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.

A Useless Appointment With My CPAP

I go to a very good hospital for all my treatments. I usually have good productive appointments and don't feel I wasted my time. Yesterday was completely different.

Last week I blogged about Rebelling because I hate my CPAP machine so much. I was waiting to find out about my oh-so-important desensitizing process to be able to use the damn thing. Yesterday was my big appointment where I was to be educated. This is what I learned:

In order to get more comfortable with my damn mask, I should wear it around the house so I can get used to wearing it and then I should be able to start using the damn thing. That was not very enlightening. I had already tried it and still hate the damn thing.

I also learned what the options are for apnea treatment if you cannot deal with the damn mask:

• surgery - where they remove your tonsils, adnoids, uvula (the thing that hangs down at the back of your mouth), and part of your tongue (doesn't that sound disgusting? It will never happen to me).
• dental device - like a retainer which pushes your lower jaw forward at night. But then you have to be able to wear a retainer while you sleep.

I shall not be doing either of those. I will attempt to try the damn mask again but if I can't adapt, I ditch it and cope with the consequences.

I also asked about my problems when I do sleep with the mask I get these awful weird dreams and do not feel rested when I wake up. The reason I was given is that I probably never reach REM sleep without the mask and dream as much. So if I do use the mask, I can attempt to sleep with a mask on my face that I hate and have weird dreams that leave me feeling out of sorts. Not a good combination.

This is clearly a case where I should have skipped my doctor's advice and never gone on that sleep study last fall. All this in pursuit of a good night's sleep. Damn.

And I wasted an hour yesterday learning all this.

Bad Dreams

(Subtitle: How to drive yourself insane crazy.)
Life on a medical roller coaster sucks. As a potentially sane person you do your best to tamp down any part of those 'what if' fears during the day time. This is a big part of learning to cope with a crappy medical diagnosis, especially a cancer one.

But then comes night time. You are trying to sleep and you dream about 'bad things'. All those evil little 'what ifs' come lurking into your head. Then you can't sleep. Then you are cranky because you are tired. And you can't control your brain because you didn't get enough rest.

That Was a BAD Dream

Last night I had a weird dream. I woke up around 3 AM after dreaming that I had a rock hard lymph node on the top of my chest, near the base of my neck. In my dream, I could slide it around and feel it. A bunch of doctors were there trying to explain to me that it wasn't a big deal and chemo would solve everything. Thank god I woke up!

But of course, then I had to see if I could feel a rock hard lymph node on my chest near my neck. Of course I couldn't.

Nothing like a dream to show your worst fears in 'living color'.

And did I ever get back to sleep? No. I am sure I will feel very 'energetic' this afternoon....

Pie in the sky!

The lovely smart people at Komen have announced their new goal: To reduce breast cancer death's by 50% in the next decade. Um, this makes me think of the Deadby2020 people. 

Its so logical to to just come up with a great, yet unattainable, goal that makes an awesome headline so you get great publicity to get more donations for this unrealistic idea. 

Its all about the headlines. This is how the PR machines crank out buzz. Seriously. I used to work in marketing and PR and this is what they do. Now the organizations may think they are reasonable goals but if you think about them, they aren't. 

Can an organization decide that they are going to obliterate a disease over a ten year period that has been researched to death (no pun intended) for a very long time? Does that sound logical? No. Or how about another organization decides that they are going to cut the death rate in half from a disease that has been increasing mortality? If something is still rising, how can they just cut it in half? Again, not logical. Or feasible.

I am sure the people at the both Komen and NBC 2020 think they have come up with good ideas. But honestly I am not sure how realistic they are. And if I recall correctly didn't the urge to end breast cancer by 2020 start before 2010 and now they have just over 3 years to go and I haven't seen much progress. Yes I know there have been incremental advances but no solution yet.

These are basically your pie in the sky PR dreams to raise money.

Sympathetic or Over Sensitive?

When you were diagnosed with cancer, didn't other people with cancer come crawling out of the woodwork? You met all these people to talk to about cancer and help you through your diagnosis and treatment.  You got diagnosed so you can talk to other people in cancerland. That is fine, actually pretty cool. Its actually nice to bond with people who are coping or have coped with the surgeries, chemo, radiation and all that other 'fun' stuff.

But then, if someone you know knows someone else who was diagnosed with cancer, do you feel like they rush to tell you about it? Or are they asking questions of you to help their friend? Or are you just being hypersensitive?

I remember when I was in college a couple of years after my thyroid cancer diagnosis, a guy I knew was diagnosed with cancer. He was brought to a party by a mutual friend who brought him over to me so we could talk. He had a late stage brain cancer, only lived a few months longer, and was in a wheelchair. It was actually great to get to know him better but a very sad conversation.

Afterwards I started thinking (which I should never do, I know) and almost felt like I was expected to talk to him because we both had cancer so therefore we must know each other and be friends. Even though our cancers were completely different on all levels.

Since my breast cancer diagnosis, I have been more open about my medical history and talk to people all over all the time about cancer and other medical issues. I am happy to talking as many people who want to talk to me about medical crap (all cancer is crap).

I had a nightmare dream last night that I met up with an old friend from college (who's brother was married to someone I went to high school with) who was going out for a big dinner an hour before his last hope surgery for lung cancer at a time when I was also hospitalized. In my dream, I felt very stressed about my old friend (who was a melange of a bunch of old friends) being so sick and running out of options when I was hospitalized only for a minor issue and went home the next day. (And who goes out for dinner before surgery?)

When I woke up I felt I had been very put upon my by high school friend and her husband because I had cancer I was supposed to be the 'caretaker' of the sick friend. Then I started thinking about it (I promise I will try to stop thinking as much):

- am I the good sympathetic resident of cancerland; or,
- am I becoming oversensitive to the 'friend of a friend of a friend who was just diagnosed with cancer'; or,
- am I becoming a cynic about all medical crap?

Not so restful sleep

I have lots of problems sleeping. Its tough to have ailments which cause both fatigue and insomnia. So being the good patient that I am, I spoke with my doctors about getting some sleep aids. I was prescribed one and given the caution that it can cause weird dreams. And it does. Yowza!

I get the weirdest dreams with places I have lived piled up on top of each other, with different friends, family members, pets, etc all mixed in together. I wake up feeling all agitated. I cut the dose to half a pill. Then I tried adding some anti anxiety meds, which leave me in need of a nap.

This clearly isn't working. I wake up having slept but with a knot in my stomach. I need a new plan here.

So back to the damn doctor I go. As if I need another doctor appointment.

Dear Medical Researchers

Dear Medical Researchers:

This is what I want from you, besides a cure for cancer.

1. A medication with these side effects: weight loss, the ability to get 8 hours of consecutive sleep, and anti-depressant.
2. A cure for the common cold. This should be easy after a cure for cancer.
3. Medical tests that do not come with a 'pinch', a burning sensation, or being stuck with needles or any other 'ouchie'.
4. A dictionary that instantly translates 'doctor-speak', either the mumbo jumbo of big words or the vagueness of a non-answer, into normal human English.
5. Thrift - I want inexpensive treatments that will not line the pockets of pharmaceutical companies or others so that the term 'medical bankruptcy' will become obsolete.

That's not a very long list so it shouldn't be that difficult. 

Thank you.

A patient.

Its never too late

 

Its never too late and never give up. This is a wonderful story o a woman with terminal leukemia, with a short time to live. But it was still not too late to get married, in the hospital with the chaplain.

Cancer may take many things from people but it can't take away all our dreams

Live out your dreams

There are people around us who inspire us. The latest in the line is the boy who at 11, had a brain tumor with a poor prognosis. He now plays foot ball. It was important to him to play because he didn't want to wonder what his life would have been like if he didn't play. And he wants to inspire people and prove anything is possible.

Another one is Jothy Rosenberg who with one leg, is an amazing cyclist. His blog is entitled 'Who says I cant'.

A bit more of a canned version of this is the movie 'The Bucket List'. Just because you are old and dying of cancer, doesn't mean it has to be dull and boring. Do everything you can while you still can.

At 19, I was told to go live my life as I should (not a good word in medical terminology, 'would' would have been a better choice). Then followed a long lecture of what not to do and to do - get plenty of sleep, eat a healthy diet, continuously monitor your health, get regular check ups, blah, blah, blah. Well I was in college, I wanted to stay up late and drink beer with my friends.

I thought about it and came to the decision that while I wasn't going to play in traffic, I was not going to live a boring life. I have traveled internationally, I have studied abroad, I skied off the headwall in the Rockies, snowshoed up mountains, bike riding, roller blading, went on Club Med vacations, climbed mountains and more. Next year I am going to Iceland. I can't hike, ski, snow shoe, roller blade, bicycle, climb mountains any more. But I can still walk, take pictures, experience a new culture, and have fun. Because I can.

Then when I come back from Iceland, I'll have to plan our next trip.

I dreamed about the garbage disposal

A little background here so you don't think I am too weird. I had sedation last week and I always get weird dreams from the drugs for a few days. Whenever we have issues with the garbage disposal, I am the one to reach in and 'rescue' things. Most recently this included the little top for the pressure cooker (and am now in search of a replacement one). But I digress, the other night I had a dream about the garbage disposal that for some reason something got stuck in it and when I reached in it was full of broken glass all over the bottom - like light bulb glass. Then in my dream I decided it might be better to grind it up and send it on its merry way down the drain.

In the morning, I thought 'what a weird dream'. So if anyone wants to analyze that, feel free and tell me what you think. But if it says anything about cancer, forget it, don't bother.

Yesterday I went to work and then for a walk. There is a nice big lake conveniently on the way home which is about 3 miles around. I decided to take advantage of the nice weather and get my daily walk in there. It was quite nice - a little crowded but nice.

Today I am behind schedule. Usually between the combination of my husband getting up and the cat wanting breakfast there is no hope I get to sleep past 6. Usually the cat comes back up and sits on me until I get up - a 15 lb cat on your stomach is not conducive to sleep. Well both failed in their jobs this morning, and I didn't wake up until 7. That doesn't sound very late but I have work to do and then have to get out of here around 9 for an appointment. Later I am meeting a friend for a walk and then need to fit in a good chunk of work this afternoon. My life is not too exciting.