The jury is still out on whether I actually HAVE Mastocytosis or not. One Oncologist thinks I do, my Immunologist thinks it'd explain loads of things (and my blood/urine tests point in this direction) and the second opinion Oncologist/Hematologist has just done the bone marrow biopsy. Nothing like being in limbo.
The pain in my gut subsided today, but am still waiting for solid poo to come out of my bottom. (Sorry about the visual.) However, I am not tolerating the cold very well at all. AT ALL. Everyone else feels fine in the house, but me. It's 22 degrees on the thermostat, but it must be wrong because the cold that IS in house has found its way into my bones. My knees are the most painful part of my skeletal system. Some days, I just want to hack them off at the thighs. I've given up crying when they hurt (which isn't just for a few hours...it goes on for weeks, days, is continuous and it's not arthritis). It's worse when my gut AND bones hurt. There's not really any point in taking painkillers for the pain because that will only lead to the eventual demise of my liver (and as I had funky liver readings last year, that were conducive with long-term excessive acetaminophen use. I was popping 6-9, sometimes 12, extra-strength Tylenol and arthritis formula daily to deal with myself...I finally figured that I'd better just suck up the pain. The liver is vital to my living a long, healthy life and let's face it, loss of liver function on TOP of all of this would be really bad.) I get serious pain in my long bones too. I have fractured my tibia and ankle three times in the past three years. Not by doing anything much either (ok, except for the one time I was carrying too many forestry fire packs into a bush fire.) I was just walking around and snap.
Do I need to mention the fatigue? When you wake up and your get up and go has gone, and you want it to be there and it's nowhere to be found...it bites. Some days, I'm just soooooooo cold, and my bones hurt so badly that all I can do is sit under the electric blanket and wait for someone to come and light a fire for me. This task usually falls to my husband. But not before I have a giant fit about being cold and how ridiculous it is that I have to go OUTSIDE to get into the basement to light the wood furnace. I am seriously too cold to get warm sometimes. Unless it's summer, in which case, I can't stand the heat. It makes me feel sick to my stomach and it's instant flu-like draining sensation. Can't win. Unless it's Autumn and just right.
My world has gotten smaller and smaller over this past year. Repeated anaphylactoid episodes (that I have recently learned differ from ANAPHYLAXIS in that they aren't IGe-mediated responses...just random trigger responses) have taken their toll and have affected EVERY angle of my life. I'd be inhuman NOT to be affected by it all. Tonight my husband is at parent-teacher interviews with the children, and I am not with them. This is the first year that I've not actively been involved with my children's school and conversing face to face with their teachers. I find this really hard to deal with. I only get to see what masticated projects make it home. The school is full of latex (one of my deadly and known triggers.) This is just one of the many losses I've incurred since last October when a bee/wasp (?) sting almost killed me and all of a sudden I was reacting to EVERYTHING.
Even my family doctor called me a few weeks ago to let me know that she wouldn't able to care for me anymore due to the severity of my latex allergy and the presence of it in her office. So far though, she's been fabulous in dealing with me in Emergency and Ambulatory Care at the local hospital. And, she hasn't totally given up on me. Mostly because she considers me a 'serious' patient and I have a lot going on. PHew...almost another loss. BUT, the silver lining here is that my local hospital is latex-free.
In my recent appeal to my Canadian Long Term Disabilty claim, I listed some of the major 'losses' in my life. When your Immunologist and every other doctor that you see in Emergency tells you that the best place for you to be is at home (now that it's been mostly secured), and best not to gander elsewhere (unknown triggers lurking...) and that this "must be sooooo difficult for you" (and look at you with sympathetic, pitying eyes), the list of 'losses' gets bigger and bigger, while the world that you live in gets smaller and smaller. At least for me it has. I expend a lot of energy on this long term disability claim, not because I want it, but because we need it and I qualify by all definitions...it sucks that I have to fight THIS hard for such a small amount of money. Not having been able/permitted to work for over a year though is devastating financially (and this is where guilt, and those feelings of inadequacy rear their heads) and this fight is sooooooooooooooo draining. I had an anaphylactoid reaction when I read their decision to deny me benefits because it stressed me out so badly. Stupid. I've been working on those feelings too. Need to. I can't have myself responding to this kind of news in this manner. My claim, by the way, is based soley (at the moment) on the severity of the latex allergy and responses. I'm not sure if a confirmed second opinion diagnosis of Systemic Mastocytosis would help. Yet another loss.
I am no longer permitted to drive. Due to continued blackouts/loss of consciousness episodes. In the medical world they call that 'syncope'. I understand the reasons that I am considered a risk on the road. However, I live in the middle of nowhere, on a dirt road, with no close neighbours and the nearest town is 20 minutes drive away. Be careful when you wish for a bit more solitude in your life...like me, you may get it in MUCH bigger ways than you wished for.
It'd be all too easy to be utterly depressed about all of this. However, it wouldn't actually help anything. It certainly won't make me feel better. And, of course, depression is part of this. I'm opting to face my depression and work through the feelings of inadequacy, loss, dependency, fear, uselessness, guilt and grief that rear their ugly heads when I'm already pms'ing or not having a good day. I took myself off the anti-depressants. NOT RECOMMENDED. Nor doing it cold turkey, like I did. But I really wanted to know how FIONA felt; and who I was, warts and all.
For me, fear of being dependent on others, has been the biggest challenge. Especially concerning my spouse. Fear of having to rely on my husband (who is wonderful in so many ways) because he often doesn't really understand why I get so panicked or freaked out when he doesn't take care of something that I can't take care of, feel I need him to take care of and in his world, isn't really all that important to him, so he just doesn't do it...whatever it is, is huge. HUGE. I have considered that perhaps this is a life-lesson is accepting what IS, in things that I cannot change and finding the wisdom/courage to let those things/ideas go. However, the fear of not being able to rely on my husband continues to be there. And this bites too. The fear isn't his responsiblity though. Some people might say that it is. We married for better or for worse...and Masto Days are the worst. (I guess even that statement is relative...there's alwasy someone worse off than you, right?)
Anyway, it's 8pm now, and I'm exhausted. I didn't really nap today (like I have to if I want to stay up past 6pm and not be a total grumpy bear.) So, I know if you have this, you'll understand that I'm done.
The pain in my gut subsided today, but am still waiting for solid poo to come out of my bottom. (Sorry about the visual.) However, I am not tolerating the cold very well at all. AT ALL. Everyone else feels fine in the house, but me. It's 22 degrees on the thermostat, but it must be wrong because the cold that IS in house has found its way into my bones. My knees are the most painful part of my skeletal system. Some days, I just want to hack them off at the thighs. I've given up crying when they hurt (which isn't just for a few hours...it goes on for weeks, days, is continuous and it's not arthritis). It's worse when my gut AND bones hurt. There's not really any point in taking painkillers for the pain because that will only lead to the eventual demise of my liver (and as I had funky liver readings last year, that were conducive with long-term excessive acetaminophen use. I was popping 6-9, sometimes 12, extra-strength Tylenol and arthritis formula daily to deal with myself...I finally figured that I'd better just suck up the pain. The liver is vital to my living a long, healthy life and let's face it, loss of liver function on TOP of all of this would be really bad.) I get serious pain in my long bones too. I have fractured my tibia and ankle three times in the past three years. Not by doing anything much either (ok, except for the one time I was carrying too many forestry fire packs into a bush fire.) I was just walking around and snap.
Do I need to mention the fatigue? When you wake up and your get up and go has gone, and you want it to be there and it's nowhere to be found...it bites. Some days, I'm just soooooooo cold, and my bones hurt so badly that all I can do is sit under the electric blanket and wait for someone to come and light a fire for me. This task usually falls to my husband. But not before I have a giant fit about being cold and how ridiculous it is that I have to go OUTSIDE to get into the basement to light the wood furnace. I am seriously too cold to get warm sometimes. Unless it's summer, in which case, I can't stand the heat. It makes me feel sick to my stomach and it's instant flu-like draining sensation. Can't win. Unless it's Autumn and just right.
My world has gotten smaller and smaller over this past year. Repeated anaphylactoid episodes (that I have recently learned differ from ANAPHYLAXIS in that they aren't IGe-mediated responses...just random trigger responses) have taken their toll and have affected EVERY angle of my life. I'd be inhuman NOT to be affected by it all. Tonight my husband is at parent-teacher interviews with the children, and I am not with them. This is the first year that I've not actively been involved with my children's school and conversing face to face with their teachers. I find this really hard to deal with. I only get to see what masticated projects make it home. The school is full of latex (one of my deadly and known triggers.) This is just one of the many losses I've incurred since last October when a bee/wasp (?) sting almost killed me and all of a sudden I was reacting to EVERYTHING.
Even my family doctor called me a few weeks ago to let me know that she wouldn't able to care for me anymore due to the severity of my latex allergy and the presence of it in her office. So far though, she's been fabulous in dealing with me in Emergency and Ambulatory Care at the local hospital. And, she hasn't totally given up on me. Mostly because she considers me a 'serious' patient and I have a lot going on. PHew...almost another loss. BUT, the silver lining here is that my local hospital is latex-free.
In my recent appeal to my Canadian Long Term Disabilty claim, I listed some of the major 'losses' in my life. When your Immunologist and every other doctor that you see in Emergency tells you that the best place for you to be is at home (now that it's been mostly secured), and best not to gander elsewhere (unknown triggers lurking...) and that this "must be sooooo difficult for you" (and look at you with sympathetic, pitying eyes), the list of 'losses' gets bigger and bigger, while the world that you live in gets smaller and smaller. At least for me it has. I expend a lot of energy on this long term disability claim, not because I want it, but because we need it and I qualify by all definitions...it sucks that I have to fight THIS hard for such a small amount of money. Not having been able/permitted to work for over a year though is devastating financially (and this is where guilt, and those feelings of inadequacy rear their heads) and this fight is sooooooooooooooo draining. I had an anaphylactoid reaction when I read their decision to deny me benefits because it stressed me out so badly. Stupid. I've been working on those feelings too. Need to. I can't have myself responding to this kind of news in this manner. My claim, by the way, is based soley (at the moment) on the severity of the latex allergy and responses. I'm not sure if a confirmed second opinion diagnosis of Systemic Mastocytosis would help. Yet another loss.
I am no longer permitted to drive. Due to continued blackouts/loss of consciousness episodes. In the medical world they call that 'syncope'. I understand the reasons that I am considered a risk on the road. However, I live in the middle of nowhere, on a dirt road, with no close neighbours and the nearest town is 20 minutes drive away. Be careful when you wish for a bit more solitude in your life...like me, you may get it in MUCH bigger ways than you wished for.
It'd be all too easy to be utterly depressed about all of this. However, it wouldn't actually help anything. It certainly won't make me feel better. And, of course, depression is part of this. I'm opting to face my depression and work through the feelings of inadequacy, loss, dependency, fear, uselessness, guilt and grief that rear their ugly heads when I'm already pms'ing or not having a good day. I took myself off the anti-depressants. NOT RECOMMENDED. Nor doing it cold turkey, like I did. But I really wanted to know how FIONA felt; and who I was, warts and all.
For me, fear of being dependent on others, has been the biggest challenge. Especially concerning my spouse. Fear of having to rely on my husband (who is wonderful in so many ways) because he often doesn't really understand why I get so panicked or freaked out when he doesn't take care of something that I can't take care of, feel I need him to take care of and in his world, isn't really all that important to him, so he just doesn't do it...whatever it is, is huge. HUGE. I have considered that perhaps this is a life-lesson is accepting what IS, in things that I cannot change and finding the wisdom/courage to let those things/ideas go. However, the fear of not being able to rely on my husband continues to be there. And this bites too. The fear isn't his responsiblity though. Some people might say that it is. We married for better or for worse...and Masto Days are the worst. (I guess even that statement is relative...there's alwasy someone worse off than you, right?)
Anyway, it's 8pm now, and I'm exhausted. I didn't really nap today (like I have to if I want to stay up past 6pm and not be a total grumpy bear.) So, I know if you have this, you'll understand that I'm done.
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