Living with Pain

I am sure I am only one of millions of people who live with pain. I mean everyone has basic pains in life - when was the last time you stubbed your toe, pinched your finger, had a headache? But those go away. The people who live with pain basically don't have pain free times. Right now for example, my back is aching all up through the upper half... I just got up so my ankle is doing okay but I am sure it will kick in later (like when I start my balancing exercises as I cook breakfast). Other people I am sure are in much worse shape than I. I just get to whine about it here (and to my husband and anyone else near by).

This article from the New York Times puts another perspective on the issue of pain. We want to just survive it...And I think it puts other things a little more in perspective. How bad is a stubbed toe compared to something that doesn't go away? Suck it up and deal with it. That's all I have to say at this point. So your knee aches from too much running? Too bad, it will get better. I am running out of sympathy for the little stuff.

Here's the deal with my back. It hurts almost all the time. Every so often there is a nano-second of pain free and I enjoy it but then it quickly goes away. There is no surgery to cure what is going on with my back. It is not an option. I have lower back problems which cause hip and sacroliac joint pain. I also have pain that radiates through my upper back and into my neck (and is kind of a mystery - lower back pain goes down, not up). Sometimes its a dull ache and sometimes its an ice pick sticking into me and sometimes its in between. I am stuck in limbo.

I go back to the doctor in mid-November for a few more discussions and questions about what to do next, are these stupid drugs that I have been on for months helping, and where do we go from here but there is no secret answer. I have had basically all the back pain options there are other than more cortisone injections and they only help specific areas - like a single joint. So I don't know. I hate pain.

On my sympathy and cheerfulness levels, they are way down these days. Be forewarned, I maybe crabby for no reason. Otherwise, life goes on. I take my pills and go off on my next adventure.

Now I reread this post and boy am I negative this morning. perhaps I need coffee. Perhaps I need a vacation (but wait I just got back from one). But I am going to my many-year (too many to say) college reunion tomorrow where I will pretend I am still in my relatively healthy 22 year old body wearing a size 8...

A'Wonder' Drug

So now I have been on Lyrica, a 'wonder' drug I believe, since early August, for my back pain. I was warned initially about side effects - some people get dizzy etc and to call the office after a few days to make sure I was handling it well. I did and thought I was having some progress here. That was then. I do think it helped. It certainly helps me sleep at night - which the doctor said it would do. But I was thinking it was also helping the pain.

Now I am not so sure. As I sit here with the same pain levels I had before I started taking it, I wonder if it is really done any good. If it is doing good, maybe my pain levels are increasing which is why I still am in pain. I don't know. But to be proactive, I decided to use that useful medical tool called the internet to look up side effects. (Go check out your prescription at www.rxlist.com - you get the professional and consumer information and lots of reviews.)

First I have found out lots of people hate Lyrica. But then I take that as only the people who have problems complain. People who are happy with it don't comment, unless they are really bored or something or want to put their two cents in. Anyway, I thought that I can just ignore those.

Then I read the side effects (direct quote from rxlist.com):

"* muscle problems, muscle pain, soreness, or weakness. If you have these symptoms, especially if you feel sick and have a fever, tell your healthcare provider right away.
* problems with your eyesight, including blurry vision. Call your healthcare provider if you have any changes in your eyesight.
* weight gain. If you have diabetes, weight gain may affect the management of your diabetes. Weight gain can also be a serious problem for people with heart problems.
* feeling “high” "

I haven't had muscle problems really. Or problems with my eyes. Weight gain - a friend told me they call it the 'fat drug' as some people gain tons of weight on it - a chief complaint in the user reviews. I will report that to date I have not experienced the 'high' feeling from Lyrica (or any other causes in quite a large number of years). They also talk about allergic reactions and don't drink alcohol with Lyrica or it can cause dizziness or sleepiness.

I have gone back and forth with myself about should I continue or not. Basically I was told take it for three months and come back and see the doctor to see what's next and how I am doing. Sometimes I think I want to ask for something different because I am not sure it is helping me. Some people in user reviews mentioned it only worked for a few weeks and stopped. Maybe this happened to me as well. Its hard to tell. Also, its relatively expensive ($40/month after insurance pays a large sum) and the weight gain issue is just a general aggravation. If I was pain free and gaining weight, I might not mind as much.

Now its not that I feel like I am turning into a total pig while on Lyrica but I have gained a total of 2 lbs but was also hoping that the change in my thyroid medication a few months ago would help me lose some weight. But I do have to say we ate our way through vacation and I haven't been able to go for walks for more than a month because of my ankle.

I think for now (or my current thought) is to continue Lyrica for now until my appointment in November and then see what he says and maybe find out what my other options are. In the meantime, I am going for my morning walk...

I feel so rejected

Yesterday I was rejected by a gym. I saw their booth at the festival on Saturday and stopped by yesterday to get a tour. I expected to get the hard sell. I mean when was the last time you could walk into a gym and ask for a tour and not get a hard sell. (Its worse than going into a used car dealership and taking a test drive.) I didn't. They told me to come back after I get a green light from the physical therapist on my ankle. Maybe they are scared of my list of medical ailments. I mean I only told them about my back, ankle, partially torn ACL (result of a bad day of skiing), and shoulder (potential lymphedema) issues.

This is actually a fairly unique (read expensive) gym. It is owned and operated by physical therapists. When you join you get a full check out by a physical therapist and then a work out plan is custom designed for you by an exercise physiologist (now that's a fancy term). There is always someone around to help you or a mental boost if you need it. Also, every three months, they revamp your exercise program to where you are at that point.

With my back, ankle, knee, and shoulder, I have problems exercising. My ankle hurts when I bend it and I am trying to get it to heal. I can't lift anything over 20 lbs and my back also likes to complain about many different exercises. And my back has complicated issues for my hips as well. My knee doesn't like some cardio equipment. And I have to be careful about shoulder stuff because of potential lymphedema from my lymph node removal. (But that's it. I don't think I have other issues relative to exercise.)

I usually walk most days but had to give it up for a while. I can't lift at the gym because it makes my back hurt. And I also don't know how to use a lot of the different equipment and am chicken that I might hurt myself if I try. So I was rejected. But I will wait and see what the physical therapist says and maybe I'll join in a month or two.

Yesterday also my back was not nice at all. It was very painful. So evidently I have learned not to expect to do something on my feet for 3.5 hours and not be in pain for days after. Actually I should say not be in more pain for days after. My ice pack is my friend.

In the meantime, I am off to work for the day. Walter is leaving on a business trip this afternoon. By the time he returns, I will be off at my college reunion so we won't see each other for a week. This never happens. But kitty and I will deal (meaning we will develop bad eating habits and feel neglected).

Well, that was a fun day

But what was I thinking? I had a great time yesterday. I volunteered at our town's annual street fair for the American Cancer Society Relay For Life booth. I went early when it started with my husband and we hit the library's book sale and a bunch of booths and then had an early lunch. Originally I said I would be there from 1130 to 130 or long if my back held out. I was there until it ended at 3. To be fair it was crowded right up until the end because we had perfect weather. Well, unfortunately my back thinks I should have left at 12 or so because it is VERY unhappy today even though I iced it for an hour after I got home. I may need to call the doctor before my 3 month follow up if this keeps up.

Anyway, I had a great time talking to people. Its amazing, you stand in front of a sign that says American Cancer Society and people come out of the woodwork to tell you one of two things: 1. How great an organization the ACS is and what wonderful things it does. Or, 2. their medical history including the details of their cancer diagnoses or who they know who died from cancer. I was pretty astounded. But we got a lot of people signed up and informed a lot of people about Relay and how they can help.

In the middle of all the hoohah (and there was lots of that as we were almost straight across from the band), the local cable access station came over and asked if they could film a commercial and interview me. Now let me tell you how much time I spent on my hair yesterday. I took a shower and washed my hair, brushed it once and left the house. Three hours later with no hair brush anywhere near by, I was filmed to be on TV. I am sure I looked like I'm not sure what. And then I was told by the other volunteers that they show the clips from the interviews over and over again on the cable access. So there will be lots of opportunities to see me with bad hair. (But at least I have hair. Actually this might be one of my first possible bad hair days in a couple of years.) You can only see me on TV if you live in the same town as me and watch cable access TV.

The crowds were great and there was face painting and hair painting for the kids (and adults if they wanted). We gave out lollipops and stickers as well as info packets. It was a nice day outside. Today to recover I am going to do lots of nothing - which includes laundry and cooking and probably also cooking shows. My back hurts and that's my story and I'm sticking to it.

How long can you balance on one foot?

This is for real. I went back to the ankle doctor yesterday. She was supposed to say everything was fine and I'm all set. But she didn't. (I wish they would get their script right.) First she gave me balance exercises. If you don't know what these are this is stand on your bad ankle (and pretend it doesn't hurt) and balance for a minute at a time (not kidding about the minute part), five times in a row in a ten minute period. Twice a day. How long can you stand on one foot and balance? One minute is a really long time. Especially when your ankle hurts. Apparently this is supposed to reteach your body about your ankle and using it. I used to ice skate a million years ago so I am pretty good about balance. Just tell my ankle to stop hurting. And stopping swelling up.

She also wants me to go to physical therapy. Two or three times a week for six to eight weeks. And then go back and see her. Why can't I have a doctor say 'you are fine, go away'? They don't even need to be that nice. I can handle it. But here's the funny part, she said 'we'll fax your order to PT today and they'll call you Monday'. Last time I had PT (for my back), they didn't call for two weeks and then they said it would take another two weeks to get me in and another week or ten days to start regular sessions. Now maybe they've changed their policies or ankles and backs are different (I know they are different body parts but maybe PT-wise its different) or something else. But I will be pleasantly surprised to get a call anytime in the next week. In the meantime, I'll work on my balancing.

Speaking of scheduling, in addition to setting up PT, the doctor wanted me back in six to eight weeks for a follow up. So the appointment setter said 'hows October 23?' I said 'do you have anything later?' She said 'how's October 26?' (Isn't that four weeks from yesterday?) I said, deciding to be more specific 'do you have anything in November? The doctor wanted a follow up in six to eight weeks.' She said 'The next thing I have is November 23rd.' I said 'that would be just fine' and on my calendar that is eight weeks from now, not four. Maybe it will be better by then.

Actually I'm not surprised that I have PT. And in a way I would prefer it so my ankle really heals correctly and I run less of a risk of not healing right and having a long term problem ankle. And PT is relatively convenient - its 5 minutes from home and I can smush (technical term) it into my schedule. But I have already had 39 doctor appointments this year and wouldn't mind a break.

Otherwise, another long day yesterday. My back decided it doesn't like going out to dinner and protested. How does it protest? Just say 'little ice picks stabbing into my back'. Well, only in selected areas (otherwise, I wouldn't think of ice picks, I would have something else in mind). Today, I am volunteering at a local community event for the American Cancer Society. This means I will go sit at a table for 2-3 hours (depending on my back) and try to get volunteers and donations. But I also get to eat various yummy things from all the local restaurants which will also be at the fair.

Drawing the line

There is a fine line of living with 'cancer'. Once you have cancer, you get put in the special group of 'people living with cancer' and you can't get out. Ever. Sorry. That's the bummer part of it. But anyway, sometimes you get to pretend you aren't in the group. For example, you go out in public and unless you tell people, no one knows you have cancer. Unless you tell them.

Why tell people? Well, if its a medical professional who needs to know, its probably wise. If its a new person you just met, its probably not wise (and don't be surprised to see tail lights in the distance if you do). If you can't do something because of medical issues, you probably should. But you don't need to. I was talking to someone I work with yesterday about flu shots because we work in a school system. He said 'will you get a flu shot?'. I said 'yes, but not because I work in a school but because of other health issues.' He didn't need to know. I didn't tell him. No big deal. It could be any number of health issues that would make me more inclined to get a flu shot, not just cancer.

Then last night I was watching one of my secret addiction cooking competition shows. There is one contestant who keeps saying she had lymphoma four years ago. I didn't mind when the show started and don't really think its a big deal. Then last night's episode contained sections where some of the other contestants were saying basically just because she had lymphoma doesn't mean she can cook. She is clearly not the strongest contestant and I wouldn't be surprised if she is axed in the next few weeks. I think the other contestants don't appreciate her skills and feel she falls back on the 'I had lymphoma' thing too often. So my question is did she cross the line of trying to justify why she is on the show - that she had lymphoma not because of cooking skills? I don't know her personally and think her cooking skills are probably pretty good if she made it that far. And chances are the quotes are skewed and taken out of context because they make great sound bites and the network can play up the antagonism between the contestants.

If I was on a cooking show (and I will never be because I don't cook THAT well and I will never be in front of cameras), I don't think I would walk around saying, 'I'm here because I have cancer, not because I can cook'. I don't think this contestant means to be that way either.

But my point is, isn't there a line basically that goes from being someone living with cancer to being someone who is letting cancer define them? A cancer diagnosis can be a life changing moment for people but it doesn't need to define them for the rest of their life. Part of learning to live with it is NOT letting it define you.

Wow! That was a mouthful this morning. I think I need breakfast and more coffee to recover.

Morning statistics

First, go read this comic to get a smile on your face. Then go get a caffeinated substance and come back (or wait until your brain is functioning for the day) and check this link for statistics on what Americans think about health care reform and if they are able to pay for insurance, medical care, etc and what they think about the troops Afghanistan and the president - all very 'light' topics to start the day.

First I found it interesting that the local TV station focused on a very small number of points from the report - I think they call this skimming the highlights. I read the damn thing. Its 22 pages. I got a second cup of the coffee while halfway through (not that is boring but I ran out of coffee). What does the report tell me:

- There are lots of confused Americans about health care reform and no one really knows how we will figure out a new plan.
- Most Americans do go to the doctor regularly and have insurance.
- The targets of health care reform are going to be insurance companies and hospitals. (What about medical companies who see their products expensively here to pay for 'research' but are available much cheaper out of the US?)
- All the sin taxes are going up - cigarettes, alcohol, etc. - to pay for these changes.
- Finally, most people like the president, what he is doing, and the economy's direction. I am not sure how this fits into a survey on medical issues and health care reform, but they snuck it in.

How does this report help us? I am not sure. It does allow us to be confused in places and overwhelmed with data in others but it also gives us a snapshot of where we are. Perhaps it will be more significant if they can go back in six months and show us what people think on the health care issues (not the political crap) as compared to now. Then we mght be able to better judge it.

But now that you are all bored to death. I am working from home, making broccoli soup, and going for a walk with a friend this morning. She got pneumonia about the same time I sprained my ankle so we have resorted to the more fattening coffee options for quite a while. Today is our first walk since sometime in early July. We will go slow and stay on flat ground - along the lakes where it is pretty - and not go too far. But I really have to work first. None of this internet stuff this morning for me... Well, maybe a little.