I have to fess up.
Perhaps because this whole Systemic Masto. thing became a LOT more real to me this week, in the wake of a negative c-kit mutation in my bone marrow biopsy and then being told that this negative test does NOT mean I do not have this incurable and ever so frustrating disease. The news that we just sort of have to wait and see which of my vital organs starts shutting down first so that we can tell WHERE these funky mast cells are lurking, hit me pretty hard. Plus, having another very real and ugly reaction AT the hospital, and the fallout from that at the same time...it's been a bit sobering, to say the least.
This whole sense of limbo has shifted in some ways, and not in others.
I sort of mostly do as I'm told to, by these doctors.
Sort of.
Confession: in the four days before I went to St. Michael's hospital for the bmb test results I looked into my bottle of Cromolyn/Gastrocom, that costs $380.00 per month and thought 'is this stuff really making a difference?' and thought, 'we can't afford this' and thought, 'if this is all in my head and I'm just a hypochondriac then I don't really need this'. It doesn't take a genius to figure out that our drug plan, that caps us off at $5000.00 per calendar year is going to say 'no' to the prescriptions at some point in the next coming months. Gastrocom is only ONE of NINE medications that I take daily. So, I did, what some other masto patients do, and cut my four doses per day down to three, then two...and that's about as far as I can stretch it; make it last longer; cost less. There's a price to pay for this cutting though: I flush; have horrendous gut pain, puffy tongue, I itch, and flare up at the hint of an allergen. Turns out that I can't cut down this much at all. I guess Dr. Vadas is right about having to take it ON TIME, PROPERLY...or else, someone's perfume can set you right off.
My past 12 weeks of no hospitalization/emergency crew reactions had me thinking that I was actually immune to this shit. I was starting to believe I'm normal. I was starting to believe I'm ok. I was starting to believe that I don't really need to take all this medication; stay in my house/on my property; starting to believe that somehow, on some level, I just want to be a social dropout and that I'm somehow creating this little bit of 'sick' reality for myself. I was starting to believe that if I just WISH/THINK I'm ok, I will be.
Wrong.
I've mentioned that I'm not the only Masto patient that does this. However, the fallout from this not taking our medicine's properly stupidity is just that...stupidity. It's unecessary. And, it's foolhardy. There is a possibility that HAD I been taking my meds properly, I might not have had such a massive reaction to that woman's perfume. Having said this harshness, I am aware of the internal struggles that we have in coming to terms with this weird disease and its impact on our lives. So this juggling or roller coaster ride is pretty normal, despite being not very healthy or ok. The whole not knowing FOR SURE that you have Masto though and whether or not these drugs are actually helping you or not (for real???) is always present.
I've done this before. And you think I would've learned. Everytime I do this (forget my meds; get slack about the meds; think I don't REALLY need the meds; get into my pocket of medicinal denial and tell myself this is ALL in my head and I am nothing but a big loser for ending up where I am, healthwise, UGH...) I get into trouble. I have a HUGE reaction. I usually end up in hospital. This toll is a large price to pay for my own stupidity and denial. Not just for me, physically. There is my husband, children, family & friends to consider too. This messes with everyone's schedules, and welfare, emotions and concern for me and concern for my children and animals.
So, lots of thought about WHY I do this, has crossed over and over the gray and white matter that fills my skull in the past few recovery days...it's because I want this all to go away and not exist. And, I want to believe that I don't need these drugs. And I don't want to be dependent on medicines to keep me safe and alive and well. Especially Western/Allopathic medicines, that ALWAYS have some kind of side effect that'll catch up with you one day. And, because my diagnosis seems so defined one day and not the next...I don't know whether I'm coming, going, been or gone.
Dr. Vadas is right. KNOWING is better, than not knowing. We were all hoping the bmb would reveal something other than limbo. But here we are...swinging in and out of possibilities, and the fact that the 'markers' for Systemic Mastocystosis still have a long way to go. Hematology at St. Michael's Hospital seems to be under the opinion that the bmb just reveals SM's presence IN your bone marrow and blood, and only that. It can and could be lurking elsewhere. Ask Dawn, of Breaking of Dawn Blog...turns out that hers has been in her stomach this whole time. (You can link to to her story over there on the right...)
So, where is mine?
I had to use Epi spray twice again yesterday to stave off serious fallout from paint fumes at the parental's home (my fault, I shouldn't have gone down to see what Niall, my brotherlinlaw, was creating...) and from some other unknown while we were out grocery shopping. I obviously can't go into stores, despite my unwillingness to accept that I can no longer fulfill this vital family function in our home anymore. There are a few shops that are the exception, thankfully. Mostly wholistic, whole food and organic/natural shops. I'm not sure about what is an ok amount of Epi spray to be taking, as I can't find this info anywhere...so my GP/Family doctor is on this and trying to find out. He couldn't find it on his palm pilot either. I've had Epi spray almost every day for the past two weeks. This can't be good. And, it's a sign that some things need to shift. Taking emergency medicine daily isn't ok.
So, the confession is this: I didn't take my meds properly; I've been in denial AGAIN; I've been stupid AGAIN and there is a price to pay for this. And, it's not ok. So, it has to stop.
Perhaps because this whole Systemic Masto. thing became a LOT more real to me this week, in the wake of a negative c-kit mutation in my bone marrow biopsy and then being told that this negative test does NOT mean I do not have this incurable and ever so frustrating disease. The news that we just sort of have to wait and see which of my vital organs starts shutting down first so that we can tell WHERE these funky mast cells are lurking, hit me pretty hard. Plus, having another very real and ugly reaction AT the hospital, and the fallout from that at the same time...it's been a bit sobering, to say the least.
This whole sense of limbo has shifted in some ways, and not in others.
I sort of mostly do as I'm told to, by these doctors.
Sort of.
Confession: in the four days before I went to St. Michael's hospital for the bmb test results I looked into my bottle of Cromolyn/Gastrocom, that costs $380.00 per month and thought 'is this stuff really making a difference?' and thought, 'we can't afford this' and thought, 'if this is all in my head and I'm just a hypochondriac then I don't really need this'. It doesn't take a genius to figure out that our drug plan, that caps us off at $5000.00 per calendar year is going to say 'no' to the prescriptions at some point in the next coming months. Gastrocom is only ONE of NINE medications that I take daily. So, I did, what some other masto patients do, and cut my four doses per day down to three, then two...and that's about as far as I can stretch it; make it last longer; cost less. There's a price to pay for this cutting though: I flush; have horrendous gut pain, puffy tongue, I itch, and flare up at the hint of an allergen. Turns out that I can't cut down this much at all. I guess Dr. Vadas is right about having to take it ON TIME, PROPERLY...or else, someone's perfume can set you right off.
My past 12 weeks of no hospitalization/emergency crew reactions had me thinking that I was actually immune to this shit. I was starting to believe I'm normal. I was starting to believe I'm ok. I was starting to believe that I don't really need to take all this medication; stay in my house/on my property; starting to believe that somehow, on some level, I just want to be a social dropout and that I'm somehow creating this little bit of 'sick' reality for myself. I was starting to believe that if I just WISH/THINK I'm ok, I will be.
Wrong.
I've mentioned that I'm not the only Masto patient that does this. However, the fallout from this not taking our medicine's properly stupidity is just that...stupidity. It's unecessary. And, it's foolhardy. There is a possibility that HAD I been taking my meds properly, I might not have had such a massive reaction to that woman's perfume. Having said this harshness, I am aware of the internal struggles that we have in coming to terms with this weird disease and its impact on our lives. So this juggling or roller coaster ride is pretty normal, despite being not very healthy or ok. The whole not knowing FOR SURE that you have Masto though and whether or not these drugs are actually helping you or not (for real???) is always present.
I've done this before. And you think I would've learned. Everytime I do this (forget my meds; get slack about the meds; think I don't REALLY need the meds; get into my pocket of medicinal denial and tell myself this is ALL in my head and I am nothing but a big loser for ending up where I am, healthwise, UGH...) I get into trouble. I have a HUGE reaction. I usually end up in hospital. This toll is a large price to pay for my own stupidity and denial. Not just for me, physically. There is my husband, children, family & friends to consider too. This messes with everyone's schedules, and welfare, emotions and concern for me and concern for my children and animals.
So, lots of thought about WHY I do this, has crossed over and over the gray and white matter that fills my skull in the past few recovery days...it's because I want this all to go away and not exist. And, I want to believe that I don't need these drugs. And I don't want to be dependent on medicines to keep me safe and alive and well. Especially Western/Allopathic medicines, that ALWAYS have some kind of side effect that'll catch up with you one day. And, because my diagnosis seems so defined one day and not the next...I don't know whether I'm coming, going, been or gone.
Dr. Vadas is right. KNOWING is better, than not knowing. We were all hoping the bmb would reveal something other than limbo. But here we are...swinging in and out of possibilities, and the fact that the 'markers' for Systemic Mastocystosis still have a long way to go. Hematology at St. Michael's Hospital seems to be under the opinion that the bmb just reveals SM's presence IN your bone marrow and blood, and only that. It can and could be lurking elsewhere. Ask Dawn, of Breaking of Dawn Blog...turns out that hers has been in her stomach this whole time. (You can link to to her story over there on the right...)
So, where is mine?
I had to use Epi spray twice again yesterday to stave off serious fallout from paint fumes at the parental's home (my fault, I shouldn't have gone down to see what Niall, my brotherlinlaw, was creating...) and from some other unknown while we were out grocery shopping. I obviously can't go into stores, despite my unwillingness to accept that I can no longer fulfill this vital family function in our home anymore. There are a few shops that are the exception, thankfully. Mostly wholistic, whole food and organic/natural shops. I'm not sure about what is an ok amount of Epi spray to be taking, as I can't find this info anywhere...so my GP/Family doctor is on this and trying to find out. He couldn't find it on his palm pilot either. I've had Epi spray almost every day for the past two weeks. This can't be good. And, it's a sign that some things need to shift. Taking emergency medicine daily isn't ok.
So, the confession is this: I didn't take my meds properly; I've been in denial AGAIN; I've been stupid AGAIN and there is a price to pay for this. And, it's not ok. So, it has to stop.
3 comments:
Fiona, I'm so sorry for all you've been through the last few days (and years!).
You clearly have SM or IA/Mast Cell Activation Disorder. Does it really matter which one since the treatment is the same and there's no miracle cure for either. Thank goodness you have Dr. Vardas.
One thing for sure, it's not in your head!!!!!!!
Hope you get a breather fro awhile. You've been doing so well the last few months.
Sending warm loving hugs your way my friend. I'm sorry for the lack of information and the subsequent reaction.
Have you ever considered seeing Dr. Castells or Dr. Akin (who will be together in the same office next month). They are in Boston and are the dream team for masto & mast cell disorders. Let me know if you want their contact info.
Hi,
I'm so sorry to hear about what is going on with you. I understand your frustration throughout this process, just keep your head high and stay strong. I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network, and I'd like to invite you to learn more about it and apply to join at http://www.wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.
Best,
Hua
Post a Comment