Please read my friend Dawn's recent blog about Pain: http://thebreakoffdawn.blogspot.com/2010/03/unpleasant-feeling.html
It's a great look at Pain...and not just Masto pain. Dawn speaks about her courageous sister Lori, who battles Fybromyalgia. I have a special person in my life who has it too, and she's is filled with the same kind of strength, personal resolve and stubborness to not let 'it' win. So Dawn's post just about sums it up. Eloquently, succinctly and yet remains filled with hope. Hope and determination are two qualities that living with chronic illnesses solicit in us. Sure, there is a certain amount of personal wallowing and 'whoa is me' we have to wade through to get to Hope and Determination...but it's doable.
The strength that we manage to summon, when there are truly truly dark days when the pain is so bad that you just wanna curl and up and die, is blessing and a stark reminder that we ARE capable of the good fight even when we're down and out. However, the love and the joys/blessings that good family members and friends bring to our lives is part of an undeniable and much needed support system that helps us remember that in our fraility today, we CAN keep going...and that we are not alone in our fight. So, Lori, thank you for being there for Dawn. (in no particular order....) Mum, Dad, Auntie Pam and Uncle Pete, Mimi, Ant, Dorrie & Al, Simon, Nicole, Cousin Lauren, thanks for being there for me; Dawn thanks for being there for me; (in no particular order....) Julie, Celeste, Mark, Tom, Kevin, Allie, Emma, Cheryl, Carrie, Lesley, Leslie, Drea, Barb, Lori (I have my own special Lori), Tim, David, Sherry, Grant, Dan, Heather, Chrissy & Kadence, Jane, and that incredible group of Masto Sisters I've met on Facebook (sorry, it's 2 am...my brain is about to turn to mush....) THANK YOU.
I'd love to tell Masto, that naughty little boy, that he needs to go stand in the corner and leave the rest of us alone. However, the pain and insomnia are too strong tonight, so I'm awake on here and am reading biochemistry books in the hopes that I will konk out soon. Please read Dawn's post. It's a good one, and one I'm sure we can all identify with. Pain bites. Chronic Pain is...brutal.
Showing posts with label indolent Systemic Mastocytosis. Show all posts
Showing posts with label indolent Systemic Mastocytosis. Show all posts
Wednesday, March 17, 2010
Saturday, May 2, 2009
To Do...and Reflection on What was...
This week coming, I have a few things to do.
I need to get a hold of my first Immunologist, in Winnipeg, to see WHY her secretary can't pull the abnormal tryptase/24 hour urine elevated histamine test results that got the doctor talking about the possibility of Mastocytosis in the first place. I need to call Dr. Vadas and let him know what happened this past week. I need to call Dr. Stevens, my family GP, to book a followup to being in hospital appointment (have to be seen at the hospital in Ambulatory Care because I react in his medical office facility...they still have lots of latex and dust.) I can't even begin to think about the hysterectomy I'm supposed to be getting done.
Dr. Vadas says he just needs to see ONE, just 1, set of these abnormal test results because my body has been reporting 'normal' levels since. Despite all this 'shocking' stuff. I KNOW these results exist because when I went to see the first Hematologist/Oncologist, she was in receipt of them and told me that she didn't think we needed to bother with a bone marrow biopsy because my clinical history and these test results were as conclusive as she needed to diagnose indolent Systemic Mastocytosis. A positive bone marrow biopsy, in her opinion, wouldn't change ANYTHING...not how we manage this disease or how frequently I will continue to 'shock'. She suggested, at this point, that I return to the Immunologist and have further tests done to determine actual 'triggers' for me (some of which, we knew...as in, latex, bees/wasps and various foods.)
Which I did.
However, Dr. Hicks (Immunologist) didn't agree. So, she referred me to yet another Hematologist/Oncologist. Six months of further shocks, hospital visits, hospital stays and experiencing the boundaries of my world getting smaller and smaller with each reaction. She put me on the following to try and ease the frequency and severity of these reactions:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
Had the bone marrow biopsy done in October 2008. Abnormal test results were found in March 2008. First Hematolgist was seen in July 2008. Second Hematologist was teleconferenced and seen in Sept. 2008.
I stopped taking the aforementioned meds. after 4 months of use. I saw very little difference in terms of improvement in either frequence or severity of reactions. With the exception of Reactine...for the first time since I was about 17, my sinuses were no longer inflamed, stuffed or infected. I could breathe clearly through both nostrils.
My family doctor, after yet more anaphylactic reactions and a 3 day stay in hospital in November 2008, thought we should see an Immunologist closer to home, in our own province. So, I was referred to Dr. Fischer in Barrie. I received an appointement to see him April 2009. However, the week before Xmas 2008, I had two anaphylactic reactions back to back, a mere day or so apart...so I called Dr. Fischer's office to see if they could put me on a cancellation list. When I explained to the secretary what had been happening, she spoke to Dr. Fischer and I had an appointment to see him the following morning. So, three days before Xmas, I was in his office at 9:00 am.
He had all my notes from my family doctor (who had requested all records and test results from Dr. Hicks in Winnipeg - we were there 8 months during 2008) but the abnormal tryptase/histamine wasn't there. Odd. He put me on a regime of:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
10 - 50 mg of Doxepin (formerly used as an anti-depressant but they discovered it wasn't particularly good at this, and that it was fabulous as a Mast Cell stabilizer.) I was to start at 10 mg, see if it helped, and if not, proceed to 20 mg, and so on. I ended up on 50 mgs, taken before bed.
I saw Dr. Fischer two weeks later in mid January 2009. I had suffered two more anaphylactic reactions, despite avoiding all known triggers, and as per his advise, eating a low-histamine diet (no chocolate, alcohol, potatoes, tomatoes, shrimp, etc...) I was no longer going anywhere, except to my friend Lori's house on Friday night's for 'game night.' (Her and her husband had taken great pains to de-latex their home.) He thought we should send me to Dr. Vadas who studies Idiopathic Anaphyalxis at St. Michael's Hospital, in Toronto (Canada.) They would arrange for an appointment.
My husband and I saw Dr. Vadas on February 18th 2009. After a 3 hour intake, he ordered tryptase blood work (that came back normal "3") and told me to stay on the same regimen, minus the Doxepin. He said Dox was of little use. Unless I found it helpful with depression...which I didn't. He wanted to see me in six weeks, unless I had any reactions - in which case, I was to call the office and report to him. I had a big one four weeks later, despite being virtually housebound. I also had two knee surgeries during this time. I had another reaction the day before we went to see him for followup. He added 1 - 4 mg of Ketotifen to the regime. Start at 1mg, work up to 4mg. And wanted to see me two weeks later.
I suffered 3 more reactions before seeing him again mid April 2009. He added Gastrocom/Cromyln/Nalcrom, taken 4 times daily to the regime.
And here we are two weeks later...and I've had numerous flare ups, and 9, yes count 'em, NINE anaphylactic reactions since.
Where I AM seeing improvement (in a HUGE way) is in my day to day functioning. I'm no longer suffering with massive weakness (all over body weakness), the shakes, headaches, sinus pain and the relentless swings between constipation and diarhea....and I'm no longer flushing, getting tachycardia, all over itching, watery and itchy eyes and nose, vomitting, nausea, weird rashes/hives/bumps/spots that appear and then go down days or weeks later, blackouts, and a sense of panic several times a day. Nor am I exhausted when I wake up. Nor am I grumpy and in bone pain agony all day, every day. My tongue can, and does, look and feel 'normal' sometimes. I'm able to do more in my day, even if it's at home.
However, I'm still shocking. The follow up to this is bone pain, diarrhea, stomach pain, intermittent flushing/itching/rashing/hiving, puffy and sore tongue, vomitting, nausea, weakness, body vibrations/tingling and blackouts, tightness in the chest, pain in my right lung, and don't 'feel right.'
I've lost 9lb this past week. Not exactly how I want to lose weight, but it can't be helped. That stomach bleed and hiatus hernia seem to have done a doozy on my system. I've got lots of flub on me, so 9lb isn't a huge deal. And to be honest, it's nice to see the scale go down because I've been trying (eating and exercising regularly) to shift this weight but it's had no intentions of shifting. Until now.
And since it's 1:30 am, I'm guessing that my old friend insomnia has returned for a bit. Ugh.
This blog entry has been monopolized by this health crap. I have LOTs of other things to do in my life...have two gorgeous girls to play with and look after, garden to tend to, pigs and chickens to tend to (omg...I hope I'm not reacting to them!?!?!?), rooms to paint and junk to sort out and get rid of (purging!), so my life isn't entirely about this illness. Although, it takes a pretty massive front seat these days. I look forward to the day it doens't.
I need to get a hold of my first Immunologist, in Winnipeg, to see WHY her secretary can't pull the abnormal tryptase/24 hour urine elevated histamine test results that got the doctor talking about the possibility of Mastocytosis in the first place. I need to call Dr. Vadas and let him know what happened this past week. I need to call Dr. Stevens, my family GP, to book a followup to being in hospital appointment (have to be seen at the hospital in Ambulatory Care because I react in his medical office facility...they still have lots of latex and dust.) I can't even begin to think about the hysterectomy I'm supposed to be getting done.
Dr. Vadas says he just needs to see ONE, just 1, set of these abnormal test results because my body has been reporting 'normal' levels since. Despite all this 'shocking' stuff. I KNOW these results exist because when I went to see the first Hematologist/Oncologist, she was in receipt of them and told me that she didn't think we needed to bother with a bone marrow biopsy because my clinical history and these test results were as conclusive as she needed to diagnose indolent Systemic Mastocytosis. A positive bone marrow biopsy, in her opinion, wouldn't change ANYTHING...not how we manage this disease or how frequently I will continue to 'shock'. She suggested, at this point, that I return to the Immunologist and have further tests done to determine actual 'triggers' for me (some of which, we knew...as in, latex, bees/wasps and various foods.)
Which I did.
However, Dr. Hicks (Immunologist) didn't agree. So, she referred me to yet another Hematologist/Oncologist. Six months of further shocks, hospital visits, hospital stays and experiencing the boundaries of my world getting smaller and smaller with each reaction. She put me on the following to try and ease the frequency and severity of these reactions:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
Had the bone marrow biopsy done in October 2008. Abnormal test results were found in March 2008. First Hematolgist was seen in July 2008. Second Hematologist was teleconferenced and seen in Sept. 2008.
I stopped taking the aforementioned meds. after 4 months of use. I saw very little difference in terms of improvement in either frequence or severity of reactions. With the exception of Reactine...for the first time since I was about 17, my sinuses were no longer inflamed, stuffed or infected. I could breathe clearly through both nostrils.
My family doctor, after yet more anaphylactic reactions and a 3 day stay in hospital in November 2008, thought we should see an Immunologist closer to home, in our own province. So, I was referred to Dr. Fischer in Barrie. I received an appointement to see him April 2009. However, the week before Xmas 2008, I had two anaphylactic reactions back to back, a mere day or so apart...so I called Dr. Fischer's office to see if they could put me on a cancellation list. When I explained to the secretary what had been happening, she spoke to Dr. Fischer and I had an appointment to see him the following morning. So, three days before Xmas, I was in his office at 9:00 am.
He had all my notes from my family doctor (who had requested all records and test results from Dr. Hicks in Winnipeg - we were there 8 months during 2008) but the abnormal tryptase/histamine wasn't there. Odd. He put me on a regime of:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
10 - 50 mg of Doxepin (formerly used as an anti-depressant but they discovered it wasn't particularly good at this, and that it was fabulous as a Mast Cell stabilizer.) I was to start at 10 mg, see if it helped, and if not, proceed to 20 mg, and so on. I ended up on 50 mgs, taken before bed.
I saw Dr. Fischer two weeks later in mid January 2009. I had suffered two more anaphylactic reactions, despite avoiding all known triggers, and as per his advise, eating a low-histamine diet (no chocolate, alcohol, potatoes, tomatoes, shrimp, etc...) I was no longer going anywhere, except to my friend Lori's house on Friday night's for 'game night.' (Her and her husband had taken great pains to de-latex their home.) He thought we should send me to Dr. Vadas who studies Idiopathic Anaphyalxis at St. Michael's Hospital, in Toronto (Canada.) They would arrange for an appointment.
My husband and I saw Dr. Vadas on February 18th 2009. After a 3 hour intake, he ordered tryptase blood work (that came back normal "3") and told me to stay on the same regimen, minus the Doxepin. He said Dox was of little use. Unless I found it helpful with depression...which I didn't. He wanted to see me in six weeks, unless I had any reactions - in which case, I was to call the office and report to him. I had a big one four weeks later, despite being virtually housebound. I also had two knee surgeries during this time. I had another reaction the day before we went to see him for followup. He added 1 - 4 mg of Ketotifen to the regime. Start at 1mg, work up to 4mg. And wanted to see me two weeks later.
I suffered 3 more reactions before seeing him again mid April 2009. He added Gastrocom/Cromyln/Nalcrom, taken 4 times daily to the regime.
And here we are two weeks later...and I've had numerous flare ups, and 9, yes count 'em, NINE anaphylactic reactions since.
Where I AM seeing improvement (in a HUGE way) is in my day to day functioning. I'm no longer suffering with massive weakness (all over body weakness), the shakes, headaches, sinus pain and the relentless swings between constipation and diarhea....and I'm no longer flushing, getting tachycardia, all over itching, watery and itchy eyes and nose, vomitting, nausea, weird rashes/hives/bumps/spots that appear and then go down days or weeks later, blackouts, and a sense of panic several times a day. Nor am I exhausted when I wake up. Nor am I grumpy and in bone pain agony all day, every day. My tongue can, and does, look and feel 'normal' sometimes. I'm able to do more in my day, even if it's at home.
However, I'm still shocking. The follow up to this is bone pain, diarrhea, stomach pain, intermittent flushing/itching/rashing/hiving, puffy and sore tongue, vomitting, nausea, weakness, body vibrations/tingling and blackouts, tightness in the chest, pain in my right lung, and don't 'feel right.'
I've lost 9lb this past week. Not exactly how I want to lose weight, but it can't be helped. That stomach bleed and hiatus hernia seem to have done a doozy on my system. I've got lots of flub on me, so 9lb isn't a huge deal. And to be honest, it's nice to see the scale go down because I've been trying (eating and exercising regularly) to shift this weight but it's had no intentions of shifting. Until now.
And since it's 1:30 am, I'm guessing that my old friend insomnia has returned for a bit. Ugh.
This blog entry has been monopolized by this health crap. I have LOTs of other things to do in my life...have two gorgeous girls to play with and look after, garden to tend to, pigs and chickens to tend to (omg...I hope I'm not reacting to them!?!?!?), rooms to paint and junk to sort out and get rid of (purging!), so my life isn't entirely about this illness. Although, it takes a pretty massive front seat these days. I look forward to the day it doens't.
Thursday, April 30, 2009
Hell on Earth, or at least Parry Sound
I'm home from the hospital, where I've been since Sunday. Technically, I went in Sat. night, but they sent me home Sunday mid-morning, to return a scant 5 hours later in full anaphylaxis again. Only this time, I managed to get a stomach bleed with it and now have an hiatus hernia from all the wretching/gagging/coughing/puking. Since Friday night, I have suffered 9 full anaphylactic reactions. I blacked out with the reaction on Friday night so after the epi, went to bed instead of calling 911.
Lucky me, I got to take TWO ambulance rides this past weekend. And they had to shoot me up with additional epinephrine on route.
I think I spent most of Monday curled up in a ball in my hospital bed, tears involuntarily streaming down my face, soaking my blue hospital gown. They gave me morphine, benadryl, gravol, pantoloc, some other stronger steroids and ranitidine via IV. The pain ebbed. My self-beratement lingered.
At our local hospital, they have a doctor on weekly rotation who handles ALL the floor patients. This week, it was my lucky week. I had a doctor who refused to return Dr. Vadas' phone calls to the hospital because he didn't "really feel speaking to him will shed any light on the situation, we have it under control" and "I have 30 other patients on this floor, I don't really have time for this call." He'd never heard of SM or Systemic Mastocytosis, nor did he think it real. He wasn't interested in learning about it either. Nor did he think we needed to follow the post reaction protocol of Benadryl every 3-6 hours; prednisone and double up on reactine (super simple and effective things to take and do.) He didn't think it possible that I could be having an allergic reaction THIS continous. He thought I MUST have an ulcer or some kind of gastric otherness going on. Nor did they think I needed to take Ketotifen and Gastrocom/Cromylyn (because they didn't have it in the hospital and had never heard of it.) Ergo...I rebounded...and continued to. Nurses were at a loss as to 'what' was setting me off; and this doctor busied himself with prepping me for a gastrectomy and/or an endoscope. Thank GOD the surgeon who was to do these procedures said he wouldn't do them on someone in anaphylaxis rebound and thought I'd been through quite enough.
So then this doctor decided to do a barium xray. They came to get me as I was coming out of another anaphylactic reaction (nurses shot me up with benadryl and epi), and I was wheeled down to xray puking my guts up. Ummm, the joys of 'allergic foam' and bile.
Add to this that because I'd been admitted to their hospital in the past 6 months and admitted to another Canadian hospital in the past year, I had my nose, mouth & rectum swabbed and was in "isolation/quarantine" until the tests showed I had neither SARS nor Swine flu. So, EVERYONE had to gown up (something I lovingly came to call as "the yellow gown of shame"), mask up, glove up before they came into my room, and I was taken down to xray, in the same gear, trying to throw up through a mask that I wasn't permitted to remove.
Needless to say, when we arrived in xray, I had a total meltdown.
The Radiologist took me seriously. And, refused to shove barium down me until we cleared it with Dr. Vadas. It took about 20 mins, but Dr. Vadas spoke to this doctor and told him that he'd like the barium xray done BUT they must have someone standing by with epi. So, it took another 20 mins for them to find my nurse, (an unbelievably gorgeous young man named Nelson - "Hi Fiona, I'm your nurse" [gahhhhhhhhhhhhh, WHY do I get the gorgeous man-nurse when I've been pushed through several bushes backwards, have no pants on, haven't bathed for two days, am about to drink some barium crap that will then cake to my lips making me look like Al Jolsen ready to sing "Mammy" and am swollen up bigger than big because of the monster steroids they fed me the day before!?!?!?!?]- who arrived with epi.) The xray with barium was fine. Good job I do yoga though...some of the twists and positions I had to get into would be difficult for some folks. It showed an hiatus hernia as the source of the stomach bleed, this newly acquired pain in my chest/back, unbelievable gut pain and burning (acid reflux is unbelievably painful in this manner), as well as the continued vomitting. Interestingly, the lower and mid gut pain totally subsided whenever they shot me up with benadryl (leading me to conclude that this pain was allergic inflammation pain) and came back with a vengeance as soon as the benadryl wore off.
The arrogant doctor came in yesterday morning and told me that I'd be released because they didn't really know what else to do for me (the kitchen had no idea what to feed me either.) The stomach bleed was under control and wasn't caused by an ulcer but rather from this hernia I've acquired, and it looks like I must be suffering with a serious allergic reaction.
No kidding...
So, he advised me to go home and follow the protocol that my specialist had me follow and to come back in if I couldn't breathe or had further serious anaphylaxis. He called in a prescription for pantaloc to help with the hiatus hernia and the reflux I'm suffering because of it, and percoset for the pain. Told me to take it easy eating and drinking. I hadn't eaten since Sat. morning. Been on IV the whole time. Couldn't keep water or ginger ale down, or pills...so why eat?
Add to all of this too, that I got my period during the first night of my admission to the facility. Seems like I get the bulk of my reactions during or right before my period. Dr. Vadas says there seems to be some sort of link between flare ups and our hormones.
I was so glad to get the hell out of there because I can take better care of myself.
And, my epi spray arrived today from the USA. Dr. Vadas wants me to have this but be careful about using it. He thinks we need to cut the response time down as much as possible.
So, I'm exhausted, home and happy to be alive.
I hope I never have another 9 anaphylactic reactions in a 5 day period EVER again.
Lucky me, I got to take TWO ambulance rides this past weekend. And they had to shoot me up with additional epinephrine on route.
I think I spent most of Monday curled up in a ball in my hospital bed, tears involuntarily streaming down my face, soaking my blue hospital gown. They gave me morphine, benadryl, gravol, pantoloc, some other stronger steroids and ranitidine via IV. The pain ebbed. My self-beratement lingered.
At our local hospital, they have a doctor on weekly rotation who handles ALL the floor patients. This week, it was my lucky week. I had a doctor who refused to return Dr. Vadas' phone calls to the hospital because he didn't "really feel speaking to him will shed any light on the situation, we have it under control" and "I have 30 other patients on this floor, I don't really have time for this call." He'd never heard of SM or Systemic Mastocytosis, nor did he think it real. He wasn't interested in learning about it either. Nor did he think we needed to follow the post reaction protocol of Benadryl every 3-6 hours; prednisone and double up on reactine (super simple and effective things to take and do.) He didn't think it possible that I could be having an allergic reaction THIS continous. He thought I MUST have an ulcer or some kind of gastric otherness going on. Nor did they think I needed to take Ketotifen and Gastrocom/Cromylyn (because they didn't have it in the hospital and had never heard of it.) Ergo...I rebounded...and continued to. Nurses were at a loss as to 'what' was setting me off; and this doctor busied himself with prepping me for a gastrectomy and/or an endoscope. Thank GOD the surgeon who was to do these procedures said he wouldn't do them on someone in anaphylaxis rebound and thought I'd been through quite enough.
So then this doctor decided to do a barium xray. They came to get me as I was coming out of another anaphylactic reaction (nurses shot me up with benadryl and epi), and I was wheeled down to xray puking my guts up. Ummm, the joys of 'allergic foam' and bile.
Add to this that because I'd been admitted to their hospital in the past 6 months and admitted to another Canadian hospital in the past year, I had my nose, mouth & rectum swabbed and was in "isolation/quarantine" until the tests showed I had neither SARS nor Swine flu. So, EVERYONE had to gown up (something I lovingly came to call as "the yellow gown of shame"), mask up, glove up before they came into my room, and I was taken down to xray, in the same gear, trying to throw up through a mask that I wasn't permitted to remove.
Needless to say, when we arrived in xray, I had a total meltdown.
The Radiologist took me seriously. And, refused to shove barium down me until we cleared it with Dr. Vadas. It took about 20 mins, but Dr. Vadas spoke to this doctor and told him that he'd like the barium xray done BUT they must have someone standing by with epi. So, it took another 20 mins for them to find my nurse, (an unbelievably gorgeous young man named Nelson - "Hi Fiona, I'm your nurse" [gahhhhhhhhhhhhh, WHY do I get the gorgeous man-nurse when I've been pushed through several bushes backwards, have no pants on, haven't bathed for two days, am about to drink some barium crap that will then cake to my lips making me look like Al Jolsen ready to sing "Mammy" and am swollen up bigger than big because of the monster steroids they fed me the day before!?!?!?!?]- who arrived with epi.) The xray with barium was fine. Good job I do yoga though...some of the twists and positions I had to get into would be difficult for some folks. It showed an hiatus hernia as the source of the stomach bleed, this newly acquired pain in my chest/back, unbelievable gut pain and burning (acid reflux is unbelievably painful in this manner), as well as the continued vomitting. Interestingly, the lower and mid gut pain totally subsided whenever they shot me up with benadryl (leading me to conclude that this pain was allergic inflammation pain) and came back with a vengeance as soon as the benadryl wore off.
The arrogant doctor came in yesterday morning and told me that I'd be released because they didn't really know what else to do for me (the kitchen had no idea what to feed me either.) The stomach bleed was under control and wasn't caused by an ulcer but rather from this hernia I've acquired, and it looks like I must be suffering with a serious allergic reaction.
No kidding...
So, he advised me to go home and follow the protocol that my specialist had me follow and to come back in if I couldn't breathe or had further serious anaphylaxis. He called in a prescription for pantaloc to help with the hiatus hernia and the reflux I'm suffering because of it, and percoset for the pain. Told me to take it easy eating and drinking. I hadn't eaten since Sat. morning. Been on IV the whole time. Couldn't keep water or ginger ale down, or pills...so why eat?
Add to all of this too, that I got my period during the first night of my admission to the facility. Seems like I get the bulk of my reactions during or right before my period. Dr. Vadas says there seems to be some sort of link between flare ups and our hormones.
I was so glad to get the hell out of there because I can take better care of myself.
And, my epi spray arrived today from the USA. Dr. Vadas wants me to have this but be careful about using it. He thinks we need to cut the response time down as much as possible.
So, I'm exhausted, home and happy to be alive.
I hope I never have another 9 anaphylactic reactions in a 5 day period EVER again.
Monday, March 30, 2009
Digestive Hell
The past 4 or 5 days have been hellish, internally. The swings between constipation and diahrrea seem nothing short of absurd. The pain...ohhhhhh, the pain. Sort of feels like someone has poured acid into your gut or you have one of those super huge farts that swirl around and can't come out...I've been bloated; I've poo'd; I've farted; I've burped; I've belched and every other unladylike thing that the gut can throw a person's way.
The meds I'm on aren't helping this. Or maybe they are, and it's relative...I'm experiencing what I'm experiencing and that's on top of the meds? I dunno. I DO know that dairy and meat are not my friends right now. I can have these things sometimes, and then...I can't. I never know until I have them, how I'm going to fair. And, until the past few days...I could deal with the discomfort. However, pain has reached new heights for me...and curled up on the futon downstairs so that I don't disturb anyone else in my house, with a hot beanbag, heatpad and hoping that someone will shoot me ISN'T ok.
So, over the weekend, during this hell, I put my thinking cap on. Not easy with the brain fog I so often have to deal with. Nothing like being a total moron when you've spent a good chunk of your life being functional. I know my sister, Jennifer, when her cancer was in her gut would stick to a macrobiotic diet. So, I'm going to take my cue from my dearly loved deceased sister.
Day 1 (today)
Breakfast
Oatmeal (steel cut oats...not instant or quick cook), organic of course. Mixed with mostly water and a wee bit (like less than a 1/4 cup) lactose free, organic, milk. A drizzle of Maple Syrup (that we made ourselves!) Organic raisins. Organic Hemp seed sprinkled on top, after cooking (don't cook or heat hemp!) A cup of green tea (the real, loose leaf stuff...in my cool teapot with the built in tea strainer.) A cup of water. Supplements.
Post breakfast...no urge to run to the loo and no need to light three sticks of incense.
Almost lunchtime...ditto. Pee'd twice without incident. Well, except for being bright yellow from the supplements. Weeeeeeeeee hOOOOOO!!!!!!!!!!
Lunch
Miso soup, with teaspoon of garlic (diced, raw), wakame seaweed, soft tofu...cubed.
1/4 cup brown rice, with soy sauce
1 slice left over quiche (that I made...this one was vegan...no cheese, but with zucchini, parsley, sundried tomatoes, garlic, spring onions and cilantro...YUMMERS!)
salad - which was really butterleaf lettuce and a couple springs of raw, organic, brocolli.
Green tea.
A cup of water.
So far...so good.
This is my first day of non-vomitting. No diahrrea or constipation cramps so far. AND...the pain is starting to subside. I had acid reflux yesterday all afternoon and I NEVER get that.
Will be switching over to vanilla soy milk when my husband gets home from work.
I feel completely fragile. My world has just gotten infinately more smaller, yet again. And it wasn't very big to begin with. So, I'm going to breathe in, try to enjoy what I can. And, ignore those cheesecakes in the fridge. Think I'll put them in the freezer for a rainy day. Someone else's rainy day, that is. Guests?
Thank the Lord for small mercies...like my not being a caffinated person any longer. I gave that habit up about a year ago and am better for it, overall. Withdrawal was a bitch though. However, I AM glad that I no longer NEED a cup of coffee or tea to get me through anything or going. I wake up ready to roll....assuming that I've slept.
I feel like my period is about to start, and for many Masto folks (well, women folk) this is a time of month when we find ourselves reacting in a huge way. I know 9 times out of 10, I am in hospital when I have my period. I know this because I fret about it...smells and going too long without going to the loo. One of the complications of being a woman with this disease and these reactions. So, I'm wondering if this is compounding the digestive sensitivity?
This all continues to be a bit elusive and a big mystery in a lot of ways. We desperately need funding for research for this incurable disease. There HAS to be a solution...or some common thread that ties all us Masto folks together? This can't just be an 'orphan' disease...
The meds I'm on aren't helping this. Or maybe they are, and it's relative...I'm experiencing what I'm experiencing and that's on top of the meds? I dunno. I DO know that dairy and meat are not my friends right now. I can have these things sometimes, and then...I can't. I never know until I have them, how I'm going to fair. And, until the past few days...I could deal with the discomfort. However, pain has reached new heights for me...and curled up on the futon downstairs so that I don't disturb anyone else in my house, with a hot beanbag, heatpad and hoping that someone will shoot me ISN'T ok.
So, over the weekend, during this hell, I put my thinking cap on. Not easy with the brain fog I so often have to deal with. Nothing like being a total moron when you've spent a good chunk of your life being functional. I know my sister, Jennifer, when her cancer was in her gut would stick to a macrobiotic diet. So, I'm going to take my cue from my dearly loved deceased sister.
Day 1 (today)
Breakfast
Oatmeal (steel cut oats...not instant or quick cook), organic of course. Mixed with mostly water and a wee bit (like less than a 1/4 cup) lactose free, organic, milk. A drizzle of Maple Syrup (that we made ourselves!) Organic raisins. Organic Hemp seed sprinkled on top, after cooking (don't cook or heat hemp!) A cup of green tea (the real, loose leaf stuff...in my cool teapot with the built in tea strainer.) A cup of water. Supplements.
Post breakfast...no urge to run to the loo and no need to light three sticks of incense.
Almost lunchtime...ditto. Pee'd twice without incident. Well, except for being bright yellow from the supplements. Weeeeeeeeee hOOOOOO!!!!!!!!!!
Lunch
Miso soup, with teaspoon of garlic (diced, raw), wakame seaweed, soft tofu...cubed.
1/4 cup brown rice, with soy sauce
1 slice left over quiche (that I made...this one was vegan...no cheese, but with zucchini, parsley, sundried tomatoes, garlic, spring onions and cilantro...YUMMERS!)
salad - which was really butterleaf lettuce and a couple springs of raw, organic, brocolli.
Green tea.
A cup of water.
So far...so good.
This is my first day of non-vomitting. No diahrrea or constipation cramps so far. AND...the pain is starting to subside. I had acid reflux yesterday all afternoon and I NEVER get that.
Will be switching over to vanilla soy milk when my husband gets home from work.
I feel completely fragile. My world has just gotten infinately more smaller, yet again. And it wasn't very big to begin with. So, I'm going to breathe in, try to enjoy what I can. And, ignore those cheesecakes in the fridge. Think I'll put them in the freezer for a rainy day. Someone else's rainy day, that is. Guests?
Thank the Lord for small mercies...like my not being a caffinated person any longer. I gave that habit up about a year ago and am better for it, overall. Withdrawal was a bitch though. However, I AM glad that I no longer NEED a cup of coffee or tea to get me through anything or going. I wake up ready to roll....assuming that I've slept.
I feel like my period is about to start, and for many Masto folks (well, women folk) this is a time of month when we find ourselves reacting in a huge way. I know 9 times out of 10, I am in hospital when I have my period. I know this because I fret about it...smells and going too long without going to the loo. One of the complications of being a woman with this disease and these reactions. So, I'm wondering if this is compounding the digestive sensitivity?
This all continues to be a bit elusive and a big mystery in a lot of ways. We desperately need funding for research for this incurable disease. There HAS to be a solution...or some common thread that ties all us Masto folks together? This can't just be an 'orphan' disease...
Monday, March 23, 2009
Hallelujah
First, with the gorgeousity of spring piercing the morning sky, I find my heart filled with music. So, I'd like to share some with you today.
hallelujah/http://www.metacafe.com/watch/153563/hallelujah/
While this rendition is by four Norweigen gentlemen (whose names I don't yet know...but they have gorgeous voices), I am a die-hard Leonard Cohen fan. This song, in its various incarnations, speaks to me.
Masto-wise, it's been a quiet weekend. I had a glass of wine on Saturday night, that threw me headlong into vomiting and an all day hang-over. Note to Self: wine isn't worth it. Despite my loving the taste and missing the kinesthetic pleasures of it. So I'm quite tired today. My stomach has yet to recover.
Knee surgery-wise: the knee is healing but is feeling quite weak today. Perhaps going without a cane yesterday was too much for it? Not enough rest? I dunno. The weather (sun peaking through the cold March morning) makes me wanna be outside in my garden but my legs have other ideas. So, it's back to bed for a wee spell this morning for me. I'm exhausted. And the day has just begun.
Peace with be you.
hallelujah/http://www.metacafe.com/watch/153563/hallelujah/
While this rendition is by four Norweigen gentlemen (whose names I don't yet know...but they have gorgeous voices), I am a die-hard Leonard Cohen fan. This song, in its various incarnations, speaks to me.
Masto-wise, it's been a quiet weekend. I had a glass of wine on Saturday night, that threw me headlong into vomiting and an all day hang-over. Note to Self: wine isn't worth it. Despite my loving the taste and missing the kinesthetic pleasures of it. So I'm quite tired today. My stomach has yet to recover.
Knee surgery-wise: the knee is healing but is feeling quite weak today. Perhaps going without a cane yesterday was too much for it? Not enough rest? I dunno. The weather (sun peaking through the cold March morning) makes me wanna be outside in my garden but my legs have other ideas. So, it's back to bed for a wee spell this morning for me. I'm exhausted. And the day has just begun.
Peace with be you.
Friday, March 20, 2009
Good Day
Ahhhhhhhhh, if ONLY I could wake up feeling as good as I did today, every day. Mind you, would I appreciate that I'm having a good day if I were to have them every day? Don't fall off your chair, I also put on a skirt today.
I had big plans to enjoy this day of presence, energy, vitality and vigor! However, my girls wanted to lay low, and get themselves together for their various 'dates' today. One friend was taking my oldest daughter swimming with her niece and nephew; another friend was taking my youngest daughter swimming and rock climbing with her two sons. I can't begin to express my gratitude for these friends taking my children to places that will throw me into anaphylaxis just by walking in. It's unlikely that I will ever be able to swim in a public pool ever again in this lifetime. My chemical sensitivities combined with latex allergy, and mast cells that don't seem to want to behave, sort of make me an anaphylactic time bomb. Public pools aren't the be all to end all either...especially when you live in God's country...which is where we live. Surrounded by lakes, rivers and the Great Lakes, I don't really have any reason to bemoan my public pool fate. Seasonally, I can swim all summer. And, in light of my intolerance to heat, it'll be just as well that cool waters are my friend.
By 1pm today, I was childless.
I had big plans then, to finish this essay for this distance education course I've been doing this term. It's the final paper. It was due on Tuesday. However, I'm doing so well in the course that my prof. says I don't need to worry about handing anything in on time AND I ended up being able to pick an essay of my own choosing because I'd clearly demonstrated an understanding beyond the objectives of the course itself. This is the first time in my academic career this kind of thing has happened. I'm not quite sure how it happened, actually. But it did. I have an A+/100% so far in the class - apparently the only student to be doing this well in this class - and the prof. is looking to see if we can get my essays published in some scholarly journals. I didn't think they were that good, but she does. So this last essay, despite having no real stress, deadlines or content pressure, IS weighing heavily on me. It's amazing I even got ANY essays written these past few months with the kind of brain fog that often sits in my skull. This last essay only needs to be 5-8 pages. But, I've got 20 so far. I've been given free reign to write as much as I want. It was fun, but right now I just want to finish it and be done. Probably because I can smell Spring outside and have gardens and critters I want to start prepping for. There is a small part of me that doesn't want to finish the paper either because to finish it, means to finish the course...and I've enjoyed it. It wasn't at all what I thought it would be when I signed up for it...and that has been a real blessing. It's a class in Program Planning for Adults.
Maybe I can use some of what I've learned to get this Metaphysical Book Club up and running, or something? Barb and I have been chatting about this book club for some time now.
Anyway, I'm still procrastinating this essay. I should take advantage of my brain when it's clear and write. There's a chunk of me that thinks 'why bother?' about writing about education theory; and that that little inner critic (that we all have) that tells me that my thoughts aren't worth the paper they're written on, so 'why bother???' Well..I keep telling this little critic to get lost because, the little critic isn't all that helpful to me, or anyone else. Tonight is no different.
I obviously didn't get much written today while I was childless. I fell into a deep, gorgeous, uninterrupted slumber. And here I am now, just after midnight, still childless...and I'm blogging instead of essaying. And rambling.
I should embrace a painless, foggless, achless, itchless, pukeless, diahrrealess, anaphylaxisless, sleepless, badmoodless and mastoless day...instead of lamenting all the things I could've accomplished and didn't. It'd be lovely to wake up tomorrow feeling as good as I did today. But with Masto...you never know. So, I'd better get on and finish this essay while I can.
I had big plans to enjoy this day of presence, energy, vitality and vigor! However, my girls wanted to lay low, and get themselves together for their various 'dates' today. One friend was taking my oldest daughter swimming with her niece and nephew; another friend was taking my youngest daughter swimming and rock climbing with her two sons. I can't begin to express my gratitude for these friends taking my children to places that will throw me into anaphylaxis just by walking in. It's unlikely that I will ever be able to swim in a public pool ever again in this lifetime. My chemical sensitivities combined with latex allergy, and mast cells that don't seem to want to behave, sort of make me an anaphylactic time bomb. Public pools aren't the be all to end all either...especially when you live in God's country...which is where we live. Surrounded by lakes, rivers and the Great Lakes, I don't really have any reason to bemoan my public pool fate. Seasonally, I can swim all summer. And, in light of my intolerance to heat, it'll be just as well that cool waters are my friend.
By 1pm today, I was childless.
I had big plans then, to finish this essay for this distance education course I've been doing this term. It's the final paper. It was due on Tuesday. However, I'm doing so well in the course that my prof. says I don't need to worry about handing anything in on time AND I ended up being able to pick an essay of my own choosing because I'd clearly demonstrated an understanding beyond the objectives of the course itself. This is the first time in my academic career this kind of thing has happened. I'm not quite sure how it happened, actually. But it did. I have an A+/100% so far in the class - apparently the only student to be doing this well in this class - and the prof. is looking to see if we can get my essays published in some scholarly journals. I didn't think they were that good, but she does. So this last essay, despite having no real stress, deadlines or content pressure, IS weighing heavily on me. It's amazing I even got ANY essays written these past few months with the kind of brain fog that often sits in my skull. This last essay only needs to be 5-8 pages. But, I've got 20 so far. I've been given free reign to write as much as I want. It was fun, but right now I just want to finish it and be done. Probably because I can smell Spring outside and have gardens and critters I want to start prepping for. There is a small part of me that doesn't want to finish the paper either because to finish it, means to finish the course...and I've enjoyed it. It wasn't at all what I thought it would be when I signed up for it...and that has been a real blessing. It's a class in Program Planning for Adults.
Maybe I can use some of what I've learned to get this Metaphysical Book Club up and running, or something? Barb and I have been chatting about this book club for some time now.
Anyway, I'm still procrastinating this essay. I should take advantage of my brain when it's clear and write. There's a chunk of me that thinks 'why bother?' about writing about education theory; and that that little inner critic (that we all have) that tells me that my thoughts aren't worth the paper they're written on, so 'why bother???' Well..I keep telling this little critic to get lost because, the little critic isn't all that helpful to me, or anyone else. Tonight is no different.
I obviously didn't get much written today while I was childless. I fell into a deep, gorgeous, uninterrupted slumber. And here I am now, just after midnight, still childless...and I'm blogging instead of essaying. And rambling.
I should embrace a painless, foggless, achless, itchless, pukeless, diahrrealess, anaphylaxisless, sleepless, badmoodless and mastoless day...instead of lamenting all the things I could've accomplished and didn't. It'd be lovely to wake up tomorrow feeling as good as I did today. But with Masto...you never know. So, I'd better get on and finish this essay while I can.
Friday, March 13, 2009
That'll Teach Me...
The sun pounding through the car window was obviously too much heat for my mast-cell sensitive body. So, on route to see my Orthopedic Surgeon I started flushing, itching and feeling sick to my stomach. Got a pounding headache. Tachycardia (rapid heart beat), followed by bradychardia (slow beats) and back again. And, I was like this for a couple of hours. But, I could breathe. And, my lungs didn't hurt. I consider this, no lung & breathing pain, a huge success.
Within a minute of being in Ambulatory Care with my Ortho. Surgeon, I began reacting. When I found it difficult to swallow, I coughed, spluttered and gagged. It wouldn't stop, and then I just couldn't swallow. Totally frightening. Dr. Smythe (Ortho) called nurses for help and to geta wheelchair. A nurse came in, took one look at me and said we didn't have time to get a wheelchair, so they both grabbed me, held me firm and we scooted over to Emerg. just around the corner. However, I lost consciousness and did a face plant in the emerg. hallway. Got that weird all over body tingling sensation, felt by entire body become rag doll-like, and I woke up on the ground face down. Head hurt, and the knee I've just had surgery on in the past few weeks was killing me.
Then I puked and puked the white foamy crap that comes flying out of my body.
The benadryl injection & Epi they gave me in the arms totally did the trick. It all died down.
There's a nurse there, who's always snarky with me. I don't know if this is her attempts at humour or what, but she is brutal. When I was stable, she came in to put my wrist band on and said quietly to me, "that was quite the stunt you pulled out there, eh?" I opted to not react to her. I don't have to justify myself to this woman.
I found myself having a huge emotional reaction to all of this. I started thinking things like, "that'll teach you to go yelling to the world that you got through a month sans reaction!" and the sense that I had somehow 'failed' immeasurably washed over me. I got angry about this disease; about these reactions; about being in the rescucitation room AGAIN and for the drama that had ensued in the hallway. I wasn't there for my children last night...I felt like I had failed them.
So, you know the drill, post-reaction. Benadryl every 4 hours. Prednisone daily. And all the other meds. Rest. No un-known environments; stay safe. Rest.
This is the first reaction where my lungs haven't hurt. Perhaps the Singulair, Ketotifen & emerg. ventolin are working?
I'm not out of the woods yet. The digestive response to this was huge. I've had pain in my right kidney/adrenal gland since (last night was particularly painful) and my knees/long bones...ugh, someone shoot me.
I got about 1.5 hours sleep last night. Had to hit exhaustion before my body would succumb. Insanity. I did, however, get a good chunk of my final paper for the distance ed. course I'm taking, done.
All in all, a lot less of a reaction than usual. But still not great.
I guess the fact that I made it to a month, is still there. And good.
Ok, new goal...another month reaction-free. Here we come. Trying, at least.
Within a minute of being in Ambulatory Care with my Ortho. Surgeon, I began reacting. When I found it difficult to swallow, I coughed, spluttered and gagged. It wouldn't stop, and then I just couldn't swallow. Totally frightening. Dr. Smythe (Ortho) called nurses for help and to geta wheelchair. A nurse came in, took one look at me and said we didn't have time to get a wheelchair, so they both grabbed me, held me firm and we scooted over to Emerg. just around the corner. However, I lost consciousness and did a face plant in the emerg. hallway. Got that weird all over body tingling sensation, felt by entire body become rag doll-like, and I woke up on the ground face down. Head hurt, and the knee I've just had surgery on in the past few weeks was killing me.
Then I puked and puked the white foamy crap that comes flying out of my body.
The benadryl injection & Epi they gave me in the arms totally did the trick. It all died down.
There's a nurse there, who's always snarky with me. I don't know if this is her attempts at humour or what, but she is brutal. When I was stable, she came in to put my wrist band on and said quietly to me, "that was quite the stunt you pulled out there, eh?" I opted to not react to her. I don't have to justify myself to this woman.
I found myself having a huge emotional reaction to all of this. I started thinking things like, "that'll teach you to go yelling to the world that you got through a month sans reaction!" and the sense that I had somehow 'failed' immeasurably washed over me. I got angry about this disease; about these reactions; about being in the rescucitation room AGAIN and for the drama that had ensued in the hallway. I wasn't there for my children last night...I felt like I had failed them.
So, you know the drill, post-reaction. Benadryl every 4 hours. Prednisone daily. And all the other meds. Rest. No un-known environments; stay safe. Rest.
This is the first reaction where my lungs haven't hurt. Perhaps the Singulair, Ketotifen & emerg. ventolin are working?
I'm not out of the woods yet. The digestive response to this was huge. I've had pain in my right kidney/adrenal gland since (last night was particularly painful) and my knees/long bones...ugh, someone shoot me.
I got about 1.5 hours sleep last night. Had to hit exhaustion before my body would succumb. Insanity. I did, however, get a good chunk of my final paper for the distance ed. course I'm taking, done.
All in all, a lot less of a reaction than usual. But still not great.
I guess the fact that I made it to a month, is still there. And good.
Ok, new goal...another month reaction-free. Here we come. Trying, at least.
Friday, March 6, 2009
It's Been A Good Week, overall
Aside from my youngest daughter suffering an unbreakable fever this week (for 4 days in total), it's been a great week. I've had very little pain, marginal itching, mostly happy airway, pseudo-content gastrointestinal system and, have managed to get some sleep.
Is the Ketotifen helping?
Is the Ketotifen helping?
Sunday, March 1, 2009
Sweet Sleep
Up to 4 pills of Ketotifen and...finally sleep arrived. The worst was at 3 pills. That seems to have been when I couldn't sleep at all.
I slept a sound 12 hours last night, and feel so much better today.
And, I'm feeling better, overall today. Wee hooOOOOOO!!!!!!
Just as well, we're celebrating my fatherinlaw's and my daughter's birthday this afternoon.
I slept a sound 12 hours last night, and feel so much better today.
And, I'm feeling better, overall today. Wee hooOOOOOO!!!!!!
Just as well, we're celebrating my fatherinlaw's and my daughter's birthday this afternoon.
Thursday, February 26, 2009
Over 60
Can't believe that I've not slept in over 60 hours now...maybe longer. I've lost track. Have taken every med under the sun, all my antihistamines, and I'm still awake.
Wednesday, February 25, 2009
Rest
I can't believe I didn't sleep at all last night. Perhaps the drama and stress over this contractor malarky was too much for me yesterday? I can't believe how much pain I was in. I hurt too much to get out of bed to get to pain meds. As I'm sleeping alone at the moment (knee is still healing from surgery two weeks ago), I couldn't ask or nudge anyone. Every long bone & joint in my body felt like someone had taken a mallet to it. My knees, my elbows, my arms, my legs...unreal pain. I wouldn't wish this pain on anyone.
Yesterday, I was on the verge of an anaphylactic reaction. Flushed, fat tongue (but breathing and swallowing), pain in my lungs, anxiety, tachycardia & brachycardia changing places every few minutes, knee and leg pain, hand tremors, couldn't get warm, feeling faint (but didn't pass out...pheeeee-ew)...I used my arsenal of drugs. Kept things at bay. I avoided using Prednisone, as it makes me fat and crazy, until late into the afternoon and it was looking like Epi was inevitable and the drama of Emerg. And, it seems to have made all the difference in the world. Instead of flaring up every 2-3 hours, I managed to go 6 hours. Then everyone went to bed, and I read cozied up in my heat blanket. I assumed I would just fall asleep, with all the anti-histamines I'd taken. But no, the pain was to get the better of me. All the other symptoms subsided and I was left with the pain.
At 2 am, I thought about forcing myself to get up, cross the room, to my desk where the meds are all sitting. It's really strange when you hurt THAT badly, that you can't get to what can help you. It's a very disconcerting feeling. Powerless.
At 3 am, I thought about banging on the walls to wake my husband upstairs. I tried, but it hurt too much to lift my arms. The weight was unreal. I also thought that if I took pain killers now, and maybe a sleeping pill (or half) that at this point, I'd be such a grump, intolerable, unwakeable human being at 7 am that I wouldn't be able to stomach myself. I won't do this to my children, or to my husband. Not any more. I can't live with myself for dumping my agony on them...so I'm choosing not to.
My dog, Charlotte, must've known how I was feeling, because she lay right on top of me...not only keeping me warm, but applying pressure (that helps a bit) to my aching body. I wonder if it'll be worth teaching her to retrieve my 'kit' for me? She's incredibly smart, and sensitive, so it might be possible. Sometimes, I swear, she knows I'm reacting before I do. She won't leave my side, and gets an urgency in her eyes that I've not seen in a dog before.
At 4 am, I cried.
At 5 am, I was still crying.
At 6 am, I tried to get up and couldn't. It hurt too much. I felt pathetic, weak, stupid, powerless, drained, exhausted, angry, useless, and insignificant.
At 6:30 am, I had to tell myself off for being so mean to myself. I tried to meditate but my body screamed louder than my ability to master mind over matter. I told myself it was ok, "I don't have to be strong right now because I'm not." Just let it be.
At 6:45 am, I told myself that it'd be ok. My husband would be getting up in 15 minutes and could help me.
At 7:00 am, he came in. "Morning duck, wakey wakey rise and shine!" I told him that I hadn't slept yet. He asked me why. I said that I was in so much pain, I couldn't sleep. He said that I should expect some pain with my knee surgery. You don't understand, I told him, it wasn't just my knees. He asked me why I hadn't taken my painkillers and maybe a sleeping pill. I hurt too much to get to them. He told me to take some now, and when the girls were on the school bus, back to bed. In his morning daze, he sauntered off to the loo to pee. My meds were still across the room on my desk.
At 7:05 am, my oldest daughter came in for her morning hug. I asked her to get my painkillers from the desk. She did, hugged me and said I looked terrible. I said I'd had a bad night, but I'd be fine. She got me a bottle of water, I reluctantly took two Percosets, and waited.
At 7:15, I got out of bed. I don't use these painkillers very often because they're habit-forming, and while I'm fortunate not to have an addictive personality, I don't want to fall into the unfortunate tunnel of painkiller addiction that is so easy to spiral into. So...I wait, hoping not to have to use this stuff. However, this morning, I was thankful for my empty stomach (vomitting and diahrrea all evening last night) because I felt that wave of relief wash over me very quickly.
I haven't gone back to bed yet. Pain-free, and a bit dazed, after the girls got on the school bus, I took Charlotte for a morning walk. We made it to Tara and Pete's house. My first walk in two weeks. Slower than normal, but we made it. I was careful not to push myself too hard. Listening to Eckhart Tolle on my iPod, Charlotte and I walked in the gorgeous blue-skyed, -2, warmish winter morning. My dog, Eckhart, my camera and my Self, the crunch of the snow underfoot was glorious, we walked. I was really proud of myself for getting to their house.
The pain is starting to creep back up on me now. I may have to take some more painkillers soon, but will wait to see how it goes. My face is flushed, I can't stomach the thought of food and I'm cold. Obviously my Mast Cells aren't happy campers at the moment. So, I need to honour what is happening in my body right now. And rest.
Yesterday, I was on the verge of an anaphylactic reaction. Flushed, fat tongue (but breathing and swallowing), pain in my lungs, anxiety, tachycardia & brachycardia changing places every few minutes, knee and leg pain, hand tremors, couldn't get warm, feeling faint (but didn't pass out...pheeeee-ew)...I used my arsenal of drugs. Kept things at bay. I avoided using Prednisone, as it makes me fat and crazy, until late into the afternoon and it was looking like Epi was inevitable and the drama of Emerg. And, it seems to have made all the difference in the world. Instead of flaring up every 2-3 hours, I managed to go 6 hours. Then everyone went to bed, and I read cozied up in my heat blanket. I assumed I would just fall asleep, with all the anti-histamines I'd taken. But no, the pain was to get the better of me. All the other symptoms subsided and I was left with the pain.
At 2 am, I thought about forcing myself to get up, cross the room, to my desk where the meds are all sitting. It's really strange when you hurt THAT badly, that you can't get to what can help you. It's a very disconcerting feeling. Powerless.
At 3 am, I thought about banging on the walls to wake my husband upstairs. I tried, but it hurt too much to lift my arms. The weight was unreal. I also thought that if I took pain killers now, and maybe a sleeping pill (or half) that at this point, I'd be such a grump, intolerable, unwakeable human being at 7 am that I wouldn't be able to stomach myself. I won't do this to my children, or to my husband. Not any more. I can't live with myself for dumping my agony on them...so I'm choosing not to.
My dog, Charlotte, must've known how I was feeling, because she lay right on top of me...not only keeping me warm, but applying pressure (that helps a bit) to my aching body. I wonder if it'll be worth teaching her to retrieve my 'kit' for me? She's incredibly smart, and sensitive, so it might be possible. Sometimes, I swear, she knows I'm reacting before I do. She won't leave my side, and gets an urgency in her eyes that I've not seen in a dog before.
At 4 am, I cried.
At 5 am, I was still crying.
At 6 am, I tried to get up and couldn't. It hurt too much. I felt pathetic, weak, stupid, powerless, drained, exhausted, angry, useless, and insignificant.
At 6:30 am, I had to tell myself off for being so mean to myself. I tried to meditate but my body screamed louder than my ability to master mind over matter. I told myself it was ok, "I don't have to be strong right now because I'm not." Just let it be.
At 6:45 am, I told myself that it'd be ok. My husband would be getting up in 15 minutes and could help me.
At 7:00 am, he came in. "Morning duck, wakey wakey rise and shine!" I told him that I hadn't slept yet. He asked me why. I said that I was in so much pain, I couldn't sleep. He said that I should expect some pain with my knee surgery. You don't understand, I told him, it wasn't just my knees. He asked me why I hadn't taken my painkillers and maybe a sleeping pill. I hurt too much to get to them. He told me to take some now, and when the girls were on the school bus, back to bed. In his morning daze, he sauntered off to the loo to pee. My meds were still across the room on my desk.
At 7:05 am, my oldest daughter came in for her morning hug. I asked her to get my painkillers from the desk. She did, hugged me and said I looked terrible. I said I'd had a bad night, but I'd be fine. She got me a bottle of water, I reluctantly took two Percosets, and waited.
At 7:15, I got out of bed. I don't use these painkillers very often because they're habit-forming, and while I'm fortunate not to have an addictive personality, I don't want to fall into the unfortunate tunnel of painkiller addiction that is so easy to spiral into. So...I wait, hoping not to have to use this stuff. However, this morning, I was thankful for my empty stomach (vomitting and diahrrea all evening last night) because I felt that wave of relief wash over me very quickly.
I haven't gone back to bed yet. Pain-free, and a bit dazed, after the girls got on the school bus, I took Charlotte for a morning walk. We made it to Tara and Pete's house. My first walk in two weeks. Slower than normal, but we made it. I was careful not to push myself too hard. Listening to Eckhart Tolle on my iPod, Charlotte and I walked in the gorgeous blue-skyed, -2, warmish winter morning. My dog, Eckhart, my camera and my Self, the crunch of the snow underfoot was glorious, we walked. I was really proud of myself for getting to their house.
The pain is starting to creep back up on me now. I may have to take some more painkillers soon, but will wait to see how it goes. My face is flushed, I can't stomach the thought of food and I'm cold. Obviously my Mast Cells aren't happy campers at the moment. So, I need to honour what is happening in my body right now. And rest.
Tuesday, February 24, 2009
Feeling Off
Not feeling so hot today. That'll teach me to have a sip of alcohol. I've been flushing on and off since (two nights ago), stomach distress and today, I feel like someone has taken a mallet to my body as well as sucked the life right out of me. Obviously a sip is too much.
Add to this that I've started on Ketotifen. Have to start at low dose, and increase gradually over a few days. So, yesterday afternoon was the first step up...so, not sure if my malaise/fatigue is due to the increase. Hopefully, it will even out soon. Ketotifen is a mast cell stabilizer and an H1 histamine inhibitor. I read yesterday, on Masto Mama's website, that her little guy is in need of this medication but that it's not available in the USA yet. I spent a good chunk of my night last night trying to think of ways to get it to her. Haven't come up with anything solid yet. She asks if anyone knows of good sources in the USA, to please let her know. Her blog link is in the top right hand corner of this page.
Also, my friend Dawn, in the USA, has been denied her social security claim. This is a huge blow to the little bit of hope that we Masto folks need to have. IF anyone is USA side, or even Canadian side, and has been awarded either Social Security or CPP Long Term Disability based on your Mastocytosis case, PLEASE email me: gypsyprincessa@hotmail.com, so we can help Dawn. I would like to put together a comprehensive list of arguments as to WHY this is vital, needed, deserved and necessary. Please share your story with me. Whoever is adjudicating her case obviously has NO IDEA what it's like living like this. I went through similar trials with my latex allergy claim (before we knew about Mastocytosis...either way, EVERY doctor I have encountered agrees that I need to be on Disability.) Dawn has tried every which way to remain 'functional' but this disease has got her beaten, and now the security system that should be there to protect her in such situations, isn't. I would say her Masto is far more aggressive than mine, and mine is bad.
Anyway, feeling like this means that I need to take it easy today. Maybe moving ALL the living room furniture, piano and tables around yesterday, and cleaning up the contractor's drywall carnage was a bad idea? The living room looks great though. The window guy should be by today to finish up framing out and trimming the three windows and door. It's a different world in my living room. However, after my bath (in a tote box...long story), I will be snuggled down in the family room with my Adult Education Theory books, putting together my next assignment. And napping.
For those living with Masto., or those loving those with Masto., and those living with deadly allergies, my thoughts and warm are with you today. Be safe out there...
Add to this that I've started on Ketotifen. Have to start at low dose, and increase gradually over a few days. So, yesterday afternoon was the first step up...so, not sure if my malaise/fatigue is due to the increase. Hopefully, it will even out soon. Ketotifen is a mast cell stabilizer and an H1 histamine inhibitor. I read yesterday, on Masto Mama's website, that her little guy is in need of this medication but that it's not available in the USA yet. I spent a good chunk of my night last night trying to think of ways to get it to her. Haven't come up with anything solid yet. She asks if anyone knows of good sources in the USA, to please let her know. Her blog link is in the top right hand corner of this page.
Also, my friend Dawn, in the USA, has been denied her social security claim. This is a huge blow to the little bit of hope that we Masto folks need to have. IF anyone is USA side, or even Canadian side, and has been awarded either Social Security or CPP Long Term Disability based on your Mastocytosis case, PLEASE email me: gypsyprincessa@hotmail.com, so we can help Dawn. I would like to put together a comprehensive list of arguments as to WHY this is vital, needed, deserved and necessary. Please share your story with me. Whoever is adjudicating her case obviously has NO IDEA what it's like living like this. I went through similar trials with my latex allergy claim (before we knew about Mastocytosis...either way, EVERY doctor I have encountered agrees that I need to be on Disability.) Dawn has tried every which way to remain 'functional' but this disease has got her beaten, and now the security system that should be there to protect her in such situations, isn't. I would say her Masto is far more aggressive than mine, and mine is bad.
Anyway, feeling like this means that I need to take it easy today. Maybe moving ALL the living room furniture, piano and tables around yesterday, and cleaning up the contractor's drywall carnage was a bad idea? The living room looks great though. The window guy should be by today to finish up framing out and trimming the three windows and door. It's a different world in my living room. However, after my bath (in a tote box...long story), I will be snuggled down in the family room with my Adult Education Theory books, putting together my next assignment. And napping.
For those living with Masto., or those loving those with Masto., and those living with deadly allergies, my thoughts and warm are with you today. Be safe out there...
Friday, February 20, 2009
It's Been A Couple of Good Days...
Living with Systemic Mastocytosis means that you, essentially, learn to 'go with the flow'. Do what you can on good days. Don't on bad days. Perhaps some spiritually sound folks have an easy time with this? Perhaps not. I know that this particular part of my life journey, now with a confirmed Systemic Mastocytosis diagnosis, means that I really need to cut myself some slack. I'm very quick to encourage my friends, family, community to do this...however, taking some of your own medicine can often taste bad, even if it's good for you.
I'm not really enjoying the taste in my mouth; my Self; my soul right now.
Dr. Vadas' comments to me the other day, are ringing clearly, loudly and poignantly in my head. "Fiona, this IS your life. You are going to need to adjust to the reality of this disease."
He's a good, strong, compassionate and understanding doctor. At least my first 3 hours with him say so. I asked my husband tonight if this was real? "Do you think taking all these meds will help? Do you think it's worth it? Do you think they'll work?" My husband pointedly replies, "Honey, you don't have three articles published in the Toronto Star without reason. I think this man knows his shit and I think we need to listen to him." Strong words coming from a man who has hitherto referred to doctors as "quacks" (whether they are allopathic, homeopathic, naturopathic, Chinese Medicine, Ayurvedic, etc.) Where did he see these articles? "They were on his wall," he replies. Whoa, in my self-consumption, I didn't notice anything except Dr. Vadas, the elephant on his desk, the garbage can (I almost threw up in his office) and my husband. Talk about being the center of your own Universe...I didn't even notice this man's credentials and celebrations of his VERY important life work. I was completely absorbed in what he thought was going on with me; and what we could DO about it...if anything.
I understand my self-absorption. It's been a seriously long journey getting to this man. And, to this diagnosis. In the land of Systemic Mastocytosis, you get told and treated like you just have some anxiety issues, and misunderstood by many in the medical profession, as well as in your personal life. You get called a "hypochondriac" and "crazy"...and then worse, you start telling yourself these untruths because...well, for me, I just couldn't understand WHY I was feeling this shitty and WHY I kept having these anaphylactic reactions and WHY I hurt so much in my joints and bones and WHY I was so itchy and WHY the gorgeousity of the mid-day sun made me feel weak, itchy, and fatigued beyond belief and WHY I couldn't keep my body temperature comfortable (I get REALLY cold) and many many more WHY's.
I sent a modified version of my last blog post to my family and close friends (who are really like family to me, and since I REALLY believe we are part of a global family, I am no longer going to make the distinction.) I did this for a number of reasons. Firstly, because they care and, independent of one another, have inquired about what's going on with me and my health situation at some point during the past year...especially when it's been posted on Facebook that I've just had a reaction, or am in the hospital AGAIN, or recovering from reactions. Sometimes I get to post that, and sometimes my husband posts for me...so that my family know the reason for my silence. Secondly, it seemed the more I sent this message, and wrote introductions to it, the more this all became a little bit more real for me. We should never underestimate the power of denial in our lives. Or the power of sharing, for healing. Or, the power of words. Perhaps that's why I write.
I've been encouraging my good friend Dawn, who has SM, to keep her chin up and, not to let the despair get to her - despite losing her home; her ability to help provide an income for her family; her loss of her career & her identity; and, the multitudes of fear and stress she undergoes every time she suffers a reaction, or an episode. She lives in the USA where she and her husband have to fork out, straight out, of their pockets for her healthcare. You can read about her journey with this disease on her blog: http://thebreakoffdawn.blogspot.com/ In the USA, having an illness and insufficient, or no, private insurance can just about kill a family financially (not to mention ALL the stress that goes with that) and with the present recession, it's even worse. So, they lost it all, and have had to start new without home ownership. But you can't put a price on healthcare or the necessary pricetag that comes with keeping you alive...and that price needs to be paid. Dawn is worth it. She's an incredible woman, with twin daughters that need her, a man that loves her unconditionally and a family that love her too.
Like Dawn, I have also lost my ability to have a career; contribute financially to my family; my identity and while I live in a FABULOUS country, with its healthcare coverage (for which I am utterly grateful), I find myself feeling like a total hypocrite right now...for encouraging her to be the best she can be inside of this disease and her losses. Because this sucks. REALLY sucks.
Aren't I lucky that we haven't lost our home yet (because Canada picks up the tab for my healthcare...and, thank you!) and we have insurance with my husband's job...and thank goodness for that because otherwise, we'd be approximately $6,000.00 in the hole right now. My Epi pens, alone, at $115.00 a pop and needing almost 40 of them last year alone...well, you get the picture. That doesn't include ambulance rides, and the cost of my ACTUAL care at the hospital or my stays there. Dawn can tell you what it REALLY costs...because they've had to pay it.
I encourage Dawn to embrace the love of her husband, her children, her family and the love that we need to have for ourselves because, quite frankly, it's NOT easy being non-functional. And with this disease, we have lots of non-functional days. Dawn and I both share the massive sense of guilt and self-beratement that comes with being non-functional...because our whole lives we've been functional, and more. I know that Dawn would tell me not to be so hard on myself because what I WANT to write, and express, is my utter anger at having this disease, these reactions and I'm totally pissed off about the loss of my freedoms.
This too, will pass. Denial. Anger. Acceptance...all part of the grieving cycle. And that's what it's like to have a life-threatening &/or terminal illness. Our 'what is's outweigh our 'what we'd like's. And that's just how it is.
So as I swallow the taste in my mouth, the taste of Systemic Mastocytosis. I try to cut myself a little slack because this disease does not make me a failure...despite my feeling like one. And, like I said in my message to my family, there has to be a silver lining in all of this somewhere...because without this hope, it's not worth getting out of bed in the morning. And I need to get out of bed, especially when I don't feel strong enough to.
I'm not really enjoying the taste in my mouth; my Self; my soul right now.
Dr. Vadas' comments to me the other day, are ringing clearly, loudly and poignantly in my head. "Fiona, this IS your life. You are going to need to adjust to the reality of this disease."
He's a good, strong, compassionate and understanding doctor. At least my first 3 hours with him say so. I asked my husband tonight if this was real? "Do you think taking all these meds will help? Do you think it's worth it? Do you think they'll work?" My husband pointedly replies, "Honey, you don't have three articles published in the Toronto Star without reason. I think this man knows his shit and I think we need to listen to him." Strong words coming from a man who has hitherto referred to doctors as "quacks" (whether they are allopathic, homeopathic, naturopathic, Chinese Medicine, Ayurvedic, etc.) Where did he see these articles? "They were on his wall," he replies. Whoa, in my self-consumption, I didn't notice anything except Dr. Vadas, the elephant on his desk, the garbage can (I almost threw up in his office) and my husband. Talk about being the center of your own Universe...I didn't even notice this man's credentials and celebrations of his VERY important life work. I was completely absorbed in what he thought was going on with me; and what we could DO about it...if anything.
I understand my self-absorption. It's been a seriously long journey getting to this man. And, to this diagnosis. In the land of Systemic Mastocytosis, you get told and treated like you just have some anxiety issues, and misunderstood by many in the medical profession, as well as in your personal life. You get called a "hypochondriac" and "crazy"...and then worse, you start telling yourself these untruths because...well, for me, I just couldn't understand WHY I was feeling this shitty and WHY I kept having these anaphylactic reactions and WHY I hurt so much in my joints and bones and WHY I was so itchy and WHY the gorgeousity of the mid-day sun made me feel weak, itchy, and fatigued beyond belief and WHY I couldn't keep my body temperature comfortable (I get REALLY cold) and many many more WHY's.
I sent a modified version of my last blog post to my family and close friends (who are really like family to me, and since I REALLY believe we are part of a global family, I am no longer going to make the distinction.) I did this for a number of reasons. Firstly, because they care and, independent of one another, have inquired about what's going on with me and my health situation at some point during the past year...especially when it's been posted on Facebook that I've just had a reaction, or am in the hospital AGAIN, or recovering from reactions. Sometimes I get to post that, and sometimes my husband posts for me...so that my family know the reason for my silence. Secondly, it seemed the more I sent this message, and wrote introductions to it, the more this all became a little bit more real for me. We should never underestimate the power of denial in our lives. Or the power of sharing, for healing. Or, the power of words. Perhaps that's why I write.
I've been encouraging my good friend Dawn, who has SM, to keep her chin up and, not to let the despair get to her - despite losing her home; her ability to help provide an income for her family; her loss of her career & her identity; and, the multitudes of fear and stress she undergoes every time she suffers a reaction, or an episode. She lives in the USA where she and her husband have to fork out, straight out, of their pockets for her healthcare. You can read about her journey with this disease on her blog: http://thebreakoffdawn.blogspot.com/ In the USA, having an illness and insufficient, or no, private insurance can just about kill a family financially (not to mention ALL the stress that goes with that) and with the present recession, it's even worse. So, they lost it all, and have had to start new without home ownership. But you can't put a price on healthcare or the necessary pricetag that comes with keeping you alive...and that price needs to be paid. Dawn is worth it. She's an incredible woman, with twin daughters that need her, a man that loves her unconditionally and a family that love her too.
Like Dawn, I have also lost my ability to have a career; contribute financially to my family; my identity and while I live in a FABULOUS country, with its healthcare coverage (for which I am utterly grateful), I find myself feeling like a total hypocrite right now...for encouraging her to be the best she can be inside of this disease and her losses. Because this sucks. REALLY sucks.
Aren't I lucky that we haven't lost our home yet (because Canada picks up the tab for my healthcare...and, thank you!) and we have insurance with my husband's job...and thank goodness for that because otherwise, we'd be approximately $6,000.00 in the hole right now. My Epi pens, alone, at $115.00 a pop and needing almost 40 of them last year alone...well, you get the picture. That doesn't include ambulance rides, and the cost of my ACTUAL care at the hospital or my stays there. Dawn can tell you what it REALLY costs...because they've had to pay it.
I encourage Dawn to embrace the love of her husband, her children, her family and the love that we need to have for ourselves because, quite frankly, it's NOT easy being non-functional. And with this disease, we have lots of non-functional days. Dawn and I both share the massive sense of guilt and self-beratement that comes with being non-functional...because our whole lives we've been functional, and more. I know that Dawn would tell me not to be so hard on myself because what I WANT to write, and express, is my utter anger at having this disease, these reactions and I'm totally pissed off about the loss of my freedoms.
This too, will pass. Denial. Anger. Acceptance...all part of the grieving cycle. And that's what it's like to have a life-threatening &/or terminal illness. Our 'what is's outweigh our 'what we'd like's. And that's just how it is.
So as I swallow the taste in my mouth, the taste of Systemic Mastocytosis. I try to cut myself a little slack because this disease does not make me a failure...despite my feeling like one. And, like I said in my message to my family, there has to be a silver lining in all of this somewhere...because without this hope, it's not worth getting out of bed in the morning. And I need to get out of bed, especially when I don't feel strong enough to.
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