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 ailments. Show all posts
Showing posts with label ailments. Show all posts
Monday, November 9, 2015
Monday, September 28, 2015
One of my other ailments
No today's post is not about my cancers. It is about one of my other ailments - rheumatoid arthritis. This is the ailment that makes my hands and feet hurt and getting out of bed in the morning a bit difficult. As opposed to rheumatoid which makes my whole back hurt or my degenerating disks which resemble an ice pick in my spine when its cranky or my left hip bursitis which also can remember an ice pick. (And I am on all the good drugs.)
The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.
However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.
I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).
So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!
The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.
However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.
I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).
So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!
Saturday, September 12, 2015
Up before the birds
This morning I got up at the perky cheerful hour of 430am. And it was intentional. Why you say? Because I had an MRI of my elbow.
I always take the weird time MRIs. MRI machines need to run continuously because it takes too long to shut them down and bring them back up again. There are always appointments available in the middle of the night or on holidays. I once had an MRI on Easter Sunday. Easter isn't a big deal for us so I didn't mind.
I digress. This morning I was up before the birds. It was dark and quiet when I went out my door. The sun was just beginning to come up but I didn't get to see the sunrise. It was dark when I got there with just a hint of the coming day.
So anyway, I bet you are dying to hear about my elbow. This is the same elbow that had tennis elbow a couple years ago that came back again. I wear a splint often on my right hand because of the tennis elbow and arthritis. Recently I discovered I had a bunch of cysts on my elbow. My PCP and rheumatologist said to keep a eye on them and let them know if they get bigger or hurt.
Of course they got bigger and hurt, especially when they get squished. Note to self, don't squish the whatevertheyares or they hurt for hours. But we don't know what they are. They could be cysts. They could be rheumatoid nodules as a side effect of my methotrexate. But cysts and nodules don't hurt when squished.
So the mystery looms. I had an x-ray earlier this week and had the MRI this morning. We should know results next week. This may mean changing my RA treatment... But if you have had breasts cancer you can't have a lot of the newer biologics. So the fun continues.
Now I might need to go to bed early to make up for getting up so early.
My husband thinks I should get to name my new ailment because its probably something weird. And with everything I have I should get to name something after me...
I always take the weird time MRIs. MRI machines need to run continuously because it takes too long to shut them down and bring them back up again. There are always appointments available in the middle of the night or on holidays. I once had an MRI on Easter Sunday. Easter isn't a big deal for us so I didn't mind.
I digress. This morning I was up before the birds. It was dark and quiet when I went out my door. The sun was just beginning to come up but I didn't get to see the sunrise. It was dark when I got there with just a hint of the coming day.
So anyway, I bet you are dying to hear about my elbow. This is the same elbow that had tennis elbow a couple years ago that came back again. I wear a splint often on my right hand because of the tennis elbow and arthritis. Recently I discovered I had a bunch of cysts on my elbow. My PCP and rheumatologist said to keep a eye on them and let them know if they get bigger or hurt.
Of course they got bigger and hurt, especially when they get squished. Note to self, don't squish the whatevertheyares or they hurt for hours. But we don't know what they are. They could be cysts. They could be rheumatoid nodules as a side effect of my methotrexate. But cysts and nodules don't hurt when squished.
So the mystery looms. I had an x-ray earlier this week and had the MRI this morning. We should know results next week. This may mean changing my RA treatment... But if you have had breasts cancer you can't have a lot of the newer biologics. So the fun continues.
Now I might need to go to bed early to make up for getting up so early.
My husband thinks I should get to name my new ailment because its probably something weird. And with everything I have I should get to name something after me...
Wednesday, August 19, 2015
Insurer bias - or why insure (expensive) sick people?
One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.
Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.
For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.
I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.
Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.
Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.
And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.
To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.
Each year you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?
I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.
Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.
For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.
I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.
Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.
Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.
And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.
To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.
Each year you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?
I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.
Monday, August 3, 2015
Unwanted interrogations
I really despise this. You reveal an ailment and get an interrogation in return. It doesn't matter how well you know the person, you just want to shut them up.
Recently, when asked about my wrist brace, I said my usual 'its a combination of tendinitis, tennis elbow, RA and more'.
These questions ensued:
Have you had a cortisone injection? Yes, two.
Do you take anti-inflammatories? Yes
Do go to PT? No but I go to a gym which is run by physical therapists.
Do you take vitamin B6? Yes to shut them up (and then I went home and checked my vitamin bottle).
Do you meditate? No but I knit and crochet and it has been shown to have the same effect.
Have you tried acupuncture? Yes (but not in the past year or so - something I didn't share).
I am so glad I didn't mention any other ailments.... The questions might never have stopped.
Do I know you? No. Is it any of your business? No. Do you mind shutting up now?
Recently, when asked about my wrist brace, I said my usual 'its a combination of tendinitis, tennis elbow, RA and more'.
These questions ensued:
Have you had a cortisone injection? Yes, two.
Do you take anti-inflammatories? Yes
Do go to PT? No but I go to a gym which is run by physical therapists.
Do you take vitamin B6? Yes to shut them up (and then I went home and checked my vitamin bottle).
Do you meditate? No but I knit and crochet and it has been shown to have the same effect.
Have you tried acupuncture? Yes (but not in the past year or so - something I didn't share).
I am so glad I didn't mention any other ailments.... The questions might never have stopped.
Do I know you? No. Is it any of your business? No. Do you mind shutting up now?
Wednesday, June 17, 2015
Surprising people
As I have mentioned before, I go to an amazing gym for dilapidated people. Its a combination of PT and a gym and is full of people with ailments. I see people there daily in wheel chairs, on oxygen, and wearing various types of splints and braces. I know most of the people who go there have medical issues and greatly benefit from the additional support, like me.
When you first join, you get assessed by one of the physical therapists - which consist of three of the four owners - and then work with either one of the exercise specialists or one of the PTs to set up an exercise plan. Then every three months you go back to one of the PTs or an exercise specialist to reevaluate your program.
I went to one of the PTs three plus years ago when I joined. Since then, my health has increased its downward spiral and I decided I needed to go back to one of the PTs and start over. I met with one of the two brothers yesterday to do that.
We started by going through which of my body parts have issues and my medical issues which impact my abilities. At the end of the conversation, he turned to me and said "I had no idea you had so much going on. I see you here going through your routine and did not know".
I had surprised him with my ailments and that I am still exercising. At one point, he did say "I'm sorry" and I said "no you are not supposed to say 'I'm sorry'. You aresupposed to say 'That sucks.'"
But I am a little sore after my new routine but I will be back tomorrow.
When you first join, you get assessed by one of the physical therapists - which consist of three of the four owners - and then work with either one of the exercise specialists or one of the PTs to set up an exercise plan. Then every three months you go back to one of the PTs or an exercise specialist to reevaluate your program.
I went to one of the PTs three plus years ago when I joined. Since then, my health has increased its downward spiral and I decided I needed to go back to one of the PTs and start over. I met with one of the two brothers yesterday to do that.
We started by going through which of my body parts have issues and my medical issues which impact my abilities. At the end of the conversation, he turned to me and said "I had no idea you had so much going on. I see you here going through your routine and did not know".
I had surprised him with my ailments and that I am still exercising. At one point, he did say "I'm sorry" and I said "no you are not supposed to say 'I'm sorry'. You aresupposed to say 'That sucks.'"
But I am a little sore after my new routine but I will be back tomorrow.
Wednesday, May 13, 2015
Only perfect people need apply
It is a known fact that clinical trials are very selective when creating their selection criteria for who to include. (That is not a grammatical sentence but its early in the day here.) What I am trying to say is that if you do not fit their criteria, you will not be included. I have so many ailments, I have never been included in a clinical trial. They don't want me.
Hop on over the clinicaltrials.gov and see if you would fit their criteria for any. They are very specific. Basically they are trying to determine toxicity, dosage and more. An abbreviated version of the official government description of the different stages are:
"Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or diagnostic goals (for example, screening studies, microdose studies).
Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety.
Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition).
Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.
Phase 4: Studies occurring after FDA has approved a drug for marketing. These including postmarket requirement and commitment studies that are required of or agreed to by the sponsor."
In Phase 2 and 3 trials, the most common ones we hear about and participate in, are where the drug manufacturers select their groups of patients who have the disease that they hope to treat. But they routinely exclude people with other issues who might not conflict with the trials or cause side effects that could be from the new drug or from the other issues. So you have to be perfect.
A growing problem is that with the aging population as the Boomer generation about to hit their 70s, older patients are being treated with new drugs that have not been tested on their age group.
"For at least 25 years, it’s been known that drugs that work one way in an otherwise healthy younger adult might not work the same way in the elderly. Many older adults are frail and might metabolize medications more slowly or suffer unforeseen drug interactions. Blood thinners, for example, might be riskier in someone with a tendency to fall. Medications to control blood pressure could be harder to dose appropriately in a patient with poor kidney function. In 1989, the FDA set guidelines encouraging drug companies to study how their drugs affect the elderly, with the goal that the population being studied prior to drug approval should resemble the population that would ultimately take the medications. But the guideline was not a mandate...."
"...one in five trials excluded potential participants based on their age alone. In half of the remaining trials, patients were excluded from participating because of conditions that disproportionately affect older adults, such as cognitive dysfunction or limited physical activity. And only one quarter of the studies looked at outcomes that might be relevant to older adults, such as quality of life or physical function."
So for all of us imperfect people out there, you can understand the issues here with multiple health issues, never mind age, which may cause us additional problems through treatment.
Hop on over the clinicaltrials.gov and see if you would fit their criteria for any. They are very specific. Basically they are trying to determine toxicity, dosage and more. An abbreviated version of the official government description of the different stages are:
"Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or diagnostic goals (for example, screening studies, microdose studies).
Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety.
Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition).
Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs.
Phase 4: Studies occurring after FDA has approved a drug for marketing. These including postmarket requirement and commitment studies that are required of or agreed to by the sponsor."
In Phase 2 and 3 trials, the most common ones we hear about and participate in, are where the drug manufacturers select their groups of patients who have the disease that they hope to treat. But they routinely exclude people with other issues who might not conflict with the trials or cause side effects that could be from the new drug or from the other issues. So you have to be perfect.
A growing problem is that with the aging population as the Boomer generation about to hit their 70s, older patients are being treated with new drugs that have not been tested on their age group.
"For at least 25 years, it’s been known that drugs that work one way in an otherwise healthy younger adult might not work the same way in the elderly. Many older adults are frail and might metabolize medications more slowly or suffer unforeseen drug interactions. Blood thinners, for example, might be riskier in someone with a tendency to fall. Medications to control blood pressure could be harder to dose appropriately in a patient with poor kidney function. In 1989, the FDA set guidelines encouraging drug companies to study how their drugs affect the elderly, with the goal that the population being studied prior to drug approval should resemble the population that would ultimately take the medications. But the guideline was not a mandate...."
"...one in five trials excluded potential participants based on their age alone. In half of the remaining trials, patients were excluded from participating because of conditions that disproportionately affect older adults, such as cognitive dysfunction or limited physical activity. And only one quarter of the studies looked at outcomes that might be relevant to older adults, such as quality of life or physical function."
So for all of us imperfect people out there, you can understand the issues here with multiple health issues, never mind age, which may cause us additional problems through treatment.
Thursday, April 16, 2015
Self-management
So what does self management mean to you? In terms of your health conditions, if any? Last fall I took part in a survey on this very subject. I don't recall the survey itself but I was sent an email telling me that I did so I guess its true.
It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.
The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.
Two take-aways for me are:
It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.
The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.
Two take-aways for me are:
- Self management hinges on being knowledgeable about your disease and being your own self advocate.
- It also involves not just the physical aspects of the disease but the mental aspects as a coping mechanism.
Thursday, April 2, 2015
Stupid stomach flu or how having ailments complicates everything.
I woke up at 430 this morning running to the bathroom in one of the inglorious sprints that have happened to all of us. Eventually I returned to bed and informed my husband I was going nowhere today. And the delicate cat wanted to sit on my stomach.
My husband was concerned but went out the door and I went back to sleep until 830 where I struggled mightily to be functional and eventually called work to inform them I would not be available today. My coworker who answered the phone recommended warm flat ginger ale. That sounded very good. I did try some ginger tea but it just wasn't the same. I normally try to live on the BRAT diet when not feeling well but the tea did not sit in my stomach and I tried a tiny nibble of a banana with the same result.
Between bathroom sprints I came up with two things I needed - warm flat ginger ale and something OTC that I could take to stop my sprints - that hadn't expired in 2008 or 2009 which is what we had in the bathroom. Between dashes, I was returning to bed in my pjs.
With that decision made, the next one was 'can I really go to Walgreen's in my PJs with a fleece over them'? I made the executive decision that I wasn't THAT sick and did manage clean clothes.
Its approximately 200 yards from my front door to Walgreen's. But I drove. I stumbled around the store looking for the digestive ailments aisle where there are two options - Immodium and Kaopectate. I tried reading the labels but there were all sorts of conflicting things on them
One said not to take without consulting a physician if you are on arthritis medications and the other said not to take if you have liver disease. I don't have liver disease but my liver numbers are closely supervised because of my other health ailments.
I went off to ask the pharmacist where I was told I can't take Kaopectate because it conflicts with my arthritis medication. And Imodium is not that good an idea because of liver issues that I can take it but the least dose possible.
One item down, I went to look for ginger ale. I checked the cold beverage section and it was full of Pepsi Cola products and Coca Cola products and a bunch of weird 'waters'. They didn't have any ginger ale. How can that be? I checked the shelves in the food and beverage section and none there either. I left astonished. Ginger ale is a healthful beverage for upset digestion systems.
Out in the parking lot, I thought where to next? The grocery store would have it but that was a whole mile and I really didn't think I want to deal with a big store. There is a smaller convenience store right up the road that might have it. If not, I was willing to bet that the liquor store had it for mixers.
The convenience store did have it. I grabbed three bottles and went to pay. $5.40 and I had no cash. The little sign said '$7.00 minimum on cards'. Crap. I thought about buying another but the owner had sympathy.
Home at last where I downed my child's portion of Imodium and opened my ginger ale to warm up and go flat during my next nap. After more naps, I am beginning to feel more human. The warm flat ginger ale seems to be staying in place.
I am exhausted. Why isn't my life ever easy?
My husband was concerned but went out the door and I went back to sleep until 830 where I struggled mightily to be functional and eventually called work to inform them I would not be available today. My coworker who answered the phone recommended warm flat ginger ale. That sounded very good. I did try some ginger tea but it just wasn't the same. I normally try to live on the BRAT diet when not feeling well but the tea did not sit in my stomach and I tried a tiny nibble of a banana with the same result.
Between bathroom sprints I came up with two things I needed - warm flat ginger ale and something OTC that I could take to stop my sprints - that hadn't expired in 2008 or 2009 which is what we had in the bathroom. Between dashes, I was returning to bed in my pjs.
With that decision made, the next one was 'can I really go to Walgreen's in my PJs with a fleece over them'? I made the executive decision that I wasn't THAT sick and did manage clean clothes.
Its approximately 200 yards from my front door to Walgreen's. But I drove. I stumbled around the store looking for the digestive ailments aisle where there are two options - Immodium and Kaopectate. I tried reading the labels but there were all sorts of conflicting things on them
One said not to take without consulting a physician if you are on arthritis medications and the other said not to take if you have liver disease. I don't have liver disease but my liver numbers are closely supervised because of my other health ailments.
I went off to ask the pharmacist where I was told I can't take Kaopectate because it conflicts with my arthritis medication. And Imodium is not that good an idea because of liver issues that I can take it but the least dose possible.
One item down, I went to look for ginger ale. I checked the cold beverage section and it was full of Pepsi Cola products and Coca Cola products and a bunch of weird 'waters'. They didn't have any ginger ale. How can that be? I checked the shelves in the food and beverage section and none there either. I left astonished. Ginger ale is a healthful beverage for upset digestion systems.
Out in the parking lot, I thought where to next? The grocery store would have it but that was a whole mile and I really didn't think I want to deal with a big store. There is a smaller convenience store right up the road that might have it. If not, I was willing to bet that the liquor store had it for mixers.
The convenience store did have it. I grabbed three bottles and went to pay. $5.40 and I had no cash. The little sign said '$7.00 minimum on cards'. Crap. I thought about buying another but the owner had sympathy.
Home at last where I downed my child's portion of Imodium and opened my ginger ale to warm up and go flat during my next nap. After more naps, I am beginning to feel more human. The warm flat ginger ale seems to be staying in place.
I am exhausted. Why isn't my life ever easy?
Saturday, March 28, 2015
Doctors and coping with multiple ailments
Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.
Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.
If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.
But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.
Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.
So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...
The eternal life of the patient and questions with all my ailments.
Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.
If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.
But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.
Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.
So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...
The eternal life of the patient and questions with all my ailments.
Wednesday, March 18, 2015
Am I supposed to be suffering?
I read stories all over the internet and in print about people who are suffering from, a victim of, or a survivor of some ailment I have. I do not consider myself to be suffering, a victim of, or a survivor of any damn thing. I am just living.
I do have a new ailment.... Oh joy. But its not that exciting to me. Its called... drum roll.... are you ready.... well.... its.... dry eyes. See, its not exciting just like I said it wasn't and I probably blogged about it before. But its just another little pain in the ass thing in my life. A sign that my body continue to fall apart at an amazing rate. Dry eyes don't sound that bad but can lead to long term problems.... But they do not cause suffering or ailing or victimization.
And I get to get another medication with an advertising program - Restasis. This is the one with the perky ophthalmologist who is also a patient... Its right up there with a marketing budget probably the same amount as Lyrica which is single handedly increasing the worth of a couple companies by the amount comparable to the GDP of some countries...
The annual cost for Restasis at retail is $3800. Lyrica is a paltry $3000 a year. What kills me about Restasis is the ophthalmologist told me that Restasis comes in little single use vials which contain about 10 drops each and you are supposed to use one vial in the morning and put a drop in each eye and then toss it and use a second vial at the end of the day. Little plastic vials that need to go in recycling and I hope do not end up floating around in the oceans. The doctor said that I can use each vial for both morning and night so I can stretch it for twice as long. But seriously little plastic vials in this day and age? These could make me suffer itself.
Well even if I gave a new ailment, I don't feel like I'm ailing. But then I never feel like I'm ailing. I just don't. Ailing is a word out of a nineteenth century novel where the heroine is reclining after a stressful afternoon tea or childbirth.
I certainly am not surviving anything more than a boatload of doctor appointments as I have said many times before. I just keep adding to the list of doctor appointments.
But I clearly am not suffering. Never have and never will. Unless its a hangnail or a splinter. Or over annoyance over single use plastic vials.
I do have a new ailment.... Oh joy. But its not that exciting to me. Its called... drum roll.... are you ready.... well.... its.... dry eyes. See, its not exciting just like I said it wasn't and I probably blogged about it before. But its just another little pain in the ass thing in my life. A sign that my body continue to fall apart at an amazing rate. Dry eyes don't sound that bad but can lead to long term problems.... But they do not cause suffering or ailing or victimization.
And I get to get another medication with an advertising program - Restasis. This is the one with the perky ophthalmologist who is also a patient... Its right up there with a marketing budget probably the same amount as Lyrica which is single handedly increasing the worth of a couple companies by the amount comparable to the GDP of some countries...
The annual cost for Restasis at retail is $3800. Lyrica is a paltry $3000 a year. What kills me about Restasis is the ophthalmologist told me that Restasis comes in little single use vials which contain about 10 drops each and you are supposed to use one vial in the morning and put a drop in each eye and then toss it and use a second vial at the end of the day. Little plastic vials that need to go in recycling and I hope do not end up floating around in the oceans. The doctor said that I can use each vial for both morning and night so I can stretch it for twice as long. But seriously little plastic vials in this day and age? These could make me suffer itself.
Well even if I gave a new ailment, I don't feel like I'm ailing. But then I never feel like I'm ailing. I just don't. Ailing is a word out of a nineteenth century novel where the heroine is reclining after a stressful afternoon tea or childbirth.
I certainly am not surviving anything more than a boatload of doctor appointments as I have said many times before. I just keep adding to the list of doctor appointments.
But I clearly am not suffering. Never have and never will. Unless its a hangnail or a splinter. Or over annoyance over single use plastic vials.
Tuesday, January 20, 2015
But I'm not that sick (or I didn't think so)
Yesterday I had lunch with a friend. She is someone who has had breast cancer twice, two mastectomies and every complication on the planet. We talked about all sorts of things, including our health. We had a 'healthy' meal of Chinese food. Not to say that Chinese food in general is bad for you but we ate the unhealthy things like fried egg rolls. And we gabbed about all sorts of t hings.
At the end of lunch we parted with the intent to get together for lunch in a month or so again. She said to me 'take care of yourself' in a way that made me realize, she really meant it. I guess she thinks my health is really that bad.
I don't think of myself as that unhealthy but I guess I am. I have to schedule my life in such a way that I allow down time to basically crash for a few hours.
I do have some health concerns plus a few worries on the horizon. But I go to the doctors - many of them - in the first week of October where these will start to be addressed. I am not discussing any of them until my doctors and I get to discuss them and decide on next steps. (Its my blog and I get to decide when I will discuss them.)
But I'm really not that sick (or I didn't think so). I'm not about to drop dead at any time soon. But I will say its hard to develop healthy behaviors when your health is regularly going in the wrong direction.
At the end of lunch we parted with the intent to get together for lunch in a month or so again. She said to me 'take care of yourself' in a way that made me realize, she really meant it. I guess she thinks my health is really that bad.
I don't think of myself as that unhealthy but I guess I am. I have to schedule my life in such a way that I allow down time to basically crash for a few hours.
I do have some health concerns plus a few worries on the horizon. But I go to the doctors - many of them - in the first week of October where these will start to be addressed. I am not discussing any of them until my doctors and I get to discuss them and decide on next steps. (Its my blog and I get to decide when I will discuss them.)
But I'm really not that sick (or I didn't think so). I'm not about to drop dead at any time soon. But I will say its hard to develop healthy behaviors when your health is regularly going in the wrong direction.
Monday, January 19, 2015
Its not the patient's fault
It is never the patient's fault [unless their ailment was preceded by vast quantities of alcohol and the slurred statement of 'watch this!']. So why do people persist in being so insensitive to sick people? And then there are the people who know what you need to get better even though they never went to medical school. Or their religion will solve your problems.
"You have lung cancer, how many years did you smoke?"
"You have breast cancer, didn't you get your annual mammograms?"
"You just need to exercise and eat better and I'm sure the first 100 pounds will easily come off."
"You didn't pray enough so of course you got cancer."
Whatever, if you have the ailment you find this all rude, insensitive, and sometimes worthy of a public bashing (e.g. Facebook slam).
But do you expect to run into it from practitioners of alternative treatments as well? I have from my accupuncturist. But at the same time she didn't understand the ramifications of my ailments. She would also ask when my lymphedema was going to resolve itself.
One person in this article is asked by their reflexologist after prostate cancer surgery - what did you do to bring this tumor on? And you hear the stories about someone passed away from cancer - and it is implied that they did not fight hard enough.
Sick people are people too. They may be going through a bad time in their life but they are still are people with feelings and sensitivity - and may be extra sensitive because they aren't feeling well.
Its not their fault.
"You have lung cancer, how many years did you smoke?"
"You have breast cancer, didn't you get your annual mammograms?"
"You just need to exercise and eat better and I'm sure the first 100 pounds will easily come off."
"You didn't pray enough so of course you got cancer."
Whatever, if you have the ailment you find this all rude, insensitive, and sometimes worthy of a public bashing (e.g. Facebook slam).
But do you expect to run into it from practitioners of alternative treatments as well? I have from my accupuncturist. But at the same time she didn't understand the ramifications of my ailments. She would also ask when my lymphedema was going to resolve itself.
One person in this article is asked by their reflexologist after prostate cancer surgery - what did you do to bring this tumor on? And you hear the stories about someone passed away from cancer - and it is implied that they did not fight hard enough.
Sick people are people too. They may be going through a bad time in their life but they are still are people with feelings and sensitivity - and may be extra sensitive because they aren't feeling well.
Its not their fault.
Insurer bias - or why insure (expensive) sick people?
One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.
Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.
For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.
I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.
Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.
Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.
And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.
To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.
Each year you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?
I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.
Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.
For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.
I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.
Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.
Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.
And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.
To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.
Each year you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?
I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.
Sunday, January 18, 2015
Am I supposed to be suffering?
I read stories all over the internet and in print about people who are suffering from, a victim of, or a survivor of some ailment I have. I do not consider myself to be suffering, a victim of, or a survivor of any damn thing. I am just living.
I do have a new ailment.... Oh joy. But its not that exciting to me. Its called... drum roll.... are you ready.... well.... its.... dry eyes. See, its not exciting just like I said it wasn't and I probably blogged about it before. But its just another little pain in the ass thing in my life. A sign that my body continue to fall apart at an amazing rate. Dry eyes don't sound that bad but can lead to long term problems.... But they do not cause suffering or ailing or victimization.
And I get to get another medication with an advertising program - Restasis. This is the one with the perky ophthalmologist who is also a patient... Its right up there with a marketing budget probably the same amount as Lyrica which is single handedly increasing the worth of a couple companies by the amount comparable to the GDP of some countries...
The annual cost for Restasis at retail is $3800. Lyrica is a paltry $3000 a year. What kills me about Restasis is the ophthalmologist told me that Restasis comes in little single use vials which contain about 10 drops each and you are supposed to use one vial in the morning and put a drop in each eye and then toss it and use a second vial at the end of the day. Little plastic vials that need to go in recycling and I hope do not end up floating around in the oceans. The doctor said that I can use each vial for both morning and night so I can stretch it for twice as long. But seriously little plastic vials in this day and age? These could make me suffer itself.
Well even if I gave a new ailment, I don't feel like I'm ailing. But then I never feel like I'm ailing. I just don't. Ailing is a word out of a nineteenth century novel where the heroine is reclining after a stressful afternoon tea or childbirth.
I certainly am not surviving anything more than a boatload of doctor appointments as I have said many times before. I just keep adding to the list of doctor appointments.
But I clearly am not suffering. Never have and never will. Unless its a hangnail or a splinter. Or over annoyance over single use plastic vials.
I do have a new ailment.... Oh joy. But its not that exciting to me. Its called... drum roll.... are you ready.... well.... its.... dry eyes. See, its not exciting just like I said it wasn't and I probably blogged about it before. But its just another little pain in the ass thing in my life. A sign that my body continue to fall apart at an amazing rate. Dry eyes don't sound that bad but can lead to long term problems.... But they do not cause suffering or ailing or victimization.
And I get to get another medication with an advertising program - Restasis. This is the one with the perky ophthalmologist who is also a patient... Its right up there with a marketing budget probably the same amount as Lyrica which is single handedly increasing the worth of a couple companies by the amount comparable to the GDP of some countries...
The annual cost for Restasis at retail is $3800. Lyrica is a paltry $3000 a year. What kills me about Restasis is the ophthalmologist told me that Restasis comes in little single use vials which contain about 10 drops each and you are supposed to use one vial in the morning and put a drop in each eye and then toss it and use a second vial at the end of the day. Little plastic vials that need to go in recycling and I hope do not end up floating around in the oceans. The doctor said that I can use each vial for both morning and night so I can stretch it for twice as long. But seriously little plastic vials in this day and age? These could make me suffer itself.
Well even if I gave a new ailment, I don't feel like I'm ailing. But then I never feel like I'm ailing. I just don't. Ailing is a word out of a nineteenth century novel where the heroine is reclining after a stressful afternoon tea or childbirth.
I certainly am not surviving anything more than a boatload of doctor appointments as I have said many times before. I just keep adding to the list of doctor appointments.
But I clearly am not suffering. Never have and never will. Unless its a hangnail or a splinter. Or over annoyance over single use plastic vials.
Saturday, January 17, 2015
Surprising people
As I have mentioned before, I go to an amazing gym for dilapidated people. Its a combination of PT and a gym and is full of people with ailments. I see people there daily in wheel chairs, on oxygen, and wearing various types of splints and braces. I know most of the people who go there have medical issues and greatly benefit from the additional support, like me.
When you first join, you get assessed by one of the physical therapists - which consist of three of the four owners - and then work with either one of the exercise specialists or one of the PTs to set up an exercise plan. Then every three months you go back to one of the PTs or an exercise specialist to reevaluate your program.
I went to one of the PTs three plus years ago when I joined. Since then, my health has increased its downward spiral and I decided I needed to go back to one of the PTs and start over. I met with one of the two brothers yesterday to do that.
We started by going through which of my body parts have issues and my medical issues which impact my abilities. At the end of the conversation, he turned to me and said "I had no idea you had so much going on. I see you here going through your routine and did not know".
I had surprised him with my ailments and that I am still exercising. At one point, he did say "I'm sorry" and I said "no you are not supposed to say 'I'm sorry'. You aresupposed to say 'That sucks.'"
But I am a little sore after my new routine but I will be back tomorrow.
When you first join, you get assessed by one of the physical therapists - which consist of three of the four owners - and then work with either one of the exercise specialists or one of the PTs to set up an exercise plan. Then every three months you go back to one of the PTs or an exercise specialist to reevaluate your program.
I went to one of the PTs three plus years ago when I joined. Since then, my health has increased its downward spiral and I decided I needed to go back to one of the PTs and start over. I met with one of the two brothers yesterday to do that.
We started by going through which of my body parts have issues and my medical issues which impact my abilities. At the end of the conversation, he turned to me and said "I had no idea you had so much going on. I see you here going through your routine and did not know".
I had surprised him with my ailments and that I am still exercising. At one point, he did say "I'm sorry" and I said "no you are not supposed to say 'I'm sorry'. You aresupposed to say 'That sucks.'"
But I am a little sore after my new routine but I will be back tomorrow.
Friday, January 16, 2015
Ailment analysis - pre and post cancer
Okay,y I admit I have been feeling pretty crappy off and on for the past few weeks. I don't know what it is. If I thought it was diagnosable, I might actually call my doctor. But as it is just a blahness feeling with nothing really specific, I am not doing anything.
But it does allow me to think about the comparison between a healthy-ish person, a cancer-ish person, and an achy-painy-ish person (with RA and fibromyalgia) and what are the differences in my reactions.
It takes me a lot to call the doctor these days. The more ailments I have the less likely I am to call the doctor.
I have been feeling blah but right now I am getting my blood work checked every two weeks because I added a new prescription for my RA and I see my rheumatologist in two weeks. I also know if I really want to, I can get into my primary care's office on the same day.
I don't wake up each day expecting to feel well. It can be a rare occurrence that I feel great. So these days, I'll just ignore most things.
But it does allow me to think about the comparison between a healthy-ish person, a cancer-ish person, and an achy-painy-ish person (with RA and fibromyalgia) and what are the differences in my reactions.
| Symptom | Healthy-ish | Cancer-ish | Achy-Painy-ish |
| Sneezing/Sniffling/Coughing | Wait and see if it goes away and check out the cold medicine aisle. | Wait and see if it goes away. | It better not turn into pneumonia. |
| Owies | Wait and see if it goes away, then call doctor, maybe, eventually. | Is there a lump? Maybe its a tumor!! | Is there a lump? Probably just an RA nodule. Ignore it. |
| Lumps and Bumps | Ignore it | Is it where a tumor might possibly be? | Definitely just an RA nodule. Ignore it. |
| Headache | Take an aspirin | Is it a brain tumor? MRI stat. | Just another achy-pain. |
| Blahness | Take some vitamins and nap more. | Is my blood work okay? If so, ignore it. | Blood work checked last week and again next week, I can't be that sick. |
| Dizziness | Must be dehydrated, drink more water. | Is it a brain tumor? MRI stat! | Just part of my new lifestyle. |
| Dripping blood | Band aid, butterfly or ER? | Band aid or butterfly? | Band aid or butterfly? |
I have been feeling blah but right now I am getting my blood work checked every two weeks because I added a new prescription for my RA and I see my rheumatologist in two weeks. I also know if I really want to, I can get into my primary care's office on the same day.
I don't wake up each day expecting to feel well. It can be a rare occurrence that I feel great. So these days, I'll just ignore most things.
Self-management
So what does self management mean to you? In terms of your health conditions, if any? Last fall I took part in a survey on this very subject. I don't recall the survey itself but I was sent an email telling me that I did so I guess its true.
It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.
The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.
Two take-aways for me are:
It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.
The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.
Two take-aways for me are:
- Self management hinges on being knowledgeable about your disease and being your own self advocate.
- It also involves not just the physical aspects of the disease but the mental aspects as a coping mechanism.
Thursday, January 15, 2015
One of my other ailments
No today's post is not about my cancers. It is about one of my other ailments - rheumatoid arthritis. This is the ailment that makes my hands and feet hurt and getting out of bed in the morning a bit difficult. As opposed to rheumatoid which makes my whole back hurt or my degenerating disks which resemble an ice pick in my spine when its cranky or my left hip bursitis which also can remember an ice pick. (And I am on all the good drugs.)
The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.
However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.
I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).
So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!
The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.
However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.
I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).
So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!
Doctors and coping with multiple ailments
Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.
Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.
If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.
But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.
Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.
So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...
The eternal life of the patient and questions with all my ailments.
Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.
If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.
But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.
Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.
So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...
The eternal life of the patient and questions with all my ailments.
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