Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.
I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly.
Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Monday, November 9, 2015
Monday, November 2, 2015
Swimming along
With all my physical ailments, numerous well intentioned people have suggested swimming and water aerobics for me. My response is 'um, no'. I don't like swimming. In fact I hate swimming. I hate swimming laps to be specific.
I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)
We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.
At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.
At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.
To this day, I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.
I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.
I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)
We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.
At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.
At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.
To this day, I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.
I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.
Friday, March 27, 2015
Treating Chronic Pain with Exercise
It seems a bit contradictory but exercise helps relieve chronic pain. Its one thing if you have an injury that needs to heal but then they send you to physical therapy to regain range of motion and start movement. It may be include some ouching but it means it is helping as well.
I have fibromyalgia and RA (in case you haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).
Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.
Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.
However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:
"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.
If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."
This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.
I have fibromyalgia and RA (in case you haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).
Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.
Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.
However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:
"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.
If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."
This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.
Saturday, March 14, 2015
Fibromyalgia foibles
I have been taking my time to deal with fibromyalgia as it is somewhat complicated. Its not easily understood by most people - as it can have many differing symptoms - all of which have one thing in common: PAIN.
My husband knows that he doesn't understand fibromyalgia either and he wants to. He signed us up for a community education course at a local school on fibromyalgia. Originally only he was going but then it turned out both of us were going. I mean I should probably learn as much as possible about one of my many ailments. I know how to spell and pronounce it but there is obviously a lot more.
We went to the class. As expected it was basically a local practitioner shilling for clients. What was interesting is that she is a certified acupuncturist, Chinese herbalist and a practitioner in Western medicine so she combined both schools of treatment. She also could explain the fibro pain points to my husband so he understood more.
Some of her information was a little dated but she did offer some options and thoughts about differing triggers for fibromyalgia - such as major stress. I said how about a cancer diagnosis? She thought that was a possibility.... See, cancer is the gift that keeps on giving.
Coincidentally, I received an email from the National Pain Foundation for a survey on "Do fibromyalgia medications work?" Of course it included Lyrica and I completed it and signed up for their newsletter. I mean I should be in their fan club considering on how much time I spend in pain even though I am on so many medications.
The NPF is different than the American Pain Foundation which is different from the American Chronic Pain Foundation which even has a local support group. But then there is even the National Fibromyalgia Association.
But I still need to educate myself. My husband did learn a lot at class. But still I have to deal with my fibro... and the fibro fog that comes with the pain.
My husband knows that he doesn't understand fibromyalgia either and he wants to. He signed us up for a community education course at a local school on fibromyalgia. Originally only he was going but then it turned out both of us were going. I mean I should probably learn as much as possible about one of my many ailments. I know how to spell and pronounce it but there is obviously a lot more.
We went to the class. As expected it was basically a local practitioner shilling for clients. What was interesting is that she is a certified acupuncturist, Chinese herbalist and a practitioner in Western medicine so she combined both schools of treatment. She also could explain the fibro pain points to my husband so he understood more.
Some of her information was a little dated but she did offer some options and thoughts about differing triggers for fibromyalgia - such as major stress. I said how about a cancer diagnosis? She thought that was a possibility.... See, cancer is the gift that keeps on giving.
Coincidentally, I received an email from the National Pain Foundation for a survey on "Do fibromyalgia medications work?" Of course it included Lyrica and I completed it and signed up for their newsletter. I mean I should be in their fan club considering on how much time I spend in pain even though I am on so many medications.
The NPF is different than the American Pain Foundation which is different from the American Chronic Pain Foundation which even has a local support group. But then there is even the National Fibromyalgia Association.
But I still need to educate myself. My husband did learn a lot at class. But still I have to deal with my fibro... and the fibro fog that comes with the pain.
Wednesday, January 28, 2015
The placard question
I have had a somewhat long term debate with myself of whether I should get a handicapped parking placard. Some days finding a parking place and having to walk long ways - with full grocery carts, etc - get very tiresome and painful. RA and fibromyalgia can be a nasty combination. When one isn't hurting the other is.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Monday, January 19, 2015
A brief list of fibromylagia symptoms
[Note I did not write this list. It was on Facebook shared by Creaky Joints. But I find it to be very true.]
I have highlighted the ones that I experience regularly. So if you ever wonder how my day is going, just think about this list.
- PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.
- FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.
- SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns " feels like I haven't slept."
- PARESTHESIA- numbness or tingling. ( non dermatomal)
- DEPRESSION- most often reactive as with chronic pain condition.
- ANXIETY- may include panic attacks.
- PERSONALITY CHANGES- usually a worsening of a previous tendency.
- MOOD SWINGS
- SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.
- HEADACHES- tension and or migraine.
- COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short term memory loss.
- FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.
- DYSTONIA- stiff muscles due to involuntary contracture. Difficulty in moving tongue to speak.
- FREQUENTLY SAYING WRONG WORDS
- BURNING SENSATIONS
- LIGHT HEADEDNESS - "Fibro Fog", spaced out, cloudy.
- MORNING STIFFNESS
- EASY BRUISING
- MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.
- NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes the symptoms and signs of Dermatographia.
- DISEQUILIBRIUM- Vertigo
- MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.
- SCIATICA- like pain
- PHOTOPHOBIA- Intolerance of bright lights.
- ALTERATION OF TASTE, SMELL and HEARING.
- LOW FREQUENCY, SENSORINEURAL HEARING LOSS.
- DECREASED PAINFUL SOUND THRESHOLD.
- TINNITUS- ringing in the ears.
- OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movement of the eye ball.
- CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle used for focus as well as skeletal muscles for tracking.
- INTOLERANCE OF ALCOHOL
- ENHANCEMENT OF MEDICATION SIDE EFFECTS
- INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS
- WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants
- RESTLESS LEGS
- HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)
- POSSIBLE CARBOHYDRATE INTOLERANCE
- SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)
- HEARTBURN- secondary to I.B.S.
- SUB-NORMAL TEMPERATURE
- NIGHT SWEATS.
- SENSITIVE TO TEMPERATURE EXTREMES
- BREATHING DIFFICULTIES
- HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic in FM than normal.
- IMPOTENCE- reactive and occasionally.
- SEVERE PREMENSTRUAL SYNDROME
- FREQUENT VAGINAL YEAST INFECTIONS.
- MUSCLE SPASM- twitching.
- NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.
- PELVIC PAIN.
- ABDOMINAL WALL PAIN.
- DRY EYES AND MOUTH.
- TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.
- RAYNAUD'S- like symptoms.
- CARPAL TUNNEL SYNDROME-possible related condition.
- HAIR LOSS-secondary to psychological stress from FM.
- VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.
- PLANTAR ARCH-or heel pain. Exacerbated in FM.
This list of symptoms has been correlated by the Arthritis Foundation S.A.
So I have just a few, well some, maybe several. What the hell, I have a whole bunch. I will not highlight my 'favorites'. We will just say, they all suck.
Things with a cure
The CDC recently warned of these new germs that are resistant to treatment - the superbugs as they are called. They are out there and killing more and more of us as they resist most treatments. While the pictures of them are pretty cool, the germs themselves are not.
There are other ailments with out a cure. I have a few:
Fibromyalgia
Rheumatoid
Degenerating disks
There are lots of others that I don't have for which I am grateful.
They have treatments to ease the symptoms but not cures. Medical research is needed for these nasty germs and the incurable ailments.
Perhaps I am feeling a little down this morning because when I got out of bed everything hurt. So I am going with plan B - stay in bed until the pain meds kick in. The cat is hanging out with me and the TV is on in the background so I am as comfy as I can get.
But if you don't have these you don't understand. Today I feel like crap. I have plans and will do my best to get through them. But the problem is I know that every day can be like this for the rest of my life. Its pretty damn depressing.
I may sneer at medical studies (because we always need more research) but we really do need the research. There are lots of ailments that do not have cures. And we have these new treatment resistant germs that pop up and kill people. Never mind the bird flus and all the other new ailments.
I think I need a vacation. Oh that's right I am on vacation.... Off to have fun and not be depressing....
Fibromyalgia
Rheumatoid
Degenerating disks
There are lots of others that I don't have for which I am grateful.
They have treatments to ease the symptoms but not cures. Medical research is needed for these nasty germs and the incurable ailments.
Perhaps I am feeling a little down this morning because when I got out of bed everything hurt. So I am going with plan B - stay in bed until the pain meds kick in. The cat is hanging out with me and the TV is on in the background so I am as comfy as I can get.
But if you don't have these you don't understand. Today I feel like crap. I have plans and will do my best to get through them. But the problem is I know that every day can be like this for the rest of my life. Its pretty damn depressing.
I may sneer at medical studies (because we always need more research) but we really do need the research. There are lots of ailments that do not have cures. And we have these new treatment resistant germs that pop up and kill people. Never mind the bird flus and all the other new ailments.
I think I need a vacation. Oh that's right I am on vacation.... Off to have fun and not be depressing....
Sunday, January 18, 2015
Treating Chronic Pain with Exercise
It seems a bit contradictory but exercise helps relieve chronic pain. Its one thing if you have an injury that needs to heal but then they send you to physical therapy to regain range of motion and start movement. It may be include some ouching but it means it is helping as well.
I have fibromyalgia and RA (in case you haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).
Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.
Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.
However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:
"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.
If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."
This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.
I have fibromyalgia and RA (in case you haven't figured it out yet) and I go to the gym three times a week. I am one of the 40% or so (or whatever that low number is) of Americans who get the recommended amount of exercise weekly. At the gym, I do 45-60 minutes of cardio followed by strengthening exercises and weights (yup, I can lift the giant 1 lb weights with ease).
Some days are a little harder than others. Yesterday the muscle on the top of my right thigh was very unhappy with some of what I was doing and my left hip told me how I could not do some exercises. But I did finish 95% of my workout which is just fine.
Exercise does make me feel better. Some of my doctors are impressed with the range of motion I have in my shoulders and hips because of my ailments. Exercise and stretching has allowed me to retain this. It has been suggested I try swimming. But since I hate swimming laps, that has not happened.
However there are always overachievers. I am not an overachiever regarding exercise these days. Katie Pumphrey is an overachiever. She swims to help with her fibromyalgia. But if that wasn't enough, she is training to swim the English Channel. No I am not kidding. The English Channel is not what we call an easy swim. To put it in context:
"Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.
If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours."
This will be a feat for the record books as far as I am concerned. So to the non-exercisers out there, I just say aim high and start moving. For those with pain, remember every journey starts with a single step.
Thursday, January 15, 2015
The placard question
I have had a somewhat long term debate with myself of whether I should get a handicapped parking placard. Some days finding a parking place and having to walk long ways - with full grocery carts, etc - get very tiresome and painful. RA and fibromyalgia can be a nasty combination. When one isn't hurting the other is.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Wednesday, January 14, 2015
Fibromyalgia foibles
I have been taking my time to deal with fibromyalgia as it is somewhat complicated. Its not easily understood by most people - as it can have many differing symptoms - all of which have one thing in common: PAIN.
My husband knows that he doesn't understand fibromyalgia either and he wants to. He signed us up for a community education course at a local school on fibromyalgia. Originally only he was going but then it turned out both of us were going. I mean I should probably learn as much as possible about one of my many ailments. I know how to spell and pronounce it but there is obviously a lot more.
We went to the class. As expected it was basically a local practitioner shilling for clients. What was interesting is that she is a certified acupuncturist, Chinese herbalist and a practitioner in Western medicine so she combined both schools of treatment. She also could explain the fibro pain points to my husband so he understood more.
Some of her information was a little dated but she did offer some options and thoughts about differing triggers for fibromyalgia - such as major stress. I said how about a cancer diagnosis? She thought that was a possibility.... See, cancer is the gift that keeps on giving.
Coincidentally, I received an email from the National Pain Foundation for a survey on "Do fibromyalgia medications work?" Of course it included Lyrica and I completed it and signed up for their newsletter. I mean I should be in their fan club considering on how much time I spend in pain even though I am on so many medications.
The NPF is different than the American Pain Foundation which is different from the American Chronic Pain Foundation which even has a local support group. But then there is even the National Fibromyalgia Association.
But I still need to educate myself. My husband did learn a lot at class. But still I have to deal with my fibro... and the fibro fog that comes with the pain.
My husband knows that he doesn't understand fibromyalgia either and he wants to. He signed us up for a community education course at a local school on fibromyalgia. Originally only he was going but then it turned out both of us were going. I mean I should probably learn as much as possible about one of my many ailments. I know how to spell and pronounce it but there is obviously a lot more.
We went to the class. As expected it was basically a local practitioner shilling for clients. What was interesting is that she is a certified acupuncturist, Chinese herbalist and a practitioner in Western medicine so she combined both schools of treatment. She also could explain the fibro pain points to my husband so he understood more.
Some of her information was a little dated but she did offer some options and thoughts about differing triggers for fibromyalgia - such as major stress. I said how about a cancer diagnosis? She thought that was a possibility.... See, cancer is the gift that keeps on giving.
Coincidentally, I received an email from the National Pain Foundation for a survey on "Do fibromyalgia medications work?" Of course it included Lyrica and I completed it and signed up for their newsletter. I mean I should be in their fan club considering on how much time I spend in pain even though I am on so many medications.
The NPF is different than the American Pain Foundation which is different from the American Chronic Pain Foundation which even has a local support group. But then there is even the National Fibromyalgia Association.
But I still need to educate myself. My husband did learn a lot at class. But still I have to deal with my fibro... and the fibro fog that comes with the pain.
Friday, January 9, 2015
Its Not a Contest
Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.
I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly.
Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.
I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly.
Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.
Thursday, January 8, 2015
Fibromyalgia and pain
These days my fibromyalgia has been better under control. I can also often tell the difference between fibro pain, RA pain, and I stubbed my toe pain. This is thanks to Lyrica with its weight gain side effect (and ice cream after dinner last night).
However, this is not always the case. Fibro has this lovely habit of, for absolutely no reason whatsoever - or maybe I breathed, all of a sudden I am experiencing bone deep pain in my body.
Yesterday I was at the dentist getting my teeth cleaned and all of a sudden I experienced pain down the right side of my back - probably a solid 9 on that stupid scale. It went from my collar bone down to my waist - an excruciating, teeth grinding pain that lasted about 30 seconds.The hygienist became concerned with my facial expression. She stopped working and asked if there was anything she could do - glass of water, sit up the chair, etc. I thanked her and said no. Her reply was 'its just letting you know its still there?' My reply was yes.
That is what fibromyalgia does, among other things. Sometimes it flares up like that in a body part - usually my back or leg or arm - sometimes at a joint and sometimes not. And there is absolutely nothing anyone can do. Unless someone invents the miracle drug that will relieve a 30 second bout of pain anytime soon.
But it is better than before which is a good thing.
However, this is not always the case. Fibro has this lovely habit of, for absolutely no reason whatsoever - or maybe I breathed, all of a sudden I am experiencing bone deep pain in my body.
Yesterday I was at the dentist getting my teeth cleaned and all of a sudden I experienced pain down the right side of my back - probably a solid 9 on that stupid scale. It went from my collar bone down to my waist - an excruciating, teeth grinding pain that lasted about 30 seconds.The hygienist became concerned with my facial expression. She stopped working and asked if there was anything she could do - glass of water, sit up the chair, etc. I thanked her and said no. Her reply was 'its just letting you know its still there?' My reply was yes.
That is what fibromyalgia does, among other things. Sometimes it flares up like that in a body part - usually my back or leg or arm - sometimes at a joint and sometimes not. And there is absolutely nothing anyone can do. Unless someone invents the miracle drug that will relieve a 30 second bout of pain anytime soon.
But it is better than before which is a good thing.
Saturday, January 3, 2015
What RA does
As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.
To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.
I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.
I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.
Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.
Over the year, I have learned all sorts of fun things about RA and how it affects the body:
What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.
In the meantime, as life gives me lemons I keep on working on that lemonade.
To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.
I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.
I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.
Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.
Over the year, I have learned all sorts of fun things about RA and how it affects the body:
- This is how RA affects the rest of your body
- It can also cause hoarseness and other laryngeal symptoms.
- RA can have a significant impact on work and relationships.
- Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
- My favorite is how RA affects both your hands and feet.
What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.
In the meantime, as life gives me lemons I keep on working on that lemonade.
Friday, January 2, 2015
Swimming along
With all my physical ailments, numerous well intentioned people have suggested swimming and water aerobics for me. My response is 'um, no'. I don't like swimming. In fact I hate swimming. I hate swimming laps to be specific.
I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)
We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.
At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.
At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.
To this day, I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.
I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.
I think this goes back to my childhood (as all strong feelings do). I grew up in a neighborhood with a community swimming pool. Once you passed the swimming test (2 laps, tread water for one minute I think) and were over the ripe old age of 8 or so, you could go to the pool unsupervised by parents all day. (This was the 1960s where children went outside all day long without a leash.)
We would ride our bikes (past the big bad scary dog who would chase us) every day the sun shined to swim and hangout at the pool all day long. We played Marco Polo, dared each other to go down the slide head first, learned water ballet, and generally had fun. We would leave after the ice cream truck came around 3pm and ride our bikes home.
At some point, we were all encouraged to join the swim team. They were encouraging us to channel our energy into lap swimming. We started to swim laps every day, over and over again. The thrill of the pool quickly turned into the boredom of lap swimming. We were then too old to play Marco Polo all day and had all gone down the slide headfirst on our backs. And they made us swim laps.
At summer camp, I even passed junior lifesaving. I learned more water ballet. But they didn't make us swim laps.
To this day, I don't like swimming laps. I am not a water aerobics person. That would mean being there at a specific time which I can never do because my schedule varies so much.
I do like floating around a nice warm lake or ocean with a little float. I can swim if I want to but rarely feel the urge. And now there is a new study that says it doesn't matter for fibromyalgia if you do land or water based activities. I can just apply that to all my other ailments and can happily avoid swimming laps.
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