Hell Week of Health
A week ago, I had written about having screwed up my prescription refills. One of my medications... one which is a mast cell stabilizer and an H1 blocker... and one which is not yet FDA-approved... had fallen through the cracks of my record-keeping and memory which means I forgot to order a refill before I had run out of this medication.
For most prescriptions, people can just run to the local pharmacy to pick up a last minute prescription. I actually do this with any acute problems I am having. I bite the bullet (taking a serious hit in cost) and I buy the prescription locally so that I can start on the medication immediately.
Unfortunately, most of my medications are absurdly expensive and going to our local retail pharmacy is not financially possible for me. For instance, one of my medications, by itself, costs upwards of $40,000 annually. If I bought this medication locally rather than through my insurance plan's mail order program there would be two problems... 1. The cost would be triple that cost. And, 2. It is such an expensive drug that I would need to order it in advance anyway because no pharmacies keep it in stock. So, most of my medications (but not all) are ordered online through my insurance plan mail order pharmacy.
Mail order (I actually order it online but it is delivered by the USPS, UPS or FedEx) introduces a lag in this process. It can take one to three weeks after I request a refill before I have the medication in my hand. Needless to say, I try to stay on top of my 18 or so medications so I am always pre-ordering my prescriptions.
A week ago, one of my prescription bottles was empty... I ran to the cabinet (okay, to be honest, I slowly made my way to the cabinet but in my mind I was running) where I keep bottles of prescriptions... no bottle of this one was there. I instantly realized that I never did order this refill. This one prescription is handled completely differently than the rest...
Since this drug is not FDA-approved, I had to find a pharmacy that would compound this concoction into capsules. I deal with this particular pharmacy on the telephone only since there are no auto-refills online nor a website for this one. I must call. My insurance company is completely out of this one so the cost is all mine. First, I check my bank account and figure out how I will jockey money around so I can afford to place this order because I must pony up the money immediately when I call in the prescription refill. Needless to say, because of these reasons, I definitely remember each conversation I have with this pharmacy on the west coast because it is so out of the ordinary.
I screwed up and I didn't order this medication in time so now I am without this medication for a week at this point... and I won't see it for another week or two. This is exceptionally bad news for my health.
Whenever Systemic Mastocytosis causes a nosedive in health, it is life-threatening because the primary symptom of the myriad of symptoms is idiopathic anaphylaxis. There are other long term issues which are life-threatening as well but, to keep things simple, anaphylaxis is my immediate and primary concern.
Occasionally, I miss one of four daily doses of medications (a cocktail of medications which is different at different times of the day). When I miss just a single dose (for instance, if I was distracted by an event we are attending, or a party at someone's house, or if I just sleep through it), my health crashes into anaphylaxis within three or four hours after the missed dose. I mention this to explain how important all of my medications are to my daily survival. If missing just one dose causes life-threatening symptoms within a few hours, the medications are definitely needed. Actually, the crashing health is always what reminds me that I missed a dose of medications!
Now, I've gone a full week without one of my key medications... a combination of mast cell stabilizer and H1 blocker. Within a couple of days without this one medication, my health took a serious nosedive...
The cascade of poor health started with narrowing vision, leg weakness, dizziness and relatively mild difficulty breathing... all the early signs of impending anaphylaxis. I pounded some emergency medications including epinephrine (which is a whole other frustrating story) in an attempt to quickly stabilize my body.
I'm trying to add extra, but different, H1 blockers and a little bit extra of my $40,000/year mast cell stabilizer but it is not the same as using this drug I am now missing. My health is continuing on its continuous dive.
Breathing is an issue. Fatigue is always an issue but it is worse this week. I'm dizzy... weak... and many of the neurological symptoms I had before all my medications have helped stabilize my health have returned (such as great difficulty getting my legs to cooperate with my brain, weakness, tremors, vision issues and probably a few other neurological symptoms I am forgetting about right now). I'd say these things qualify as some lousy health in a continuous nosedive.
Also, much of this week has been spent in the bathroom sick as a dog. In and out... try to sleep... in and out of the bathroom again... try to sleep... try to accomplish something and struggle until I end up sick in the bathroom again... in and out... try to sleep... squeeze in a meal or two here and there... in and out of the bathroom sick as a dog again... limping around the house because my legs won't do what my brain asks of them... over and over, ad nauseam. Oh yeah... add nausea into the mix... sometimes I'm famished, sometimes I experience terrible nausea.
My legs have become such a problem that I am thinking about looking for my cane again which is probably buried in a storage closet somewhere. Actually, most of my day is spent either sitting in the living room or sitting in the bathroom but getting to and from rooms in the house has been a little bit of an adventure with my legs not cooperating with my brain. I've been wondering if I'm going to get stuck in the bathroom or the back hallway because my legs completely stopped cooperating with my brain.
Many years ago, I learned to swing my legs by using momentum to get around whenever my legs get like this. I still have enough strength to be upright for short periods but getting my legs to move in a coordinated fashion is difficult. I found that swaying my body and swinging my legs keeps my body putting one foot in front of the other.
Through all these symptoms this past week, my pain is significantly worse as well... bone pain... joint pain... and just general malaise. It is enough pain to have been seeing stars during these times. Oddly enough, I often forget to mention all the pain to my doctors.
Also, getting up and down staircases is a significant obstacle I try to avoid and a reason why I left one of my homes... the only bathroom in that home was on the second floor. Contending with that staircase all day long and all night long was brutal. Sometimes I went up and down the stairs on my butt. Moving into a one story home was the answer. I think that if I had a bathroom on each floor, I'd be okay if I only had to use the stairs twice a day... once down in the morning... and once up at night to go to bed.
Needless to say, I've been rather sedentary this past week. I have found myself at my desk doing research, writing, editing photos I've shot, and even some drawing and painting.
It's been a brutal week but I've put together some artwork this week to show here in my blog... here are just three images for now...
For most prescriptions, people can just run to the local pharmacy to pick up a last minute prescription. I actually do this with any acute problems I am having. I bite the bullet (taking a serious hit in cost) and I buy the prescription locally so that I can start on the medication immediately.
Unfortunately, most of my medications are absurdly expensive and going to our local retail pharmacy is not financially possible for me. For instance, one of my medications, by itself, costs upwards of $40,000 annually. If I bought this medication locally rather than through my insurance plan's mail order program there would be two problems... 1. The cost would be triple that cost. And, 2. It is such an expensive drug that I would need to order it in advance anyway because no pharmacies keep it in stock. So, most of my medications (but not all) are ordered online through my insurance plan mail order pharmacy.
Mail order (I actually order it online but it is delivered by the USPS, UPS or FedEx) introduces a lag in this process. It can take one to three weeks after I request a refill before I have the medication in my hand. Needless to say, I try to stay on top of my 18 or so medications so I am always pre-ordering my prescriptions.
A week ago, one of my prescription bottles was empty... I ran to the cabinet (okay, to be honest, I slowly made my way to the cabinet but in my mind I was running) where I keep bottles of prescriptions... no bottle of this one was there. I instantly realized that I never did order this refill. This one prescription is handled completely differently than the rest...
Since this drug is not FDA-approved, I had to find a pharmacy that would compound this concoction into capsules. I deal with this particular pharmacy on the telephone only since there are no auto-refills online nor a website for this one. I must call. My insurance company is completely out of this one so the cost is all mine. First, I check my bank account and figure out how I will jockey money around so I can afford to place this order because I must pony up the money immediately when I call in the prescription refill. Needless to say, because of these reasons, I definitely remember each conversation I have with this pharmacy on the west coast because it is so out of the ordinary.
I screwed up and I didn't order this medication in time so now I am without this medication for a week at this point... and I won't see it for another week or two. This is exceptionally bad news for my health.
Whenever Systemic Mastocytosis causes a nosedive in health, it is life-threatening because the primary symptom of the myriad of symptoms is idiopathic anaphylaxis. There are other long term issues which are life-threatening as well but, to keep things simple, anaphylaxis is my immediate and primary concern.
Occasionally, I miss one of four daily doses of medications (a cocktail of medications which is different at different times of the day). When I miss just a single dose (for instance, if I was distracted by an event we are attending, or a party at someone's house, or if I just sleep through it), my health crashes into anaphylaxis within three or four hours after the missed dose. I mention this to explain how important all of my medications are to my daily survival. If missing just one dose causes life-threatening symptoms within a few hours, the medications are definitely needed. Actually, the crashing health is always what reminds me that I missed a dose of medications!
Now, I've gone a full week without one of my key medications... a combination of mast cell stabilizer and H1 blocker. Within a couple of days without this one medication, my health took a serious nosedive...
The cascade of poor health started with narrowing vision, leg weakness, dizziness and relatively mild difficulty breathing... all the early signs of impending anaphylaxis. I pounded some emergency medications including epinephrine (which is a whole other frustrating story) in an attempt to quickly stabilize my body.
I'm trying to add extra, but different, H1 blockers and a little bit extra of my $40,000/year mast cell stabilizer but it is not the same as using this drug I am now missing. My health is continuing on its continuous dive.
Breathing is an issue. Fatigue is always an issue but it is worse this week. I'm dizzy... weak... and many of the neurological symptoms I had before all my medications have helped stabilize my health have returned (such as great difficulty getting my legs to cooperate with my brain, weakness, tremors, vision issues and probably a few other neurological symptoms I am forgetting about right now). I'd say these things qualify as some lousy health in a continuous nosedive.
Also, much of this week has been spent in the bathroom sick as a dog. In and out... try to sleep... in and out of the bathroom again... try to sleep... try to accomplish something and struggle until I end up sick in the bathroom again... in and out... try to sleep... squeeze in a meal or two here and there... in and out of the bathroom sick as a dog again... limping around the house because my legs won't do what my brain asks of them... over and over, ad nauseam. Oh yeah... add nausea into the mix... sometimes I'm famished, sometimes I experience terrible nausea.
My legs have become such a problem that I am thinking about looking for my cane again which is probably buried in a storage closet somewhere. Actually, most of my day is spent either sitting in the living room or sitting in the bathroom but getting to and from rooms in the house has been a little bit of an adventure with my legs not cooperating with my brain. I've been wondering if I'm going to get stuck in the bathroom or the back hallway because my legs completely stopped cooperating with my brain.
Many years ago, I learned to swing my legs by using momentum to get around whenever my legs get like this. I still have enough strength to be upright for short periods but getting my legs to move in a coordinated fashion is difficult. I found that swaying my body and swinging my legs keeps my body putting one foot in front of the other.
Through all these symptoms this past week, my pain is significantly worse as well... bone pain... joint pain... and just general malaise. It is enough pain to have been seeing stars during these times. Oddly enough, I often forget to mention all the pain to my doctors.
Also, getting up and down staircases is a significant obstacle I try to avoid and a reason why I left one of my homes... the only bathroom in that home was on the second floor. Contending with that staircase all day long and all night long was brutal. Sometimes I went up and down the stairs on my butt. Moving into a one story home was the answer. I think that if I had a bathroom on each floor, I'd be okay if I only had to use the stairs twice a day... once down in the morning... and once up at night to go to bed.
Needless to say, I've been rather sedentary this past week. I have found myself at my desk doing research, writing, editing photos I've shot, and even some drawing and painting.
It's been a brutal week but I've put together some artwork this week to show here in my blog... here are just three images for now...
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| Sheila, during one of our kayaking excursions at the lake... |
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| I always seem to find one more loon photo to share. The funny thing is, I always seem to remember what was happening when I shot each of the photos! When I shot this one, I was paddling in my kayak... the kayak was rocking and I was having trouble staying focused on this loon because of the rocking and because I was so low to the water. Actually, when the kayak starts rocking a bit and you are that low in the water, it is incredibly difficult to just look through the viewfinder nevermind capture a clean, crisp shot. |
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| I spent a little time each day drawing and painting. This is the result of one of my ideas... |
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