Its Complicated

Personally, I do not consider myself to be a complicated person. However, alas, my health is very complicated. Yes. I am the kind of patient that forces doctors to consult with other doctors on my health before they see me or offer treatment options. They come to me with big sighs and long and repeated looks at my charts.

Nothing is simple for me.  I am ineligible for clinical trials because my health is too complicated so I am always kicked off the list. Medications are complicated. I am allergic to lots of things or they might interact with all my other medications.

If I go to physical therapy for anything, I can never do the standard exercises because they make my back, knee, hip, or something hurt.

I wish I was not complicated. I would be happy being very simple.

Declining Health Abilities

Yesterday, a friend and I went to the NH Sheep and Wool Festival. We are knitters,weavers, etc and bona fide yarn junkies so it was the perfect trip. However, we got exhausted. We even went and napped in the car in the afternoon so we could make it to the events we wanted to see.

On the way up, we talked about our declining parent's health. Her father is in his early 90s, my parents are in their late 80s. All of them have physically declined over the years, as would be expected for their age, but mentally are going fine.

This morning the two of us feel beat up and are exhausted after yesterday's walking and sitting. And napping. Today we are feeling closer to our parent's ages than our ages (37 still in case you are asking). I slept a solid 10 hours last night and that helps me a lot to get through today.

Days like this make me realize how much my health abilities have declined, similar to my parents. But I feel it is more expected for them than for us.

I am not trying to run a marathon, something that I have never dreamed of doing, or even go on a 15 mile hike as I have in the past. I am talking going for a day of fun which included more sitting than walking.

I realize I am getting older but I think my brain thinks I am 37 but my body thinks I'm 80. And its just not fair.

Taking Charge of My Medical Crap - Again

I try to be in charge of my medical care. I really do. I take notes at appointments and I write little notes to myself in my calendar on things to ask my doctors at each visit. I am not sure if I am weird for doing this or not but I have no brain so I can't remember anything.

In recent months, I have a new pain management doctor who has been very good at talking to me about different pain medications and what are options. I am very happy with this. Basically he is helping me switch to new medications to replace the ones that I have with ones that work better - fewer side effects, reducing the number of medications I am on, and focusing helping me. I really like this (and resent my old doctor who just gave me more medications and more medications.)

After my most visit with him this week, I am now energized to talk to my other doctors about the number of medications I am on and how they work. The next two doctors who prescribe the most meds are my meds therapist, who I see this week, and my rheumatologist, next appointment at the end of the month. I want to review all my medications and see what we can do to get rid of ones I do not need or find better alternatives if available.

I often run into problems finding medications to treat basic things such as needing antibiotics. Because of my allergy to penicillin and my other medications, I am very limited in what is available to me. Maybe with changes, I could actually get treated when I need it.

But anyway, I want to talk to my rheumatologist and meds therapist to see what we can do. I also want to take a personal inventory of current issues and decide what I should ignore and what might actually be treatable. I feel I need to do this because I have so many issues and I rarely see my PCP. I need to be organized before I see her in September so I am in charge when I see her.

I think I need to take more notes.

Talking About Medical Crap

This morning I briefly had the opportunity to read a wonderful blog post about why the writer writes about her medical issues. It was a great post that clearly spoke about all the issues us 'less than healthy' people have in our lives. Now I can't find the link to it but it definitely spoke to me. So here are my thoughts on this, in a less well written post.

I talk about my health issues because there is no reason not to. I am not going to be job searching again so I don't need to worry that a potential future employer would learn how unhealthy I am and therefore choose to never hire me. There is no way I am every going to be able to work full time again. So that is one of the big reasons people don't talk about their health - it could prevent them from being hired at some point in the future.

But the biggest reason I do talk (and write) about my health is that it is a big coping mechanism for me. Yes, talk therapy. Its a wonderful thing. Its the reason support groups, on line groups, and all that other stuff exist. So I am not the first person to come up with this.

Also, there is that little evil voice in my head that pops up every so often that says 'I HAVE SEVERAL CHRONIC DISEASES SO THE FUTURE ISN'T THAT ROSY'. I think if I keep talking about it and my limitations I might get more comfortable with talking about it and stressing and depressing less. Although life can be made better through chemistry (read: anti-depressants), it would be even better if there were no need to require them at all. Which leads to the next question would I be better emotionally if I was healthier? One would think so but it is impossible to know if true or not.

My thought for the day is to talk and write about my health issues but not to allow them to dominate my life.

Another Year Goes By

We are at the end of another year. This one for the country has been filled with amazing ups and downs and controversy and more controversy. All I know is I have survived another year, even if I have yet another horrible cold. But what I don't know is how did I do on last year's resolutions?

Do you keep track of your resolutions each year? I know I never do. But I'll get back to that.

So each year, I make resolutions so that I will work on making changes in my life. I have a feeling, in fact, that I make the same resolutions every year. I honestly wouldn't be surprised about that at all. I think I probably want to lose weight every year.

People are creatures of habits and habits can be hard to change. Take anything from losing weight to eating more vegetables. You are good for the first few days and then fall off the wagon. And then there you are again. We all create our own vicious cycles.

You weigh yourself and go on a diet because of the shock you just got. You start to lose weight, feel a bit better, and weigh yourself again. You have gone down a couple of pounds so you celebrate by eating a jelly doughnut and a skipping your salad for a couple of days. So you weigh yourself again, and start over again.... and again and again....

Next time, don't weigh yourself at all (leave that for the doctor's office and their big fancy scale), go on a good diet and don't have a jelly doughnut for six months when you can wear pants two sizes smaller even on your 'fat' days. Wasn't that easy for me to write?

So there you have it. I wrote the problem the solution and still haven't done anything about it. Now I am going to peek at what my resolutions were for last year (because I have a blog this is actually easy). This was last year's resolution:

"I have a resolution finally for the new year: I will stop using my blog as a place to whine, especially about moving. I use my blog to write about issues which matter to me which recently has included a lot of whining about moving."

And the year before which was actually a repeat of the year before that:

"Younger
Thinner
Taller"

So I think by now, I have gotten past the younger and taller part but am still working on the thinner part. But now I have to get rid of my own vicious cycle and leave that part out. That is the part that should be my resolution. Skip the diet part and get straight to the vicious cycle. 

I know part of that: I can't exercise as much because of my health issues. I can't exercise more because of my health issues. My health issues can cause me to be depressed and stress eat. So it all goes back to my health issues.... 

I am way too far off topic here. But not really. Another year has gone by and it is behind us. It is time for me to move on to get past my personal vicious cycle. It is time for the country to get rid of its own vicious cycle of division and hate and to move on to working together.

I Haven't Been Blogging

I haven't been blogging recently and I haven't figured out why. Well I do have some thoughts on the subject.

Originally I started this blog as a way of communicating my medical disasters, especially with breast cancer. That is what I told everyone. It was also my way of venting. Sort of journaling. It was very helpful to me in both ways.

Over the years (9.5 to be exact) the topics have added and changed, as my health has continued to decline. My blog has been so helpful to me.

But I have hit a major wall, writer's block so to speak, in recent months. Its not like I haven't had medical issues to deal with. I just haven't been very good at writing about everything.

I did have some major distractions because I did some travelling. But I haven't been able to write. I also have had some fun and its getting to be craft show season for me.

I think I just need a break for a bit and will be blogging again.... So my blog may be intermittent for a bit but I'll be here and blogging regularly again.

Am I making a bad decision?

Today is my last day of work. Well, I will continue to work one day a week from home and go to the office once a month until my replacement is found. And I will go into the office to help train him/her for a few days.

The reason I am leaving work is my health is not that great, in case you hadn't noticed. Even though I have cut way back on my schedule, I still am fighting fatigue and aches and pains. One goal in moving is to cut way back on expenses so my non-existent income will not be noticed.

Three years ago,  in the fall of 2012, I was diagnosed with both rheumatoid arthritis and fibromyalgia. (Actually it was exactly three years ago tomorrow that I announced this.) At that point I was working two jobs and a total of about 30-35 hours each week.

In early 2013, I resigned from my other job because I could not physically keep up the pace of working so much. It also required nights and weekends. In 2014 I started working fewer and fewer hours in my current job. Now I am down to about 8 hours each week, and I can barely keep up.

With the decision to move and reduce our expenses, it became much easier for me to decide to stop working. I am looking forward to having more time to take care of me.

During the next few months, I will have plenty to do with moving and the holidays and craft shows. Once we settle into a new house, I have no plans on staying home all the time. I would like to find some volunteer work to ensure I get out of the house and don't go stir crazy - but that would be fewer hours with more flexibility. I also plan to continue to go to the gym three times a week. My sanity is important.

But I must return to my original question of am I making a decision? I guess it would be a bad one if I was only thinking financially. But I do not have that luxury any longer.

Keeping silent on health issues

I find it very sad when people feel forced to keep their illnesses private. As you may have heard, Jackie Collins, the author, died this weekend of breast cancer. Apparently she was diagnosed six and one half years ago with stage IV breast cancer and only told her daughters.

Many people do not tell others about their ailments for a variety of reasons. Some may want to keep their health private but others I think feel forced to keep their health private. I can understand this at some levels. Why open yourself up for pity or stupid platitudes that we all want to avoid?

But then I think there are people who keep their health issues quiet because of potential bias from employers, friends, and family. The stupid 'they got *** so they are going to die' mentality. They are ready to ready to plan your funeral and split up your belongings immediately.

A woman who I worked with told me when she hears about someone's cancer diagnosis, she is ready to write them off because cancer will get them soon. This is just so sad. Others keep their health silent because they do not want to damage their career. Managers don't want to hire people who might drop dead on them, or require lots of health care and time off.

Our culture tells us those with health issues must be treated differently. When I go to the grocery store with a wrist splint on, the baggers always put two items in each bag so to 'accommodate' my perceived health. These same baggers fill the bags up when I don't have a splint on. Yes they are being polite but overly accommodating. I have no more desire to deal with twenty bags of two items each than two bags of twenty items each. But some kind of balance in the middle would be good for all. Or you could ask how heavy I want the bags to be. That would be an appreciated accommodation.

Too many people make assumptions about other's well being. Perhaps if they asked instead of assumed we would all be happier. And no cancer is not going to kill us tomorrow so stop treating us as if we were made of glass.Treat us normally. Thank you.

More than one ailment

So I read the news, a lot. And probably I read too much news and especially health news - searching for the elusive cures. But in reading the news, I see lots of different opinions and announcements as one would expect.

Two things caught my eye this morning. One reminds us that breast cancer is not the main killer of women. Its heart disease. While we cover the world in little pink ribbons for breast cancer, we need to remember heart disease and other ailments are out there as well and that also kill people.

Another article I read is about a woman who blogs about life with fibromyalgia. I read the article and then thought for a few minutes (a dangerous proposition I know). Yes she is struggling with fibromyalgia. But there are people out there, like me, that have fibromyalgia and additional ailments. So those struggles with fibromyalgia are piled on top of issues with other ailments or issues.

When we are diagnosed with an ailment, it becomes the hyperfocus of our lives. But we need to realize that we are not the worst off, there are many others who have their own pile of problems, including poverty, mental illness, and more and are in much worse shape.

Imagine life with your pile of ailments and issues and compound it with additional ones such as poverty, lack of health insurance or transportation, isolation, or other issues.

I make myself sometimes peel off my layers of focus on my life and keep the awareness of others who are worse off.

Things that annoy me

I am sure you all can think of things that annoy you. We all have our pet peeves. But since its my blog, I get to tell you mine. You can feel free to leave a comment about yours if you want too.

I always get annoyed by people making assumptions. You know they assume you are going to die because you have cancer. Cancer is not fun but its not necessarily going to kill you. You could get hit by a bus anytime. Think of it that way for a bit. But I really hate it when people make assumptions about others relating to health. You have no idea what I am going through so stop assuming anything about me. You can ask me about it but don't assume I want to tell you my entire medical history. I will tell you what I feel like discussing but I am not going to have an in depth discussion about my health.

Then there are the idiotic thoughts about my health by, well, idiots. Those are the people that either:

1. Ignore the fact I have health issues and can't do what I used to do. Do you want to go hiking? We are going peak bagging this weekend. You should come with us.
2. Assume I will be cured. (See assumptions above.) I am not going to be cured. The best hope is no further health issues or disease progression. Stop telling me that because I had a back procedure, I must be fine now.
3. Tell me how I feel. You must not hurt much today since you didn't work yesterday. Um, pain and fatigue don't give me breaks because I took a day off. That day off was to recover from the days before.  (I think I am stuck on assumptions here).

Finally there are the people who insist on telling me what treatments I need. Did you go to medical school? No? Then shut up. I don't really care what your cousin's neighbor's dog walker's mother's hair stylist's friend had for treatment for a completely different disease twenty years ago.

I also get annoyed by things like people who stop their car in the middle of the road for no reason,  people who use their cell phones in restaurants or movie theaters, and at the cat who won't eat enough because he's old and can't smell his food, but you get the point.

See, I'm not perfect. I am just a normal person stuck inside a body that has lots of health crap.

Why I Blog

I have finally figured this out. Why do I blog? At first it was to help me cope with my latest cancer diagnosis and communicate the progress to others. Now it is to help me cope with my health, and the disaster that it is.

It has taken me a long time to realize this. Yes you may call me slow. Someone sent me a link to a New York Times article on the terms we use that are associated with cancer treatment. That article made me think. Its title, coming to terms with cancer, also made me think about, not the terminology for cancer, but the phrase 'coming to terms' meaning 'coping'.

So now my thought process is that I blog to cope. I can express myself on the issues surrounding living with cancer and other long term ailments. I am getting really sick of the word 'chronic' because I find it makes me think of the word 'terminal' which is really a bad word. I like the word 'cope' much better.

Blogging means I express myself, my hopes, dreams, frustrations, aches, pains, as well as my doctor appointments, problems, and stupidity. All this helps me cope.

I know where I am is a lonely place in that my health is complicated with two cancers, RA, and fibromyalgia. There are not many others, if any, with the same set of health issues. Because of this, I do what I can to cope and blogging is a big part of it.

Am I that bad off?

These days it seems that people who know me are constantly asking me how I am doing. Hmmm.... Am I that bad off? I know I do have a fair number of ailments but I don't think I am that bad off.

• I know yesterday I was driving to work and realized that I forgot to bring a wrist brace to work, so I stopped and bought another one. My arm was already hurting on the way in so I knew I need one to get through the day.
• I did two craft shows this weekend and people were telling me on Sunday and Monday that I looked and sounded tired.
•  am going to the gym after work tonight and my husband has instantly assumed that he will have to cook dinner. 
• I don't seem to be expected to do as many things with others as I might have in the past because I might not be up to it.

It has taken me a few years of telling people that I am not always up for things because I need to rest or take it easy and now it seems to have gone too far in the other direction. I almost feel like I am being coddled.

But then I watch people doing things that I used to do and cant any more - downhill skiing and getting airborne off the moguls, cross country skiing through the woods - up and down the hills and dodging trees, winter hiking in the mountains - and think maybe I am not as capable as I used to be. Crap.

Telling your story

In recent months I have alluded to friends and family with health issues. I haven't provided details as it is not my story to tell. If they wanted me to share their story I feel they would tell me. But as this is my blog and not their friendship circle I doubt that would happen.

You are probably also aware that I don't always tell my medical (mis)adventures until I am ready. I have many reasons for this:

1. Sometimes minor medical issues become overblown because of my medical history. Its one thing if my doctors say to me 'with your medical history we have to be sure' and send other me off for another series of pokings and prodings. But its another thing if I have friends and family call me up unendingly over little things that are nothings. It drives me crazy.
2. Sometimes minor medical issues become much bigger ones (as a result of the additional pokings and prodings) that I need time to digest, figure out a treatment plan, and how we are going to handle it.
3. If I wrote about every twinge and pain, I would have everyone bored to death in hours. This is why my husband accuses me of whininess now and then

I realize there are normal healthier people than share their medical adventures much more openly. That is their choice.

Privacy is something that can't be restored once broken. You need to allow people the option for privacy.

Old friends

Recently I have been catching up with high school friends on Facebook (that evil time suck). Some one posted that a former classmate had died of breast cancer in March. Then another posted that another had passed away last fall. I asked how/when and one classmate told me what she had heard and another classmate told me he died of AIDS. I replied to him that AIDS and cancer aren't picky about who they pick. It turns out he is a 12 year volunteer with ACS' Relay For Life. It was only then that I told him about my fun cancer adventures.

A few months ago I reconnected with another high school friend. It turns out he successfully battled testicular cancer ten years ago and is now fine. After he told me that, then I told him about my adventures.

Yesterday I went to a party where there were some friends I hadn't seen in more than ten years. I didn't talk about my health because I didn't want to spend the afternoon talking about it. I preferred to talk about other topics. Then the conversation took a turn on to that health topic. I still didn't say anything. I just didn't feel like it. I felt it was irrelevant to talk about my medical adventures.

Why? Back when I saw the people at the party on a daily basis, I would have opened up a long time ago as they were one's who knew me. They knew about my health issues then. But now? I don't know. Did time pull us too far apart? I'm not sure, I promised to email some and stay in touch. We'll see.

Things change, but they don't really

Last night I was lying in bed listening (with a tiny bit of insomnia) to the heavy rain come down and realized that I wasn't concerned that the roof might leak. This is a significant change, there were a few years where I would dread every forecasted rain storm and even make a point not to be home in case the roof did leak.

When we bought the house in early 2005, we knew we needed a new roof. We had some ice dam issues that first year which caused some ceiling damage too. We had the roof replaced in the summer of 2005. On New Year's Day 2006, I was working in my office upstairs and heard a drip. The roof was leaking in my office. We found a new roofer who would come that day and did some repairs. A few trips by the roofer and several hundred dollars later, we no longer had any drips but I had learned to hate rain. It would stress me out. What if the roof leaked again? We couldn't keep spending money on the roof, we had to pay for other things - a furnace, driveway paving, etc. I was stressed for every storm.

Last night I was not stressed by the rain and I started thinking. I knew the roof could leak at any time. This does happen sometimes. Roofs do leak - during hurricanes, or when big debris lands on them, or with ice dams, not just in regular rainstorms. But I wasn't concerned.

Last week I had my annual mammogram and physical and I wasn't stressed about cancer issues. I was stressed about other health issues on my never ending list of new medical issues. Have things changed? Not really. Just because I was not stressed about cancer cooties, doesn't mean the concern they may reappear has disappeared. It never really does.

After my first cancer diagnosis, I learned to despise the words 'but with your medical history we need to be sure...' Every little medical blip put me to the front of the cancer line. Eventually, my stress settled down and I wouldn't be as concerned about every issue. Then another cancer diagnosis, totally unrelated but very stressful, came along and I returned to the front of the cancer line for everything.

With two cancer diagnoses and three years of waiting for a clean mammogram, my stress level is finally settling down. Maybe my breast cancer is not going to come back but 'with my medical history, they always need to be sure'.

So last week, I wasn't as concerned that they might find cancer cooties related to my breast cancer as it has not been as problematic in the past year. In fact I passed last year's mammogram and with a second clean one this year, I was feeling pretty comfortable with it and wasn't freaking out that they might find something else during it.

Its the other cancer issues that cause me stress but that doctor isn't until July. I have another thyroid ultrasound in July to see if they can figure out what is the 'detectable but too small to biopsy' thing is that is hanging out where my thyroid used to be. So I think I have just deferred my stress for a different doctor appointment.

I can still stress about my mysteriously caused heart rate issues but that doesn't look like cancer. It could be caused by my thyroid levels being messed up but it doesn't look like cancer. I'll have my echocardiogram in a few weeks and learn more then. I'll save more stress for then.

So things did change, the roof didn't leak and my mammogram was clean and I wasn't stressed. I have learned that I can always find something new to stress about with my health. And with 'my medical history, they need to be sure'.

Did Cancer Make Me Sick?

I have always had more medical ups and downs since my first cancer diagnosis at age 19. In my 20's I had a benign lumpectomy and a burst ovarian cyst. In my 30's, I had another burst ovarian cyst and knee surgery after a bad day of skiing.

In my 40's, I have had fibroids that died off and created a massive internal infection which resulted in a hysterectomy, a second cancer diagnosis, another benign lumpectomy, my gall bladder removed, degenerating disks in my spine, sprained ankle, possible high blood pressure, another knee injury (on my formerly good knee), and tennis elbow.

I also have a few pesky after effects of cancer including lymphedema, early menopause as a result of chemo killing off my remaining ovary, and shoulder issues from breast cancer surgery. Also, a lifetime on synthetic thyroid hormone to compensate for the removal of my thyroid at 19.

So am I more prone to other health issues now that I have had cancer twice? I was talking to my therapist yesterday about how one issue is never very isolated in the human body and everything is really interconnected in unexpected ways.

Take the example of a sprained ankle - so you limp, which puts strain on your back because you walk funny and maybe puts extra weight on your other leg which might aggravate some previously minor issue. Or one medication can cause side effects which leads you to take something else to handle them.

If I look at my health - would I have been healthier if I hadn't had cancer? Or would I have had all the other issues? I have never really been an adult with out cancer so I can only conjecture as to what my adulthood would have been like.

I am not trying to regret the past or rue what has happened but am merely curious as to what I would have been without cancer. The one thing I do know is that cancer gave me lots of doctor appointments.

Why does our health make us write?

But first, a minor detour:

I blog. There are probably 1,000,000 other people out their blogging about their health? There are some who are very good and there are some who are very bad. There are those who meant to blog and startd out with 'Today I have another big scary doctor appointment. I'll fill you in later on what they told me' and we are left hanging with no more blog updates - did they give up their blog, did they lose their internet connection, did the scary doctor give them good news, did they get hit by a bus, did they die (it would be nice to have some sense of completion here), or any other number of reasons? But we would like to know and never will.

Some blogs are funny like Baldylocks (watch her new video on the right!) or Babs (I want a Jillie if I ever have to deal with this again) and allow us to see the humor in all this crap we call cancer. Some are heart wrenching - like Emily - she's too young for this. Some just show us the human side of our health and getting our lives backtogether - like Linda. Some are just plain enjoyable reading - like Debbie or Whitestone. And some are inspiring like Jothy. I can go on and on and on. I read any number of blogs each day. (This is one of the many reasons the internet has become a giant time suck for me.)

I also read the health sections of CNN and the NY Times regularly. I find some writers more inspiring than others. Sometimes they write about an ailment that I don't have - yes there are some I do not have. Today I am inspired by both Elizabeth Cohen who writes the Empowered Patient for CNN and by Christopher Hitchens, a contributing editor at Vanity Fair. Elizabeth writes today about why she writes her column - because of the issues she went through after the birth of her child. Christopher writes about his feelings with his diagnosis with what appears to be late stage esophageal cancer (he never says what exactly his diagnosis is - this is my non medical interpretation on what I understand are the facts as he states them).

For whatever the reasons we write or means to write, it allows us to express our feelings as well deal with trauma, stress, our failing bodies, our repetitive trips to the kind doctors who send us off on multiple medical excursions that usually include the words 'its might be a little uncomfortable' or 'you will feel a small pinch' or 'hold still and move as little as possible for the next sixty minutes' (and then your nose itches).

We write because we need to reach out to the outside world and say 'don't forget about me'. Perhaps we also write to inspire others. Or to just say I'm still here and don't plan on going any time soon.
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Well, today we are back in southern MN. I slept well last night and am on my own today - which we know always leads to trouble. My friend went to work. I am at her place by myself. We are having her father and his new wife over for dinner so I do need to cook and stuff but this is my to do list I sent to her at work, in no particular order

1. Figure out the damn tv again - every time I shut it off I have to figure it out again.
2. Finish messing up your kitchen - she thinks I'm rearranging it. (she said I could)
3. Finish waking up - not sure if that will be before or after #2
4. make lemon curd - I found the whipped cream attachment for the mixer. maybe make some pureed berries to go in the layers of the trifle.
5. Roast vegetables for soup - worst case, you can't borrow a blender, what do you think the whipped cream attachment would do to the soup? (And find the damn soup recipe we saw in a TV show on line so it might actually be edible.
6. Weeding - do you have any gardening implements that would help with dandelion removal or should I just search the garage? (No she has clippers only.)
7. Go for a walk to the arboretum
8. Nap
9. Do some work.
10. Finish my blog before noon.

So far I have finished #10.