Note To Self: Stop Playing Doctor and Self Diagnosing

I have no medical training whatsoever past what I have learned from my doctors in their appointments. So why do I waste any time trying to figure out what is wrong with me? Last night I was lying in bed and trying to decide what was causing the pain in my ankle? Was it referred pain from my knee or hip? Or is it a new pain and what could be the source? Is it worthy of going to the doctor any sooner than my scheduled appointment at the end of the month? I really don't want any more doctor appointments but pain is pain.

And am I trying to self diagnose myself so my doctor can just confirm what I thought it was?

I have no idea what is currently wrong with me this time. I know it isn't that serious and I am not dripping blood so I am not rushing to seek medical care. But I wouldn't mind knowing the source of this....

For all I know my doctors are going to say something 'helpful' like "I'm not really sure what the cause of it is, its probably from either your RA or fibromyalgia and there is no real way to tell." I get a lot of that.

What I really just want is a cure for everything and since my doctors have yet to find the magic wand with that magic cure, so I am trying on my own.

After A Lot of Deep Thought

As a professional patient, I have met with a few million doctors over the years. I have recently done a lot of deep thought recently as well. I have decided I am glad I never even considered being a doctor.

Never mind the ick factor of having to touch people you don't know and look at all sorts of mystery ailments and figure out what is wrong with them. There also is the issue of medical school and internship - way more education than I would ever want. Besides I deserve all the sleep I can get.

On the plus side of being a doctor would be the ability to find a cure for all my ailments. That would be really nice. Actually it would be phenomenal!

But I digress. Another part of being a doctor is that everyone wants to tell you how to do your job. You would think you have enough education to make your own decisions but no. Medical school might train you on how many bones are in the human body, what the spleen actually does, or what your blood count numbers actually mean with having to look it up.

But according to the rest of the world, it doesn't give you a good bedside manner or how to manage a medical practice or deal with insurance companies. And every patient you see presents symptoms (and attitudes) differently. All their family members want to give you their opinions. Never mind the people that want to sue you if you make the least mistake.

So my ultimate conclusion is that, while I am sure I could be the first to come up with a cure for cancer if I was a doctor, I'll pass. I just want my next doctor to be the one to find a cure for all the horrible diseases of the world and cure me.

Are You Cured?

While leaving the hospital yesterday, I followed this car out. While rounding all the corners in the parking garage, I couldn't help wondering what they could be cured of, or what it would take me to get a similar license plate.

I do not consider myself cured of either cancer. They are just in hiding right now. Actually, if you can tell me there is not a single cancer cell left in my body I would consider myself cured but since there are no guarantees in Cancerland, I'm not cured.

Also there are no cures for rheumatoid or fibromyalgia, or degenerating disks. So I clearly wouldn't consider myself cured yet.

This lead me to wonder, when do you consider yourself cured? Or at what point are you cured? I mean skip the common cold. You get a cold, you get over it - that means cured. Or a broken bone eventually heals and you are good to go, so that would make you cured. Or is 'cured' the wrong word to use there?

If you have an organ transplant are you cured after that? As far as I know, you are then on antirejection meds for a long time and would require frequent medical care. But does that make you cured? You could have cataracts and then have surgery, are you cured then? That I would think.

Too much to ponder this early in the day. But I do welcome other's thoughts on this.

We are still waiting!

I haven't nagged in a while but I would like to remind the world that all of us unhealthy people are waiting for that cure. We have aches and pains and doctor appointments and prescriptions (out the whazoo!). We would like those cures so we could return to our normal life as soon as possible.

Once diagnosed with something nasty, life changes (and we are told there is this new normal - that doesn't exist) and are stuck in a yucky limbo waiting for medical advancements to put us back together.

There are a lot of politics and corporate policies and big brother and much more involved in medical research. We don't really care. Take your billions and fix us.
K? Thanks.

PS I am whining and in a cranky mood today.

Excuse me, we would like a cure

Actually a lot of cures. Please.

Biotech and big pharma have come up with all sorts of pills in the last decades. Some of which ease symptoms, think pain meds for arthritis or other ailments. Others represent cures, think penicillin for infections. While the ones which ease symptoms are helpful, personally I would prefer cures.

Last year Gilead Pharmaceuticals released Solvadi, which cures Hepatitis C for 90% of its patients. Previously the only cure for Hepatitis C was a liver transplant. A not so good alternative with a long wait period. This is the $1000 a pill which costs $84,000 per cure for a seven week course of treatment.

In addition to its eye popping cost, it has raised the bar for biotech and big pharma.They need to stop looking at incremental medications which offer a few weeks or months of extended life or symptom easing pills and focus on the medications which provide true cures.

Biotech is teetering on the edge of a precipice where the big dollar mergers and investors could become a thing of the past. Incremental advances for huge prices may also become history.

As the patients, we should be able to add our two cents to the discussions as well.

The killer bacteria

There is killer bacteria at your doctor's office, in the hospital scope, in the air, on the ground, and on the nine things in your house dirtier than a toilet seat. All those unvaccinated people are going to spread measles and other diseases. People with compromised immune systems should take extra precautions to avoid these bacteria. Blah, blah, blah.

And how am I supposed to avoid doctor's offices anyway? I am a regular visitor. There has been so much new recently on all these topics. And I couldn't care less.

I am the poster child for immune system issues, bad health, and all that. And I take zero precautions. Other than being normal and avoiding sneezing, coughing people.

Isn't there anything else on the news anyway? Where are we in terms of a cure for cancer, rheumatoid arthritis, and fibromyalgia? And lymphedema if we are on the subject of cures.

The killer bacteria are out there but so are many other ailments that warrant news, research, and cures.

John Hopkins did not discover a dietary cure for cancer

There are a couple of hoax emails going around that have gotten the folks over at Johns Hopkins riled up enough to write a rebuttal.

I do find this humorous in some ways. How many emails have you gotten offering you a cure for anything you want and more. Either they are based on some known item that you just need to eat more/less of or not something like not cook in saran wrap. Or they refer you to someone far away with a really long name who promises you an elixir or prayer or something else that will cure you.

There are a few things they all have in common:

• Typographical errors and misspellings.
• Bad English
• Over promising

Back in the 19th century we had quack doctors who went around the country selling their cure alls. Now they don't need the horse and buggy, they just need the internet and your email address. But just remember if its too good to be true, it probably is. Use your delete button.

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....

Allow me to be whiney

Its my blog so I can be whiney if I want. If you don't like whininess then just go away for the day. I am going to be whiney today because I still have a cold. Back on March 20, 2008, I blogged about Cancer Vs. The Common Cold and indicated that I was waiting for a cure for cancer and a cure for the common cold. That's plenty of time. I am on day 7 of another evil cold here and I still feel like crap. This is not fair. I am sick of being sick.

I DEMAND a cure for both the common cold and cancer. I am going to be a demanding, whiney brat about this. Its time. Plenty of money has been spent on research for both of them and I do not believe there is an evil conspiracy by the pharmaceutical companies to hide any cures they have because they make so much money on the medications and treatments for both.

I am not being a good patient at this point. I am living on tylenol (no aspirin products for me because I am on anti inflammatories for my back), no decongestants (because between being allergic to decongestants and no thyroid - I can't take anything that says don't take if you have a thyroid disease), herbal tea with lemon and honey, cough medicine, and whininess.

I can't even whine to the cat because he is vacationing at my parents house - not yet returned after our vacation last week. I am whining to my husband but he makes fun of my squeaky voice.

I know if I go to the doctor she will just tell me to drink plenty of fluids, take tylenol, and wait it out. Whine, whine, whine, grr.

Doctors have a history?

Wait, that can't be. Doctors are supposed to be all knowing and medicine should be black and white. This symptom means this, that one means that, and it is curable by this. None of this nonsense of maybe this, maybe that, never mind that once before they saw this and the result was that.

But no, that is not the way life is. Doctors have a history as well. Life is not fair. Doctors go through medical school and then get out in the real world as residents and start seeing patients who color everything in shades of gray. Women and men don't show cardiac symptoms the same way. Heck, every cancer is different - put ten patients in the same room with the exact same diagnosis and then start comparing their treatment protocols, how they reacted them, and their current medical health - nothing will be the same.

Doctors learn the facts in medical school and then learn the gray shades from their patients and how complicated things really are. In some sick way I take pleasure in stumping my doctors with my multitude of issues. But really I would prefer to be healthy. I also want a world with black and white medical answers, none of this shades of gray, with cures for everything.

Waiting for the medical magic wand

Still waiting. Yesterday I went back to my stupid ankle doctor (my ankle and I are stupid, not the doctor - I sprained my ankle by thinking I was smart and could look over my shoulder while walking). The last time I saw her six weeks ago she gave me a cortisone injection in my ankle to see if it could help drain some of the fluid left in it when the ligament and tendon tears healed up. It worked for a bit but then my ankle started hurting again. Her response to that was that's about the length of time that an injection will work.

The only thing she can do is if I still have pain in another six months (two years from the original injury) she can go in with a scope and clean it out. I have had enough surgeries thankyouverymuch. So as there is still no medical magic wand to heal me, I am stuck with a swollen painful ankle.... It matches so many other body parts with injuries that decline to heal - the partially torn ACL that decides to act up periodically and can only be cured by big time knee surgery, or the tennis elbow that doesn't like going to the gym and forces me to wear my stupid wrist brace, or my bursitis hips that also would prefer a life of lethargy.

Her parting words to me were to work through the pain and ignore it - the best way to heal it. Can't I just have a magic wand instead? One that works on cancer and all my other ailments too please.

A bit more 'blah, blah, blah'

Frankly I am not very impressed by the big news that lung cancer mortality rates are reduced by CT scans. Why? Because its not a screening for everyone like a mammogram. Its a screening for current or ex-smokers who have smoked for 30 pack years. What is 30 pack years? People who have smoked a pack a day for 30 years or 2 packs a day for 15 years. So if you have been abusing your body through heavy smoking for years, now we can help save your life.

I am a former smoker. (I'm not going to tell you how old I was when I started smoking because my mother reads my blog but you can be assured that I started smoking before college. But then she used to smoke too. In fact sometimes she would bum cigarettes off me.) I was a bad teenager and smoked. But I have never smoked that much. At my worst, I was probably a half pack a day. But for the last 20 years, it was probably 5-7 cigarettes a day. Yes I kept smoking after my first cancer diagnosis. Then I quit, then I started again, then I quit, then I started again, repeat for a few years, and then I finally really quit - after my second diagnosis.

What I am trying to get at is I know how addictive smoking is too. Its very difficult to quit. But don't tell the heavy smokers that now they can be relieved of the thought that they might be able to find out if they have killed themselves through their smoking through a CT scan of their lungs. This is nothing more than the strategic implementation of a test to see if the harm from the smoker's self abuse can be detected before it kills them.

Also, even though smoking is a leading cause of lung cancer, there are thousands who get lung cancer and die from it even if they never smoked in their life.

We still need a cure. Don't get stuck on the detection side of things, find a cure please.

Wishful thinking

I have seen dozens and been told of many more 'new cures' for cancer. Some of them are quackery, some of them are real but are only considered hopeful leads but no real breakthroughs. With cancer, we are constantly hopeful there will be something new.

My lymphedema is not much different. Again its something without a cure. It only can be managed through exercises, compression and massage. Your arm, or other appendage, can swell up permanently and never return to normal. Basically, your drainage system is broken and irrepairable.

Then I found this, a woman had lymphedema and then had a lymph node transplant and her arm recovered. A bit of wishful thinking on my part would be to have something that can actually be cured. Cancer isn't going away. Back issues aren't going away. Maybe someday lymphedema can go away. I know I must be patient because this is only one documented case and my arm is not that bad now. However it is nice to know that if it ever became really bad there might be hope for a cure.