My Health Complicates Everything

I have too many ailments. Combined they interact and cause all kinds of problems. Normal people can have knee problems and then surgery to fix them. Me? Not so much.

I hurt my right knee skiing in 2001 and had arthroscopic surgery to fix as much as possible. My right knee became my bad knee. After surgery, the surgeon said if it ever stops locking up come back and see me again.

In 2015 I fell in our backyard and tore my left ACL. My left knee became my bad knee and my right knee became my good (or not quite as bad) knee. I then started over stressing my right knee which wasn't happy. In the fall of 2016, my right knee started locking up so I went back to my knee surgeon to talk about that.

Yesterday I went back to my knee surgeon who has been following me for both knees for the past year or so. And here's the bad news.

There is something going on with my right knee which causes it to lock up. It freezes and causes lots of pain. I feel my knee click back in place after a couple of minutes and the pain stops. I explained to my doctor that its not the aching pain that causes the problem its the locking and pain that I am concerned about. (Its not fun when it happens.)

Normal people would have the surgeon go in and clean up any tears that are causing the problem. He thinks its a piece of meniscus that sometimes sticks up and jams my knee. But with my medical history of rheumatoid and osteoarthritis, he is concerned that it won't heal well and I will be left with more problems.

I have to go for a second opinion. I can't wait. I just want my knee to stop locking up. It hurts like hell when it does that. My too many ailments make it difficult for me to be treated. (Never mind my medical allergies as well.)

Okay, I Haven't Been Blogging About Breast Cancer

I just don't blog about breast cancer as much as I used to these days. Why? Because I like to pretend it will never come back and bother me again. That is the honest answer.

When I was diagnosed with breast cancer, I lived the all breast cancer all the time channel. Slowly over time, I managed to tune out for bits and pieces. Now I am trying to pretend cancer will never come back and bug me bite me in the ass again. I am pretending because I can tell you that with cancer twice in my life there are not many chances it won't come back again. The odds are not with me.

Since breast cancer, or the mid 2000s, when my body started developing so many bullshit  ailments, I have found that it is possible that once you have cancer, and even if it doesn't kill you, no one wants to talk to you about any potential research. They also try to pretend they do not feel sympathy for you. They actually pity you because you are pretty untreatable for normal ailments.

I am not depressed. I am really annoyed that my ailments suck up so much time out of my life. I would like to pretend I am healthy but its not going to happen.

I think my real diagnosis is 'cynic' Or more likely bullshit cynic. But its not cancer.

I Am Aggravated

My body is not cooperating. It keeps on bringing areas to my attention that are not cooperative, i.e., causing pain or other discomfort. I am not happy about this. I am already in PT for one area of the body that has expanded to a second area. I am going back to the knee doctor on Monday to talk about my formerly 'good' knee which is causing way too many issues. My 'bad' knee isn't going to be a good substitute for it.

Also, my fatigue levels are not doing me any favors. I was so tired this afternoon that I didn't put away the groceries - except for the most perishable - and left them for my husband so I could go lie down.

This does not make me happy. The roller coaster of cancer is bad enough, actually it probably the worst. But the fatigue and pain roller coaster isn't much better. I am not coping well. I am whining.

And it snowed twice this week and we are due for more snow Monday and Wednesday of next week. This makes me less happy and more aggravated. Its time for my body to suck it up and get back in lie.

Wallowing

Recently I have been wallowing a bit too much. A few years back (2010 to be precise) I blogged about my wallowing rule - 3 day maximum. I have said that I have been whining but really what it is is wallowing.

What is the definition of wallowing? (since it is such a 'common' word. Most people probably haven't considered it since some word test back in high school):

wallow
verb (intransitive)
1. (esp of certain animals) to roll about in mud, water, etc, for pleasure
2. to move about with difficulty
3. to indulge oneself in possessions, emotion, etc: to wallow in self-pity

See? Definition #3 is exactly what I mean.

I think I have been wallowing in self pity, or the stress of more medical ailments.... I am not sure which one I prefer. If you add in lack of sleep and fatigue, ta da! You get wallowing.

After blogging yesterday, I realized I have been wallowing. I need to change my focus and be more positive. That has been hard to do when I haven't been getting enough sleep, been very busy with craft shows, Thanksgiving, house guests, concussion, and stress, depression, and anxiety, and new medical ailments. (But otherwise I am a very healthy person).

So my goals are to do less wallowing and do more positive things. Today are my first steps:

• I am meeting a friend for lunch and a little shopping.
• I am going to research CPAP machines so they aren't a looming mystery (causing stress).
• I am going to fit more fun into my life. 

Being home and not having the benefit of going to work and seeing other human beings, I find I can easily let myself get depressed and then stressed which means anxiety. This is not a good combination. 

Now that we have been here for almost a year, I need to find more things to do to keep my sanity. I might breakdown and go to events at the senior center (even though I am too young to join). But I will pull my positive attitude out of my back pocket and stick a smile on my face to rejoin the human race.

More Ailments

So yesterday I blogged about my stupid sleep test, CPAP machines, and other whininess. I wrote that I have a new ailment, and what's another ailment. But seriously, another ailment? I don't really want another ailment. In fact, I am kind of sick of being sick and having ailments and more ailments.

Honestly I just want to stop having ailments, be a healthy person, and and have a life. I mean what do I do now? I go to the gym three times a week. I go to doctor appointments and PT now. I don't go to work. The only other places I go regularly are the library, grocery store, and knitting group.

I would prefer to do thinks like go to the beach, go hiking, go skiing or snow shoeing, garden more. I just feel like whining today.  And my car was sliding around in the snow.

I did my sleep test with the CPAP machine. The tech was happy to show me how much smaller the full face mask was that I got instead of the older bigger ones. I don't care. I felt like I was back in the hospital after surgery with the cannula and a combination of when I had an endoscopy and had to deal with that damn tube down my throat. Needless to say, I wasn't comfortable. I couldn't reach over and have a sip of water when I wanted.

I am not looking forward to when my damn CPAP arrives and I have to use it. Whine over. For now.

Thoughts on Coping

I was talking with a friend today. She is having a nudgy little problem that is driving her crazy. She doesn't like nudgy little problems that drive her crazy. She asked me how I do it and cope with everything.

My reply after that, with some deep thought, is:

• Exercise
• Whining
• Prescriptions
• Bitching
• Ice packs
• Complaining
• Chocolate (preferably dark with cashews or pecans)
• Over eating
• Heating pads
• Under eating
• Substance abuse (just kidding)

I admit I haven't had the best week but I'm still here. Monday I was exhausted and in pain. Tuesday I was in pain. Wednesday I was okay but sore after PT. Thursday, its still morning but I feel okay, so far. 

Pain is no fun and its been way too popular this week. One of my many doctor appointments on Monday changed around some of my pain meds. But its still too early to see if that is helping me. So I will refer to my list of options above on how I will cope. But in the meantime, I might need an ice pack and/or a pain pill. 

Stress is Bad for My Waistline

This isn't a good week. (I swear I do have good weeks, just not right now.) The reasons why it isn't a good week is that I had an MRI Monday night so I was up way too late - meaning after midnight. Today I have a deep cleaning at the periodontist. This means they will inject Novocaine and then scrape way under my gums. I expect I will have soup or scrambled eggs for dinner. Then tomorrow night I have the sleep lab so I don't expect to get a good night's sleep again. I know I whined blogged about this earlier this week but I want to whine some more.

Yesterday I needed a two hour nap to recover from Monday night. I also needed too many snacks. Today I think I will probably be grumpy. I plan on eating lunch before my appointment which probably means some kind of fast food which is bad. But I think if I have some food in my stomach I will probably handle the teeth scraping better. (My dentist has told me this several times - eat a good meal before dental work. Having food in your system makes a big difference.) Also I probably won't be able to eat for a few hours after between sore gums and numbness.

When I am stressed I find myself stress eating. I know I am doing it and have tried to turn myself towards fruit instead of fattening food. But its just too many categories. When I am extremely stressed (think cancer diagnosis level of stress) I stop eating and actually lose weight. I need to lose weight but I am happy I am not that stressed and am at the whining stage.

I just need to watch what I eat and get through this week. Then I'll stop whining.

Stop Comparing

When I was diagnosed with breast cancer, I quickly learned every person's cancer is different - even if they have the same diagnosis. (This is why it is so hard to treat.) I learned not to compare myself to anyone else. In every support group, even if we had the same diagnosis, we learned how different all are.

I get this. We are all different. We can't compare our cancers to each other.

But.... why do I keep comparing my rheumatoid arthritis to others? I have to stop comparing myself. My mother has had RA since 1989 and a friend (exact same age as me) has had RA since the early 2000's. Their differences are striking. My mother was diagnosed when they only treated RA when it became symptomatic so she has many of the deformities and issues common among patients treated according to the old standards. But her health is much more stable than mine. My friend has had RA and has very few problems. Until she retired (for non-health reasons), she worked full time including much business travel and long days.

Me? I struggle with fatigue, pain, and more fatigue and more pain. How did I get to be so special? I try not to compare myself with my friend but I do.

As medical diagnoses go, everyone is unique. It doesn't matter if three people have the exact same diagnosis but because of their genetic make up, medical history, and other issues, each is unique. No two are alike (boy am I glad I am not a doctor trying to cure people). And everyone interprets everything different. Some people might be distressed by a little nausea and others may not think it significant.

The lesson that I need to better learn is that I need to stop comparing myself to anyone else's medical stuff. I am unique and so is everyone else. I just need to focus on this life lesson. I think I will stop whining as much if I did. Everyone else will appreciate that part.

Stupid blood work

I get blood work done all the time, or so it feels. Actually its about every two months for one doctor, every six months (or two or six weeks if there is a medication change for another), and then for anyone else who wants it. Sometimes I feel like there is a vampire who wants my blood.

Yesterday I had to go for blood work for one doctor's appointment next week and for another doctor's follow up request. I can't just go for blood work. I need to plan its so its before my weekly injections. Anyway I got the results this morning.

My thyroid tests are way off. This means my endocrinologist will call and probably want to change my dosage or at least have questions for me since the last time I had this test done my results were completely different than this or from the time before. Think yoyo results.

My CBC is partly okay and partly worse than normal. My MTX levels (the blood work you need with on methotrexate for my rheumatoid) are also partly okay and partly worse than normal. This means my rheumatologist may also make changes when I see her next week. Both changes, if they happen, will require additional blood work to follow the results.

I hate going for blood work. Its complicated (see above). I hate needles. They can only use one arm so options are limited. I have scrawny veins in my elbow so sometimes they have to 'look around'. Or if they wimp out, they use the big vein on the back of my hand - which is painful. Then I get to play the 'let's see what the latest results are' game and see if I need more medication changes. And go for more blood work.

A 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.

Whining about things never really helps so its a non productive waste of energy. I have many other things I could waste my energy on - like going to the gym. That might help lower my stress levels it since I have a cold still again, that's not happening any time soon. That may be part of my problem. I have had a cold or ear infection or flu since the middle of December. And our moving is causing a huge amount of work and huge amount of stress. And more work and more stress.

I could blog about my health - I mean that is what my blog is supposed to be about, not about whining.

Whining is also a pretty negative way of coping. I need to cope positively, not negatively. Once the road to negativity starts, its hard to get back on to the sunny side of life positive side. Its a slippery slope and I need to stay on top of it.

I did blog about coping and sense of humor a few weeks ago. I need to get back on the humor side. I need to laugh at the crap life is dishing out more often. My husband did laugh at my hair this morning - which is helpful after a night of little sleep

One resolution is all I need for this year.

When your body lets you down

It happens to all of us - you reach for something and your back twinges, you get a bad cold, or whatever, they are part of life. But then sometimes your body really lets you down.

This became very clear to me one day when I was skiing about ten years ago. I was having a wonderful time and then I fell on one run. I thought I was fine but some man stopped and said he friend had gone for the ski patrol. I thought he was crazy but since he insisted on waiting with me, he could help me untangle my skis. Then when I put weight on my knee it bent side ways and I knew he was right. I ended up with a torn meniscus and a partially torn ACL which meant knee surgery and the beginnings of knee problems.

My body has since let me down in other ways. I seem to have collected ailments that won't go away. Tennis elbow, lymphedema, bad back, rheumatoid, fibromyalgia, and that cancer crap. They just keep piling up. Yesterday afternoon I got very frustrated with myself. I try to be a normal person and then my body protests.

Sometimes I feel I should be in a geriatric ward some place with all my aches and pains. But then I try to tell myself that I got through cancer twice so I can cope through all this. But its the continued emotional spiral of coping with aches, pains and scars that is difficult.

I haven't been getting enough rest recently. Nor enough sleep. This makes it harder for me to physically and emotionally deal with life. And since we are at the worst part of the chaos of putting our house on the market (which means I will take our toaster oven with us today so it will not be in the way while they take pictures of the house). I will bring it back tonight so we can have toast in the morning and then take it with us again as they show the house. This is on top of the list of everything else I have to do today to make the house picture perfect.

My biggest problem is with everything I cannot do. I can't carry stuff around (one of my doctors told me that I cannot pick up everything after I told him we were moving). I have to wait for my husband to be home to carry stuff around for me. I get stuck and have to wait for help so often. My body is failing me too soon. And it drags me down and I constantly have to fight back.

Okay, enough whininess this morning. I will go back to being positive.

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.

Please stop changing your mind!

The news: saturated fats not bad, trans fats very bad. Now they tell us. Thank you.

Does this mean all old research will eventually be turned upside down and we can eat ice cream and chocolate every day? I find this very irritating. Its just not fair to all of us who make dietary choices now and then find out later they were wrong and we could have ignored the advice.

Actually what really annoys me is that this also happens with medical advice and it turns out whatever procedure you had was completely unnecessary.

But it is the price we pay for progress sometimes. Even though it is irritating.

A big step back in the flabbiness fight

Unfortunately I had a big step back in the flabbiness fight. I really did some damage to my knee (and forgot to blog about it) when I was only trying to water the plants in the back yard and fell when (or because) my knee bent sideways. I didn't break anything but I am now the (not so) proud owner of a lovely knee brace to prevent further sideways movement.

The knee doctor gave me the lovely brace and sent me for PT and said come back in two months and we will see what's going on then. On the good side, I can do my PT at the gym for dilapidated people where I go and not have to bombard my schedule with three times a week appointments for PT. I can go once and get my exercises and then do them when I want, there or at home.. On the bad side, if I don't wear my brace, my knee keeps giving out and I have to wait until I could get an appointment with a physical therapist at the gym.

I will go for my first PT appointment shortly and hope to be able to get back to some exercising. I haven't been exercising and am very concerned about the flabbiness fight. I can't just go for a walk these days. I haven't dared to go to the gym until I saw the knee doctor. And now after speaking with the gym about my knee, their advice was to wait until I see their physical therapist and set up knee exercises before trying too much.

So I am sitting around on my ass too often. I am also closely watching my food consumption to prevent further flabbification. And my knee gives out way too often if I am not wearing the (stupid) knee brace (will I get tan lines from it?) so that I got a second smaller knee brace to wear in bed.

Okay its not cancer, but its a royal pain in the ass. Do I get some sympathy? I can just start whining?

More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.

Table 2. Somatic manifestations of studied rheumatoid arthritis patients.

Somatic manifestations percentage (%)	Patients		P value
	RAF (25)	RA (25)
Widespread pain	100	28	less than 0.001
Sleep disturbance	68	32	0.011
Fatigue	92	52	0.002
Morning stiffness	56	36	0.156
Headache	56	24	0.021
Depression	88	40	less than 0.001
Anxiety	72	40	less than 0.001
Parasthesia	76	32	0.002
Cognitive symptoms	56	16	0.003
Dysmenorrhea	20	20	1
Irritable bowel syndrome	16	4	0.157

RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

What are we whining about?

Today is St Patrick's Day. Although I have some Irish heritage somewhere, we will have corned beef for dinner tonight appropriately. But more importantly there are three more days until Spring. We have had a bit of snow here. This graph shows the snow in Boston. But since we are a few miles west/inland, we probably got a bit more than there.

Around here we are all whining about the snow because we are so sick of it. The most amazing part is how much has already melted and how much has not yet melted. I think we have lost a few shrubs here. I only care about the ones I planted, not the ones which came with the house. Maybe now I can get rid of these.

But now all I can do is watch and wait. I am physically unable do any plant rescues because all that does is make my body hurt. I tried to dig out some of the box wood by the front door. It is all bent over to the ground and clearly some branches are broken. Maybe it will be toast and I can grow roses instead (that would make my day).

Yesterday we had enough melting so I can see the ground near the driveway but nothing green growing yet. We should have crocuses and daffodils by now.

My back is winning currently

I look at the current weather forecast. Another 14-20"+ of snow is forecasted for us between now and tomorrow night. And another storm on Friday and the high temperature on Saturday will be 9 above.

In addition my back is being very bad and is currently winning in the pain battle. I am having problems standing for more than 30 minutes at a time. If I am walking, I can stretch it out a bit. I just need to sit down regularly. It can also complicate things like cooking dinner and doing laundry.

I have a radiofrequency ablation scheduled for my back on April 2. I called Friday and asked to be put on the cancellation list for something sooner because my back is so bad. This is worse than its been for a long time.

The problem is I need a procedure which requires sedation and they only do a set number each day they do procedures - which is twice a week. This is why there is such a long wait. And I already had a delay last fall when my insurance company didn't approve the same procedure on my right SI joint so I have essentially been waiting since August for this.

I am feeling stuck inside. I am going to try to go to the gym. My  husband is out shoveling snow and I am doing him a favor by taking the car out so he can clear out the snow and move the other car around.

While I am working out I also run into the problem of standing and working out. I have to sit down periodically so my back stops hurting. 

So I am whining as my back is winning.

But its not cancer so I just suck it up and keep on going.

Let's go back to the 'why me' conversation for a minute

At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?

We learn through this article that it can have something to do with where you  live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:

And which are the top states with the highest rates of breast cancer?

1. New Hampshire (141.7 incidences per 100,000 people)
2. Massachusetts (135.5)
3. Connecticut (135.2)
4. Minnesota (135.1)
5. Washington (133.9)

I feel so lucky that I  live in Massachusetts with the second highest rate. But wait, I already have it so I don't have to worry. Unless we are talkingal recurrences.

As the article's author writes:

"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."

But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.

So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.

My hyper-focused life.

My life,and my blog, seem to be hyper-focused on breast cancer. Yes I acknowledge in my (Breast Cancer) blog that I have other ailments but I have never changed the focus of my blog even though I have questioned it. I still blog about breast cancer because it is part of my life. And I write about changing the focus of my blog but haven't.

However, I read this morning there is another disease which is more prevalent than the one-in-eight statistic for breast cancer that is tossed around. It is Alzheimer's. And the writer makes a valid point that breast cancer is full of ribbons and magazine articles on it, Alzheimer's is not.

When I first saw the article title I thought she would be writing about heart disease and felt a little pang of reminder that while two cancer diagnoses don't necessarily keep me as a potential member of the centenarian club, I do have obligations to keep other parts of my body in good shape. It never crossed my mind that Alzheimer's was that prevalent. And its just a nasty way to go.

With that said, my life should not be focused on breast cancer or living with whining about my ever present ailments. I also need to expand my tiny horizons and think about staying healthy to prevent additional, nastier ailments.

A cancer diagnosis kind of makes you take a second thought on long term planning - why am I saving for retirement at this point???? Taking care of myself and thinking about other ailments is probably just as important.

Being rebellious

We all have the desire to run away and join the circus or drop everything and take the day off for fishing/skiing/golf/shopping. I usually go from required space to required space and not whine too much. My life is focused on these places: my job, my house, the hospital for doctor appointments, and the gym with side trips to the grocery store, see my parents, and occasional other events.

Recently I have been feeling over tied to my house and the hospital. I have been stuck at home because of the weather and car problems. I have been at the hospital too DAMN often recently.

On Tuesday morning I have a doctor appointment - where I break in a new doctor - and on Thursday I have a dentist appointment and get some fillings done. I really do not want to have any medical appointments this week or any time soon. Unfortunately the doctor on Monday should probably turn into additional appointments that will give me some relief in some areas.

Between those appointments and a few other obligations I will squish in my job and hope there are no more DAMN snow storms to keep me stuck at home.

What I really want to do is be irresponsible and do something fun. Today we are going out to a fancy brunch for a belated Valentine's. I feel like all we have done this weekend is eat. Tomorrow we hope to retrieve the car from where it broke down on Friday and have no other plans. My inner rebel allows me to think of irresponsible things to do to get outside.

This may include going to the beach. Yes we just had several snow storms back to back but I really could use a walk on the beach. It is not covered by snow because the tide removes it. But the tides are wrong so I need to rethink that. Or I can take my dilapidated body outside and go snow shoeing which invariably leads to pain and whininess.

My inner rebel is going to get me in some kind of trouble with my self I can tell. I'll rebel and do something I really shouldn't and then pay the price with pain and whininess. But I need to do something!