength in my hand, and a visit to my local doctor led me to see a neurologist.
They say the juice has quite a rapid effect. Indeed, today I was able to lift my finger for the first time in several years. The pain in my wrist has also reduced. So this is further encouragement that the stuff works. There are headaches, but this is a side effect that is known, and can be dealt with.
Monday, December 15, 2008
first juice
I had my first infusion today. "Juice" is a much nicer term - with connotations of bright coloured juice franchises mixing the best healthy ingredients into a concoction that is gulped down quickly helping the consumer think they are doing something healthy for themselves. My "juice" is immunoglobin - a blood product that will probably make me feel much better. It was delivered to me intravenously for about three hours this morning.
I hate needles. Really hate them. Watching violent movies or TV is fine, but a shot of someone getting an injection, or intravenous drug use, and I squirm like a little child. So today, Jamie introduced me to the term "needle phobia". Great! They invent terms like this so I don't have to consider myself a woos; instead I can proudly wear the badge of having a phobia. This is a phobia I need to overcome, however, for there are plenty more needles and infusions to come.
They have diagnosed me with multifocal motor neuropathy. The language is important; I won't even get started on the medical terms just yet. I won't say "I have ...", because that implies ownership, a connection. Right now, I'm far more comfortable keeping it at a safe distance. "They diagnosed me ...", it's someone's medical opinion, that's all. So it's not "me".
Met Joe today. They can't even diagnose him. He has something similar, but it doesn't seem to be immune mediated. All they know is that the "juice" works. Recently, he had a relapse, and had to increase the frequency to two days every fortnight. He takes it pretty well. Surrounded by other people who are probably far sicker than me, I feel even more of a woos. Do I really have the right to feel sorry for myself? I'm not that sick, after all. Surely I can live with a few needles and getting juiced every month?
I hate needles. Really hate them. Watching violent movies or TV is fine, but a shot of someone getting an injection, or intravenous drug use, and I squirm like a little child. So today, Jamie introduced me to the term "needle phobia". Great! They invent terms like this so I don't have to consider myself a woos; instead I can proudly wear the badge of having a phobia. This is a phobia I need to overcome, however, for there are plenty more needles and infusions to come.
They have diagnosed me with multifocal motor neuropathy. The language is important; I won't even get started on the medical terms just yet. I won't say "I have ...", because that implies ownership, a connection. Right now, I'm far more comfortable keeping it at a safe distance. "They diagnosed me ...", it's someone's medical opinion, that's all. So it's not "me".
Met Joe today. They can't even diagnose him. He has something similar, but it doesn't seem to be immune mediated. All they know is that the "juice" works. Recently, he had a relapse, and had to increase the frequency to two days every fortnight. He takes it pretty well. Surrounded by other people who are probably far sicker than me, I feel even more of a woos. Do I really have the right to feel sorry for myself? I'm not that sick, after all. Surely I can live with a few needles and getting juiced every month?
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