The regulation mechanism for the flame thrower in my throat has gone awry. It activates at will. No schedule, no warning--just whooosh, and the invisible flames. After years of taking anti-inflammatories, Methotrexate and other medications; the regulation of acid from my stomach north seems to have gone haywire.
It's not so much a new problem--ulcers have been a reality for me since my late teens. The late night burning is nothing new. What is new, now, is the escalation of that burning. It rises up from my stomach as I would imagine a toilet overflowing. Sometimes in my minds-eye, I foresee a gush of blood perhaps appearing. Flames at the least. Nothing but acid so far, but in time, I'm afraid it will get the better of me.
With a stomach like mine, Nexium is a close friend, but not a saving grace. I've been told that age is no friend as it relates to stomach problems and acid reflux; so I'll think of that as a downer. I do wonder what role auto-immune disease plays in this process. I'm hoping for a cure--or at least some significant relief.
Bibliography
http://www.medhelp.org/posts/GERD-Acid-Reflux/Autoimmune-disease-and-acid-reflux/show/586218
http://www.webmd.com/heartburn-gerd/guide/understanding-heartburn-basics
Wednesday, September 30, 2009
Saturday, September 26, 2009
The Reality of Red Stripe
I broke the cardinal pool-rule today and drank a cold Red Stripe in the jacuzzi. The rule is not about the beer--it's about having the glass near the pool. A safety thing--for others! But I've also been observing a strict limit on beer for at least the last six months. For some people, this might have been a great sacrifice. For me, it was more of an inconvenience.
Methatrexate, you see, is not friendly on the liver which leaves little room for the joys of alcohol. Among the cornucopia of libations, beer is the only one I missed this year. However, now that I'm off my medication and awaiting an evaluation with the oncologist, I said "what the hell--might as well enjoy something just now."
I've had a headache all day, been tired, limping and my back is hurting, top to bottom. During my training class today, it was difficult to sit. I had to get up three times in three hours, and figet a lot. So, my reward for this day--bubbles, heat, a warm evening; and Red Stripe. It was a great way to wrap the day.
Bibliography
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html
http://arthritis.about.com/od/alcohol/f/alcohol.htm
http://www.ehow.com/about_4623891_can-drink-alcohol-taking-methotrexate.html
Methatrexate, you see, is not friendly on the liver which leaves little room for the joys of alcohol. Among the cornucopia of libations, beer is the only one I missed this year. However, now that I'm off my medication and awaiting an evaluation with the oncologist, I said "what the hell--might as well enjoy something just now."
I've had a headache all day, been tired, limping and my back is hurting, top to bottom. During my training class today, it was difficult to sit. I had to get up three times in three hours, and figet a lot. So, my reward for this day--bubbles, heat, a warm evening; and Red Stripe. It was a great way to wrap the day.
Bibliography
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html
http://arthritis.about.com/od/alcohol/f/alcohol.htm
http://www.ehow.com/about_4623891_can-drink-alcohol-taking-methotrexate.html
Wednesday, September 23, 2009
Sick Behavior
Who would think they'd be unable to care for themselves at 41? It's like a nightmare that doesn't end. It seems to be my new reality. This really hit me like a ton of bricks today while I sat and talked to my Mother, as my Dad trimmed the grass at my place.
At my Dad's age, I'm fairly sure he thought this might be the other way around. But, it's not. I need help with lots of things and my pensioner-parents do take up some of that slack, like the times my Mother has had to help me out of a chair. That's really interesting. Yard work and heavy lifting are in the "forget-about-it" zone for me. That's a favor or a hire out. Once my neighbor mowed for me, which was a charm. I'm sure she must feel sorry for me when she sees me walking hunched over with the cane, and taking about five minutes to get out of the car.
What a sight I must be. Overweight, disabled, barely able to walk. When you're sick there's something else too: sick behavior. Google it for yourself. When you're sick, you stop caring how you look. A good hair cut is only fun when they style it in the shop. It takes too much energy to do it yourself. Nice clothes--same. You gain so much weight when you're sick and not moving around much that the things you buy don't fit for long. Even when they do fit, they don't seem to be flattering. Nothing is. Makeup--forget it; too much effort.
Thinking about eating healthy is good. I try that; but it succumbs to sick behavior too. Every day I have my fruit and vegetable juice. No meat. Not much sweets. But, the joy of pretzels or potato chips or some other calorie laden food is hard to deny when it's all you have to look forward to that day. After all, there's no work and nothing that requires much physical or mental commitment--it's too hard to predict when you can participate.
Some days I do try harder. But on the bad days, I really don't care. It's part of the profile. Look it up, really. Sick behavior. It will help you understand the sick, the struggling, the disabled. Your priorities change. When you're helpless, the usual stuff doesn't matter. This day began with pain, exhaustion, a distint limp, a severe headache and a sore throat. Life is a struggle.
Bibliography
http://www.answers.com/topic/sickness-behavior
http://psychology.wikia.com/wiki/Sickness_behavior
https://www.harvardpilgrim.org/portal/page?_pageid=213,260661&_dad=portal&_schema=PORTAL
http://www.sicksyndrome.com/
At my Dad's age, I'm fairly sure he thought this might be the other way around. But, it's not. I need help with lots of things and my pensioner-parents do take up some of that slack, like the times my Mother has had to help me out of a chair. That's really interesting. Yard work and heavy lifting are in the "forget-about-it" zone for me. That's a favor or a hire out. Once my neighbor mowed for me, which was a charm. I'm sure she must feel sorry for me when she sees me walking hunched over with the cane, and taking about five minutes to get out of the car.
What a sight I must be. Overweight, disabled, barely able to walk. When you're sick there's something else too: sick behavior. Google it for yourself. When you're sick, you stop caring how you look. A good hair cut is only fun when they style it in the shop. It takes too much energy to do it yourself. Nice clothes--same. You gain so much weight when you're sick and not moving around much that the things you buy don't fit for long. Even when they do fit, they don't seem to be flattering. Nothing is. Makeup--forget it; too much effort.
Thinking about eating healthy is good. I try that; but it succumbs to sick behavior too. Every day I have my fruit and vegetable juice. No meat. Not much sweets. But, the joy of pretzels or potato chips or some other calorie laden food is hard to deny when it's all you have to look forward to that day. After all, there's no work and nothing that requires much physical or mental commitment--it's too hard to predict when you can participate.
Some days I do try harder. But on the bad days, I really don't care. It's part of the profile. Look it up, really. Sick behavior. It will help you understand the sick, the struggling, the disabled. Your priorities change. When you're helpless, the usual stuff doesn't matter. This day began with pain, exhaustion, a distint limp, a severe headache and a sore throat. Life is a struggle.
Bibliography
http://www.answers.com/topic/sickness-behavior
http://psychology.wikia.com/wiki/Sickness_behavior
https://www.harvardpilgrim.org/portal/page?_pageid=213,260661&_dad=portal&_schema=PORTAL
http://www.sicksyndrome.com/
Tuesday, September 22, 2009
Crushing Blow
Imagine every joint in your body has been hit with a hammer. You know they would throb, ache, swell and undoubtedly capture an inordinate amount of your attention. Days like today make me think of these interesting analogies. The pain is a like a full-body, crushing blow.
The throbbing and painful feet, toes, fingers, hands, back, butt and pelvis are only the beginning. Accompanying that ravel is a headache that feels like the one you've had after trying to quit caffeine; remember? It's a strain to stay mobile, but it's required of a Mom. I am steadfastly committed to that--my only day job. Some days I wonder if I'll complete all the tasks at hand. Other days, I simply don't. Emotionally, that's also a crushing blow.
Back in the days of my youth, I can remember working two and even three jobs. Never sleeping. Eating on the run--living on vegetarian soft tacos or Mexican pizzas. A good, home cooked meal was pasta or a can of vegetables. Life was easy. It was possible to clean house, party and handle any of the responsibilities that life threw my way. Now, it's all over.
Each day is escalating into a frenzy. I'm frenetic. It's difficult to think straight, while working through the pain. My saving grace, now, and focus is getting finished in the car so I can take something. I could never have foreseen my life taking this direction. Nevertheless, drugs are my friend now and my resource for managing the pain--and the day. It's, most definitely, a crushing blow.
Bibliography
http://arthritis-symptom.com/Psoriatic-arthritis-symptoms/
http://arthritis.about.com/od/pa/a/symptoms.htm
http://www.spondylitis.org/about/psoriatic_sym.aspx
The throbbing and painful feet, toes, fingers, hands, back, butt and pelvis are only the beginning. Accompanying that ravel is a headache that feels like the one you've had after trying to quit caffeine; remember? It's a strain to stay mobile, but it's required of a Mom. I am steadfastly committed to that--my only day job. Some days I wonder if I'll complete all the tasks at hand. Other days, I simply don't. Emotionally, that's also a crushing blow.
Back in the days of my youth, I can remember working two and even three jobs. Never sleeping. Eating on the run--living on vegetarian soft tacos or Mexican pizzas. A good, home cooked meal was pasta or a can of vegetables. Life was easy. It was possible to clean house, party and handle any of the responsibilities that life threw my way. Now, it's all over.
Each day is escalating into a frenzy. I'm frenetic. It's difficult to think straight, while working through the pain. My saving grace, now, and focus is getting finished in the car so I can take something. I could never have foreseen my life taking this direction. Nevertheless, drugs are my friend now and my resource for managing the pain--and the day. It's, most definitely, a crushing blow.
Bibliography
http://arthritis-symptom.com/Psoriatic-arthritis-symptoms/
http://arthritis.about.com/od/pa/a/symptoms.htm
http://www.spondylitis.org/about/psoriatic_sym.aspx
Monday, September 21, 2009
Borborygmus
I felt like a tiger who hadn't eaten in days. From 10 a.m. on--hungry. Borborygmus belly. Craving salt, craving garlic, craving vegetables. The nausea and salt go together--always have. Whenever I get nausea, which is a lot, I want something salty. In those cases, it really doesn't matter if I'm hungry. But today, two needs to be met.
So, I had a bowl of macaroni and cheese at lunch time. Then, a lovely mid-day swim in the bright sunshine. It was great. Later, some pretzels. Then, a veggie sub with tons of salt and garlic salt. It's finally satisfied. Hopefully it will last.
Outside of my hunger pangs today, I have been consistently exhausted. You know how you feel when you've had a great work out and just feel weighted. That's me, minus the workout. I also keep getting hot at night and am now having pain in my left leg. I'm also having a headache and abdominal pain today and it's difficult to walk.
Sorry to Jack the dog, who didn't get his walk today. To appease him, I shared the bread from my sandwich. He loved it. So, my borborygmus belly indirectly brought him a little pleasure, at least.
So, I had a bowl of macaroni and cheese at lunch time. Then, a lovely mid-day swim in the bright sunshine. It was great. Later, some pretzels. Then, a veggie sub with tons of salt and garlic salt. It's finally satisfied. Hopefully it will last.
Outside of my hunger pangs today, I have been consistently exhausted. You know how you feel when you've had a great work out and just feel weighted. That's me, minus the workout. I also keep getting hot at night and am now having pain in my left leg. I'm also having a headache and abdominal pain today and it's difficult to walk.
Sorry to Jack the dog, who didn't get his walk today. To appease him, I shared the bread from my sandwich. He loved it. So, my borborygmus belly indirectly brought him a little pleasure, at least.
Holy Humira!
When the scans came back with tons of new stuff in my abdomen, I was a bit surprised. Not shocked, because there had been some problems. A few lesions were tested and did not show cancer. To be safe, half of the thyroid was removed and a monitoring regimen initiated. All that stuff seemed resolved, until now.
The saving grace for my particularly inveterate case of arthritis was Humira. There are side effects listed on the pamphlet that comes with the drug. You know, the one that is written in about font size 2 and is folded about 20 times so it looks small. When you open it, there's a complete compendium of potential problems. My doctor assured me, however, that she would never suggest anything that she had concerns about. I trust her. She's nice and caring. So, I agreed. Here comes the Humira.
Three months have lapsed and the arthritis has gotten worse. No cycles at all. Foot is permanently swollen and painful. Still have abdominal cramps. Have had bladder pain. Low back, mid back and neck are all very painful; every day now that I really think about it. And, the hip. I can barely walk some days. When I can walk, it's painful and any wobble, stretch or too much walking will set me back to square one--pain and needing help walking. So, the consequences are high. Humira has not helped, and maybe it's hurt.
My regular monitoring now reveals there is fluid, another lesion, a complex cyst, a bone lesion. What's that about? My doctor is really concerned with this and tells me to stop all my medications, including Humira. I do. I have no change in pain level but, boy, does my head feel quite a bit clearer. I still get to that zone where I'm restless and can't concentrate, but I have been able to think of some words this week without as much struggle as I had been having.
Nouns. Adjectives. They have once again become a part of my memory. When I want to describe something, I no longer have to say, "you know," "the thing with the," "um" -- you get the picture. Now I can call something brown--brown. Without struggling to find that word. So, that's a good thing. But, there's bad.
In my regular Internet searching, 'humira side effects' has been my most frequently used search phrase. It's shocking what people are saying in blogs and discussion boards. And, I should preface this with my general feeling about information I find on the Internet and in blogs. It's great fast access. It's great to use as a resource for opinion, lists of questions, etc. Some things are obviously better than others. Blogs are great, too, because people will spill it all. Generally, they're mad. So, you will read about all the bad things and never really have a reference to how many satisfied and happy patrons of a product (or cause) are not talking in the land of blog. So, I do try to keep my searching in an appropriate context.
Nevertheless, my searching led me to scary-land with discussion board entries such as "Humira killed my husband." Ok, what the ? Over and over, the complaints about Humira were scrolling down my screen. Most pointedly were the many entries I found suspecting a link between Humira use and lymphoma and/or MS. So, now I'm paranoid. I want to be in my rational mind and know that I'm only reading from those who have something and blame it on this drug. But, maybe I'm not.
After three months of use, I'm not better. And, now I have tons of stuff growing in my abdomen and can't walk normally any more. Coincidence? No clue. But, for now, my suspiciousness is keeping me away from it all until I figure out what's happening. I'll take the pain, as the consequence is just too high for me.
Bibliography
http://arthritis.about.com/cs/druggen/a/newdrugsafety.htm
http://www.bioportfolio.com/news/biotracker_74.htm
http://www.aboutlawsuits.com/fda-enbrel-humira-remicade-lymphoma-cancer-children-180/
The saving grace for my particularly inveterate case of arthritis was Humira. There are side effects listed on the pamphlet that comes with the drug. You know, the one that is written in about font size 2 and is folded about 20 times so it looks small. When you open it, there's a complete compendium of potential problems. My doctor assured me, however, that she would never suggest anything that she had concerns about. I trust her. She's nice and caring. So, I agreed. Here comes the Humira.
Three months have lapsed and the arthritis has gotten worse. No cycles at all. Foot is permanently swollen and painful. Still have abdominal cramps. Have had bladder pain. Low back, mid back and neck are all very painful; every day now that I really think about it. And, the hip. I can barely walk some days. When I can walk, it's painful and any wobble, stretch or too much walking will set me back to square one--pain and needing help walking. So, the consequences are high. Humira has not helped, and maybe it's hurt.
My regular monitoring now reveals there is fluid, another lesion, a complex cyst, a bone lesion. What's that about? My doctor is really concerned with this and tells me to stop all my medications, including Humira. I do. I have no change in pain level but, boy, does my head feel quite a bit clearer. I still get to that zone where I'm restless and can't concentrate, but I have been able to think of some words this week without as much struggle as I had been having.
Nouns. Adjectives. They have once again become a part of my memory. When I want to describe something, I no longer have to say, "you know," "the thing with the," "um" -- you get the picture. Now I can call something brown--brown. Without struggling to find that word. So, that's a good thing. But, there's bad.
In my regular Internet searching, 'humira side effects' has been my most frequently used search phrase. It's shocking what people are saying in blogs and discussion boards. And, I should preface this with my general feeling about information I find on the Internet and in blogs. It's great fast access. It's great to use as a resource for opinion, lists of questions, etc. Some things are obviously better than others. Blogs are great, too, because people will spill it all. Generally, they're mad. So, you will read about all the bad things and never really have a reference to how many satisfied and happy patrons of a product (or cause) are not talking in the land of blog. So, I do try to keep my searching in an appropriate context.
Nevertheless, my searching led me to scary-land with discussion board entries such as "Humira killed my husband." Ok, what the ? Over and over, the complaints about Humira were scrolling down my screen. Most pointedly were the many entries I found suspecting a link between Humira use and lymphoma and/or MS. So, now I'm paranoid. I want to be in my rational mind and know that I'm only reading from those who have something and blame it on this drug. But, maybe I'm not.
After three months of use, I'm not better. And, now I have tons of stuff growing in my abdomen and can't walk normally any more. Coincidence? No clue. But, for now, my suspiciousness is keeping me away from it all until I figure out what's happening. I'll take the pain, as the consequence is just too high for me.
Bibliography
http://arthritis.about.com/cs/druggen/a/newdrugsafety.htm
http://www.bioportfolio.com/news/biotracker_74.htm
http://www.aboutlawsuits.com/fda-enbrel-humira-remicade-lymphoma-cancer-children-180/
Sunday, September 20, 2009
Compendium of Complaints
The dog was so sad yesterday. Every time I got ready to leave, he would pop to his feet and jog playfully toward me. Jack loves to go with me--anywhere. He gets an outing at least once a day, and his anticipation remains high until it happens. And, believe me, he knows it's going to happen.
Yesterday was no exception. He waited all day. Finally, at the late hour of about eight o'clock, after dinner; I told my husband we needed to at least walk him around the block. Jack was elated. We leashed him up and headed down the street. He pranced with pleasure.
My knee nearly hit the pavement about two blocks down. The pain in my abdomen was so intense I could not stand. My husband grabbed my arm and held on. It was dramatic. Me, hunched over, breathing hard, sweating. Him, holding on to me with all his strength, saying, "let me go get the car." Me, saying, "no, this has happened before--it will pass." It did eventually pass. We turned around and came home.
For years I have endured these cramps. For years, I've had no answer. Just a big lesion there--benign says the lab. Why does it trouble me so? Maybe it should be escalated to a new category called angry-benign. That title would suit it better.
My night was interrupted. My blog post #5 foregone. Among my other complaints of the day, this one was remarkable. It made me start limping again. Maybe Mr. Angry-Benign is touching a nerve? I don't know, but two blocks is not enough to cut it. I've been sweating ever since.
It would be remiss not to log my symptoms from yesterday and today. So, it will be in abbreviated fashion. I have a headache. That's only one--here are the rest.
Backache
Limp
Abdominal pain
Sweating
Headache
Nausea
Acid Reflux
Foot ache
Knee pain
Exhaustion
Neck pain
Blisters on my head
Can't concentrate
That's all I can think of -- I'm tired. Did I list that?
Yesterday was no exception. He waited all day. Finally, at the late hour of about eight o'clock, after dinner; I told my husband we needed to at least walk him around the block. Jack was elated. We leashed him up and headed down the street. He pranced with pleasure.
My knee nearly hit the pavement about two blocks down. The pain in my abdomen was so intense I could not stand. My husband grabbed my arm and held on. It was dramatic. Me, hunched over, breathing hard, sweating. Him, holding on to me with all his strength, saying, "let me go get the car." Me, saying, "no, this has happened before--it will pass." It did eventually pass. We turned around and came home.
For years I have endured these cramps. For years, I've had no answer. Just a big lesion there--benign says the lab. Why does it trouble me so? Maybe it should be escalated to a new category called angry-benign. That title would suit it better.
My night was interrupted. My blog post #5 foregone. Among my other complaints of the day, this one was remarkable. It made me start limping again. Maybe Mr. Angry-Benign is touching a nerve? I don't know, but two blocks is not enough to cut it. I've been sweating ever since.
It would be remiss not to log my symptoms from yesterday and today. So, it will be in abbreviated fashion. I have a headache. That's only one--here are the rest.
Backache
Limp
Abdominal pain
Sweating
Headache
Nausea
Acid Reflux
Foot ache
Knee pain
Exhaustion
Neck pain
Blisters on my head
Can't concentrate
That's all I can think of -- I'm tired. Did I list that?
Friday, September 18, 2009
Grip be Gone
Eight is a stretch for me. Usually, I'm working on rest by about five o'clock, but today, I stretched it a few hours. The day was productive. Errands, lunch at the health food store featuring vegetarian pasta, Acai smoothie and wheat grass, and a nice evening swim.
The headache is here, the malaise still hanging around, and the pain is quite intense. Despite those usual complaints, today is marked for me by a new symptom. Gripping the hose. I tried to rinse the pool deck and could only grip the hose for about ten minutes. My hand is now tired and achy.
It's difficult to concentrate and fight the fatigue today. My mind needs to rest now.
The headache is here, the malaise still hanging around, and the pain is quite intense. Despite those usual complaints, today is marked for me by a new symptom. Gripping the hose. I tried to rinse the pool deck and could only grip the hose for about ten minutes. My hand is now tired and achy.
It's difficult to concentrate and fight the fatigue today. My mind needs to rest now.
Thursday, September 17, 2009
No Cane Do
An excellent day has no cane in it. Today was excellent. I was tired, nauseous and in the usual pain; belly was swollen and I feel like I have the flu. But the cane stayed home while I ran a few errands and took a brief but wonderful walk in the park with my dog, Jack. This is the third day running that no cane has accompanied me. I can walk, get out of bed, get out of a chair and my car without help.
There is that moment when I first stand, however, hunched over and frozen in time for about 60 seconds. It's always the time when someone will look my way with an expression of great concern. I sense that they're not sure is they should help me. They don't--never do. Mostly, they look embarrassed for staring at someone who obviously can't move. Cane days are even more awkward.
There's something about the cane that instigates a pity response from people. The little cane elicits less than the big, four legged, cane. You know the kind you only see little old ladies using. Being seen with it is an outright statement of serious disability. It's the best, though.
That big cane will steady my shaking body and I can grab it with two hands like a burly home health aide and pull myself right out of bed. As I shake, it will hold me upright for that scary moment or two when I'm not certain I can do it. It's my synthetic helper and it gives me confidence. I should call it "Big Joe" or something. Maybe I will.
I digress with my display of affinity for Big Joe. But, back to my prescient objective of documenting my functionality for Big Brother. I was functional from 10 a.m. to 5 p.m. Now it's over. My back aches and I need to lie down and rest; reflect on a good day. Today was not pain free but cane free.
There is that moment when I first stand, however, hunched over and frozen in time for about 60 seconds. It's always the time when someone will look my way with an expression of great concern. I sense that they're not sure is they should help me. They don't--never do. Mostly, they look embarrassed for staring at someone who obviously can't move. Cane days are even more awkward.
There's something about the cane that instigates a pity response from people. The little cane elicits less than the big, four legged, cane. You know the kind you only see little old ladies using. Being seen with it is an outright statement of serious disability. It's the best, though.
That big cane will steady my shaking body and I can grab it with two hands like a burly home health aide and pull myself right out of bed. As I shake, it will hold me upright for that scary moment or two when I'm not certain I can do it. It's my synthetic helper and it gives me confidence. I should call it "Big Joe" or something. Maybe I will.
I digress with my display of affinity for Big Joe. But, back to my prescient objective of documenting my functionality for Big Brother. I was functional from 10 a.m. to 5 p.m. Now it's over. My back aches and I need to lie down and rest; reflect on a good day. Today was not pain free but cane free.
Wednesday, September 16, 2009
Energy, Enthusiasm, Enmity
Energy, enthusiasm, enmity. What's that mean? Today was a great day, mostly. It started with a virtually sleepless night and then a light nap from about 5:00 - 9:30 a.m. No cane needed today; just about five extra minutes to straighten up when ascending from the seat of my car. The walking speeds up slowly--from the pace of a turtle to the crawl of a competent seven month old. Greased Lightning would never be my nickname.
Today featured some nausea...some pain and limping on the right hip...some left foot pain...a slight headache...a neck ache...a lower back ache; but who's keeping tabs? I am. Today was massage day, though, and that's always a good day.
Like nothing else, massage relieves my spastic muscles and helps me breathe easier. From the small stiff muscles between my ribs to the large muscles surrounding my hips and thighs; there's no better remedy than a lot of elbow grease by a capable therapist.
Without any medication to make me feel like I'm walking in quicksand, I'm quite enthusiastic. Life feels so much better, drug free. The pain is my noticeable foe; however. It is enthusiastic, too; making it's presence known. Free from the interference of drugs and with its distinct personality, my pain taunts me at will. It's like an enemy hiding just over the hill--never revealing when it will attack. My pain has the advantage. It's on the inside. It knows the enemy has suspended all efforts--revealed a vulnerability in it's line. So, I wait and wonder what is next; and prepare for the enmity.
Enmity for the pain. It's a part of me but not a cherished attribute. It controls me. It makes me tired. I'm tired today. Eight o'clock and I'm in nightie. Finished. When pain wants to make me frenetic, it does. When it eats my bones and soft tissues from the inside, I can't stop it. I hate my pain. Today, I didn't let it stop me. I endeavoured to complete a five item to do list--and did! Return to enthusiasm.
Today featured some nausea...some pain and limping on the right hip...some left foot pain...a slight headache...a neck ache...a lower back ache; but who's keeping tabs? I am. Today was massage day, though, and that's always a good day.
Like nothing else, massage relieves my spastic muscles and helps me breathe easier. From the small stiff muscles between my ribs to the large muscles surrounding my hips and thighs; there's no better remedy than a lot of elbow grease by a capable therapist.
Without any medication to make me feel like I'm walking in quicksand, I'm quite enthusiastic. Life feels so much better, drug free. The pain is my noticeable foe; however. It is enthusiastic, too; making it's presence known. Free from the interference of drugs and with its distinct personality, my pain taunts me at will. It's like an enemy hiding just over the hill--never revealing when it will attack. My pain has the advantage. It's on the inside. It knows the enemy has suspended all efforts--revealed a vulnerability in it's line. So, I wait and wonder what is next; and prepare for the enmity.
Enmity for the pain. It's a part of me but not a cherished attribute. It controls me. It makes me tired. I'm tired today. Eight o'clock and I'm in nightie. Finished. When pain wants to make me frenetic, it does. When it eats my bones and soft tissues from the inside, I can't stop it. I hate my pain. Today, I didn't let it stop me. I endeavoured to complete a five item to do list--and did! Return to enthusiasm.
Tuesday, September 15, 2009
Beggars Can't be Choosers
Beggars can't be choosers because they're losers. Makes sense to me. I'm sick and a loser. Not because I say so. My government said so. Losers lose choices and have to prove they need help. Apparently, there has been a run on those claiming to be disabled who are not. Or, someone has perceived that. In any case, it's now my job to document what ails me on a daily basis. So, I'm a good girl and I'll do it.
Today: not taking my chemo or biological medicine because they're incompatible with surgery, which i may need immediately...my left foot is swollen and throbbing...it hurts to walk...my middle toe on the left foot aches too...my hip is hurting and i'm limping on the right side...my entire lower back is aching and painful...i can sit for about 30 minutes and then need to lay or stand...every few minutes i change position...my backside is throbbing...the muscles under my scapulae are throbbing...i have a headache...my right arm is achy...my neck hurts on right side and muscles are very tight...this is a good day...no cane...awake...but will probably take something shortly...could not take pain medications earlier because i had to drive the car.
Today: not taking my chemo or biological medicine because they're incompatible with surgery, which i may need immediately...my left foot is swollen and throbbing...it hurts to walk...my middle toe on the left foot aches too...my hip is hurting and i'm limping on the right side...my entire lower back is aching and painful...i can sit for about 30 minutes and then need to lay or stand...every few minutes i change position...my backside is throbbing...the muscles under my scapulae are throbbing...i have a headache...my right arm is achy...my neck hurts on right side and muscles are very tight...this is a good day...no cane...awake...but will probably take something shortly...could not take pain medications earlier because i had to drive the car.
400 Days to Salvation
In my most desperate time of need--when my body has proven incompetent and my mind infiltrated with energy-erasing, sleep-interfering and cognitively-catastrophic drugs--I rest assured that salvation is only 400 days away. Maybe. The United States of America, land of my birth and the place where I've worked, volunteered and been a good citizens; may save me then -- in 400 days or so. I've already waited about 300 days; so what's another 400?
If I should find myself on the street, says my attorney, he can make an appeal for my social security benefits to be considered more quickly. Although, the two year waiting period for a disabled person to receive Medicare still applies. So, let's add it up--300 days plus 400 days is 700 days. That's a grand total of two years.
Two years may seem like a short time for a working, healthy person. But, for me, it's forever. I could be dead in two years. Who knows? Two years of financial distress is what this means. Two years of not having my much-needed massages paid for because that's apparently a luxury. A second year of having to pay that $5000 deductible. Another year of being terrified that I'm one pink slip away from excruciating pain and complete debilitation if I lose my access to medical care. More time thinking about the financial stress my disability is causing my family.
If I lived in the third world, this news may not be shocking. But, I live in the US. I've worked in the US. I've employed people in the US. I've paid business taxes in the US. Who would ever care. As a prisoner, my human rights would be recognized and the medical bills would be paid. As someone on the outside, I'm toast.
Thanks to my husband, I'm not currently on the street. Without him, I might be. It's a ridiculous paradox that one of the richest countries in the world will only help its citizens who are prisoners or, maybe, homeless. Although those are not mutually exclusive today, as I believe homelessness is a crime in my city. I'll have to check into that? Homeless=criminal=health care?
If I should find myself on the street, says my attorney, he can make an appeal for my social security benefits to be considered more quickly. Although, the two year waiting period for a disabled person to receive Medicare still applies. So, let's add it up--300 days plus 400 days is 700 days. That's a grand total of two years.
Two years may seem like a short time for a working, healthy person. But, for me, it's forever. I could be dead in two years. Who knows? Two years of financial distress is what this means. Two years of not having my much-needed massages paid for because that's apparently a luxury. A second year of having to pay that $5000 deductible. Another year of being terrified that I'm one pink slip away from excruciating pain and complete debilitation if I lose my access to medical care. More time thinking about the financial stress my disability is causing my family.
If I lived in the third world, this news may not be shocking. But, I live in the US. I've worked in the US. I've employed people in the US. I've paid business taxes in the US. Who would ever care. As a prisoner, my human rights would be recognized and the medical bills would be paid. As someone on the outside, I'm toast.
Thanks to my husband, I'm not currently on the street. Without him, I might be. It's a ridiculous paradox that one of the richest countries in the world will only help its citizens who are prisoners or, maybe, homeless. Although those are not mutually exclusive today, as I believe homelessness is a crime in my city. I'll have to check into that? Homeless=criminal=health care?
Friday, September 11, 2009
The Awakened Piranha
I envision them as small and red with razor sharp teeth; evil in spirit. In my mind's eye they travel through my body scheming, planning their attack, initiating, chewing angrily. They are my metaphorical piranha. At any given time they can be awakened. In the morning. In the evening. Upon my own awakening. Their work feels like you would imagine piranha might feel if unleashed to eat you alive from the inside. The piranha sensation is only one of the many symptoms that terrorize me on a daily basis -- all part of a nasty disease called Psoriatic Arthritis.
In the many articles I've read about this disease, I see Psoriatic Arthritis abbreviated PsA. So common and matter-of-fact as to already have a widely used acronym. It haunted me for years, unchecked and anonymous. I found it only this year. Like a drone fighter plane, it stalked me since the Fall of 1999 and deconstructed my physical body; my ability to work; my life. I would have fought earlier but it took me 10 years to get a handle on its position and strategy and to be officially introduced. Now I know and the combat has begun. That whole story in another blog...
Now, about these piranha. Today, they have decided to meet in my big left toe. Together, they must be chewing and chomping; maybe releasing some kind of toxin. If I were blind and describing to someone the state of my toe it would go something like this: it is swollen so tight the skin might split open soon; it is red; it is visibly throbbing; there may be a serious fracture.
But, I can see it; and, from the looks of the toe I'm imagining things. Piranha, some might think, is an exaggeration. How can something hurt so bad without being bloody, swollen, having a bone sticking out? Ahhh. That is the sad truth about this disease. You look fine. How can it hurt? How can you be sick? Questions others have asked me and ones I've asked myself, many times.
When not in my toe the piranha travel freely through my physical body. Sometimes they cycle through every joint in my body, stopping only for a second or two. I can visualize the cycle in my minds-eye, like a diagram from sixth grade science class. The shoulder, the finger, the toe, the knee, the hip, the ribs, the chest -- everywhere. They roam, they play, they plunder, they bite! Other days, like today, the piranha just land somewhere and have party - chewing and chomping at one joint; slowly eating it away, leaving me to wonder what will be left when they move on in a hour, a day, or even a year.
Yes, a year. My right index finger is proof of that reality. Now, a splint works silently to fix the damage they did there. The finger is twisted and bent now, after the year-long party it hosted. To others who experience the piranha, I am sorry to you. Tell me your name for this enemy and your remedies. To win this war we must work together.
In the many articles I've read about this disease, I see Psoriatic Arthritis abbreviated PsA. So common and matter-of-fact as to already have a widely used acronym. It haunted me for years, unchecked and anonymous. I found it only this year. Like a drone fighter plane, it stalked me since the Fall of 1999 and deconstructed my physical body; my ability to work; my life. I would have fought earlier but it took me 10 years to get a handle on its position and strategy and to be officially introduced. Now I know and the combat has begun. That whole story in another blog...
Now, about these piranha. Today, they have decided to meet in my big left toe. Together, they must be chewing and chomping; maybe releasing some kind of toxin. If I were blind and describing to someone the state of my toe it would go something like this: it is swollen so tight the skin might split open soon; it is red; it is visibly throbbing; there may be a serious fracture.
But, I can see it; and, from the looks of the toe I'm imagining things. Piranha, some might think, is an exaggeration. How can something hurt so bad without being bloody, swollen, having a bone sticking out? Ahhh. That is the sad truth about this disease. You look fine. How can it hurt? How can you be sick? Questions others have asked me and ones I've asked myself, many times.
When not in my toe the piranha travel freely through my physical body. Sometimes they cycle through every joint in my body, stopping only for a second or two. I can visualize the cycle in my minds-eye, like a diagram from sixth grade science class. The shoulder, the finger, the toe, the knee, the hip, the ribs, the chest -- everywhere. They roam, they play, they plunder, they bite! Other days, like today, the piranha just land somewhere and have party - chewing and chomping at one joint; slowly eating it away, leaving me to wonder what will be left when they move on in a hour, a day, or even a year.
Yes, a year. My right index finger is proof of that reality. Now, a splint works silently to fix the damage they did there. The finger is twisted and bent now, after the year-long party it hosted. To others who experience the piranha, I am sorry to you. Tell me your name for this enemy and your remedies. To win this war we must work together.
Thursday, September 10, 2009
Footrock
Stepping out of bed onto rocks was the first sign of trouble in the bottom of my feet. There weren't really rocks on the floor, but it sure felt like it. It was the small joints in the bottom of my feet that felt like sharp rocks whenever I stepped down. The first time it happened I almost fell over.
I stepped out of bed and went forward with fast tip-toe walking until I found a wall to brace myself. Overnight, both feet had become so inflamed, it was difficult to walk. Unsure what to think, I hit the search engines. Metatarsalgia.
The MRI of my right foot has shown the inflammation there. There's no doubt that the steroid shots help relieve the pain at times. Metatarsalgia. What a thrill. Another manifestation of my psoriatic arthritis. Mystery solved. Check mark.
I stepped out of bed and went forward with fast tip-toe walking until I found a wall to brace myself. Overnight, both feet had become so inflamed, it was difficult to walk. Unsure what to think, I hit the search engines. Metatarsalgia.
The MRI of my right foot has shown the inflammation there. There's no doubt that the steroid shots help relieve the pain at times. Metatarsalgia. What a thrill. Another manifestation of my psoriatic arthritis. Mystery solved. Check mark.
Lumping it all Together
While listening to her words, things began to move in slow motion. The air was thicker and my heart slowed down, then slowly sank into my stomach. Again, I will go down the cancer road. I walked it earlier this year and now it is calling me again. The lesion, said my doctor, had not grown. That was good - it's big enough. But now, I have a new one growing. This is number three this year.
My doctor didn't like my suspicious thyroid lesion; so I gave it up in surgery. Then, the large one hiding near my ovary passed the needle test. Now, another. Plus a cyst on my other ovary. The radiologist labeled it "complex." That's an understatement.
So, all my doctors sound worried. My arthritis is not improving with steroids, anti-inflammatories, Methotrexate or Humira--so maybe there's something else going on. Could I have cancer? What a notion. You know I've been online searching since yesterday, looking for symptoms to see if cancer makes sense. No surprise that I have all the symptoms of ovarian cancer; and have had them for two years.
Now the worst part is yet to come. The part I loathe. After a year of waiting; I wait yet again. I wait for an answer to my blood test. Wait for the doctor to refer me to a surgeon. Wait for the surgeon to say that we should probably open it up and take it all out. They can have it; just hurry.
Bibliography
http://www.emedicinehealth.com/lymphoma/article_em.htm
http://www.ovariancancercenter.org/basics/symptoms.cfm
http://www.humira.com/PsoriaticArthritis/Default.aspx
http://ovariancystfacts.com/complex-ovarian-cysts/
http://www.medicinenet.com/methotrexate/article.htm
My doctor didn't like my suspicious thyroid lesion; so I gave it up in surgery. Then, the large one hiding near my ovary passed the needle test. Now, another. Plus a cyst on my other ovary. The radiologist labeled it "complex." That's an understatement.
So, all my doctors sound worried. My arthritis is not improving with steroids, anti-inflammatories, Methotrexate or Humira--so maybe there's something else going on. Could I have cancer? What a notion. You know I've been online searching since yesterday, looking for symptoms to see if cancer makes sense. No surprise that I have all the symptoms of ovarian cancer; and have had them for two years.
Now the worst part is yet to come. The part I loathe. After a year of waiting; I wait yet again. I wait for an answer to my blood test. Wait for the doctor to refer me to a surgeon. Wait for the surgeon to say that we should probably open it up and take it all out. They can have it; just hurry.
Bibliography
http://www.emedicinehealth.com/lymphoma/article_em.htm
http://www.ovariancancercenter.org/basics/symptoms.cfm
http://www.humira.com/PsoriaticArthritis/Default.aspx
http://ovariancystfacts.com/complex-ovarian-cysts/
http://www.medicinenet.com/methotrexate/article.htm
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