Up and Down, Again

Everyone has ups and downs in their life, especially with their health. Or maybe I have more ups and downs than the average person.  Okay, maybe my health has been on a downward slide for a while few years now.

However, I realized the other day that I was actually feeling pretty well for the first time in quite a while. I mean my back has been sore but the rest of me has actually been doing okay. Its kind of nice actually. And it makes me think how long its been since I felt that well.

I had been feeling as if I was over-medicated in some ways for the past few years. I changed my pain management doctor and had reduced some medications over the past six months, with the help of my new doctor. I also finally am on a new medication for my rheumatoid. Finally, I think I am finally healed from my knee surgery. I think I also had a case of the flu in mid December (but I had gotten a flu shot so it wasn't that bad.)

All of those combined were apparently wearing on me.  But now I feel pretty good. I was considering talking to my husband about going for a walk with him this weekend. But that didn't last long.

For the past couple of days, I realized I have been feeling pretty well. This morning I had a lot of energy. I even was planning my social life for once. After the gym today, I went to the library. After I left the library, I realized I had to go pick up my prescriptions (again). All of a sudden I was exhausted. I didn't even have the energy to bring in the empty trash barrels. I dragged myself into the house and ate some food which helped. But now I am lying in bed. Probably for the rest of the afternoon.

Tomorrow will probably be similar. Up and down. If I get a fairly good night's sleep, there will be more up than down. But overall I am feeling better mostly.

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.

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.

You Know You Are Unhealthy When....

Your calendar is full of medical appointments and you never get to see your friends.

I used to work with a woman who told me that I was unhealthier than an entire floor at the local hospital combined and she didn't even know about my cancers .

But you really know when you are unhealthy when you are in a room full of people with cancer, mostly stage IV, and they consider you unhealthy. That is what happened to me yesterday.

I'm just trying to keep my sense of humor through all this.

That little evil voice

After years of medical crap behind me, I still get those nasty niggling thoughts that something new might actually be wrong with me. What is the reason for that 'new' problem? Is it cancer again? No I can't get cancer again. I have had my share already thanks. My body can't take much more please. 

I admit to having some not so good thoughts about pains in the past few days that are leading me to making new appointments with a couple of doctors. This does not make me happy. But sometimes I have to just calm down that little evil voice that causes me so much stress. But since its a Monday morning I have to wait a bit to call in to make appointments because everyone else in the world is also calling in because they get sick on the weekend too.

Anyway my health management basically consists of quieting the little evil voice whenever it speaks up. Is there special health insurance for that? There should be.

What Do You Do When You Don't Feel Well?

I guess on the short term when I don't feel well I stay in bed or on the couch. I sit around doing a lot of nothing. And eat and drink what I want. Or what I feel will make me feel better...

If I don't feel better I call my doctor eventually... If I think its that important. I hate calling the doctor. I will not go to the ER unless I am (literally) dripping blood.

I often pretend I am feeling well when I may not be. Because if I didn't do that I would spend entirely too much time sitting around.

But today I am not feeling that bad. Even though I painted part of the living room yesterday. I mean I am tired and soon I will get my act together and take a shower and get dressed. I have nothing on my calendar until 1 pm today. So I can be lazy for a bit.

However, one cat is not feeling well. I am not sure what to do because he can't tell me what is wrong. He clearly is not feeling well because he isn't walking much, he's moping, he's not eating, he's not drinking much, and he's just sitting.

He went out Tuesday night (to my displeasure). He did not appear until yesterday late afternoon. He came out and walked around a little bit and went back to sleep near the foundation of the house. I went inside and made him a quiet little space with his food dish, water bowl, litter box, and favorite pillows. Under protest, I brought him in and put him in there. He immediately jumped up on the table so I put his pillows there. He stayed there for a few hours and used his litter box. Then he came back out to the living room and slept on the sofa for a while.

This morning he was sleeping downstairs on the futon. I brought him some water which he didn't appreciate. He did come upstairs to eat a little and then has been sleeping again. He doesn't want attention. He protests when I pat him. He insisted on going back out - I hoped he was going to be a bit more energetic but he's not. He sitting back by the foundation again.

Damn. I think he needs to go to the vet. But at least its not me going to the doctor. He clearly is not feeling well.

I'm Not Unhealthy Enough

As I expected the Social Security Administration does not think I am unhealthy enough to receive disability benefits. I did not expect to be approved the first time I applied. According to them since I can walk and lift up to ten pounds I should get a job. They understand that I have degenerative disk disease, depression, rheumatoid arthritis and fibromyalgia but they are all being treated to a level where I should be able to work.

What they missed is that all of these ailments are treatable but they missed the one that isn't treatable: fatigue. Other than a good night's sleep, which helps me for a good part of the following day, there is not much else you can do for fatigue. I do exercise, which leaves me with good mobility and range of motion, so my body is physically tired to help me sleep. But I rarely sleep all night. And the good mobility and range of motion allows me to move around better than most people with my ailments.

Last night, we had house guests arriving late, I feel asleep on the couch at about 9 until they arrived around 1030. Then after everyone settled down I went to bed and it took me at least an hour to get to sleep. I kept waking up and finally got up around 630. I know I will be tired later but I'm okay for now... until I need to lie down for a few hours this afternoon. Tomorrow I would like to sleep until 9 am but I doubt that will be possible.

Anyway, now I need to file an appeal with Social Security to see if I can eventually receive benefits. As I said, I did not expect to be approved now. I expected it to take up to two years and its only been less than three months. (Proof that the wheels of the government can move at a relatively normal pace.) Now to find a lawyer. I think I have the name of one and will start there.

Its been a long ten years

I used to be a healthy person, really. Those of you who have known me for more than ten years know that. But for the rest of you I need to reassure you I was healthy at one point.

One of the big reasons we are selling our house is that we bought it when I was working full time in Boston. I needed the easy access to the city. I will never work full time again, nor will I ever work in Boston.

We bought this house in February 2005 and moved in. We got married in May and then my health went (I really do not believe that my marriage played any part in my body's decision to go to hell in a hand basket).

That August, I was home alone waiting for my husband to come home from work so we could leave for a long weekend when I started experiencing intense abdominal pain. So painful, it took me ten minutes to reach across the bed to get the phone. My husband had a new office phone which was saved in my cell phone which was far away - across the room - so I just called 911 for an ambulance.

It turned out I had fibroids and one had died off and caused a massive internal infection which put me in the hospital on IV antibiotics and ended up with a hysterectomy and home on medical leave for six weeks.

A year and a half later, I was diagnosed with breast cancer which lead to three surgeries, chemo and radiation. Then my gall bladder was removed. Then my back started hurting. And lymphedema, rheumatoid arthritis and fibromyalgia.

Now I am looking toward to retirement and a healthier body. If that is possible. Could I ever be healthy again?

Aging or health issues

Today I volunteer at a local conference. I have to be there shortly so need to leave asap (and its 6:13 AM as I write this). Its an annual conference for my professional life. I have volunteered there for several years. Maybe 7, maybe 9? I can't remember any more.

But this will be the last year. Getting up so early is now difficult for me. And being on my feet for a few hours isn't going to work either. Usually I stay for most of the conference but this year, I'll probably head home after the morning keynote speech.

Yesterday I had a doctor's appointment as a follow up for a test where I had not so good results. The doctor said some of the issues I experience could just be part of aging. But I have more tests to confirm this.

So my question for myself is aging part of my problems these days or are my limitations due to health issues? I always blame my health issues for any problems I have and not aging. I don't consider myself as old, but I could join AARP at this point. The majority of my health diagnoses have been accompanied by 'you are too young for this'. Maybe my age is catching up to my health.

What if life didn't revolve around cancer

Maybe you healthy people out there can weigh in here. I look at my email inbox, my Twitter and Facebook feeds, and everything I touch it seems, and they are all full of cancer, fibromyalgia, and rheumatoid arthritis. I feel like I live in a world full of cancer, fibro and RA.
But don't other people live in a world outside of cancer, fibro, and RA? Everyone has different stuff filling their life. My stuff seems to be focused on my health.

All the blue stuff on the right is my health. What if I didn't have all that blue stuff to fill my life? Maybe I could do other things. Travel, adventures, hiking, a full time job, and not go to the doctor? That would be a nice life.

This is mild RA?

Egad! Yesterday I had a follow up appointment with my rheumatologist. One of the many questions I had for her was what did she consider my RA to be - mild, moderate, or severe. I was somewhat surprised to hear her say - it was mild. Really? I feel like crap and have several areas of my body that have pain and swelling as well as some other issues.

I have to admit that RA is not my only ailment that causes aches and pains. I do have a couple others. And since I was diagnosed with RA and fibromyalgia at the same time so I am not sure which pains are attributable to one or the other and then there is all that osteoarthritis crap too.

On the plus side both my rheumatologist and the physical therapist at the gym yesterday told me they thought I was doing very well managing my health and my range of motion was good.

But that doesn't mean I feel that well all the time. So today I took a pain pill already and am headed out the door for another day.

Another vacation picture. Maybe I'll keep posting them until I bore everyone.

I blew out my flip flop

Yes it really happened. We went to Sanibel Island for a week which is why I haven't been blogging about me much. And the first day we got there we went down to the beach in our flip flops and stood in the surf and I really did blow out my flip flop.

It was a wonderful relaxing time. And our tenth anniversary. Since we got married, my health has tanked. Let's review the last ten years of my health:

2005 - Massive internal infection due to necrosing fibroids which led to hospitalization and a few months later a hysterectomy.
2006 - I was fairly healthy, for a year.
2007 - Breast cancer diagnosis in May followed by two surgeries, chemo, and ending the year just before Christmas with another lumpectomy.
2008 - Radiation and gall bladder surgery. And my back started causing a lot of pain.
2009 - Back MRI and diagnosis of degenerating disks
2010 - Lymphedema started and treatment for my back. A badly sprained ankle with a chipped tibia and other longer term issues.
2011 - Back treatments and injections began. And I got tennis elbow and developed Raynaud's.
2012 - PT for my tennis elbow and more back injections and procedures. And diagnosis of RA and fibromylagia.
2013 - Osteoarthritis in both knees with synvisc injections. All sorts of fun with RA issues.
2014 - More RA issues, a few colds caused by low immune system. Dry eye issues from RA
2015 - So far only two colds including an ear infection, more lymphedema, and some evil dental work.

But we are still happily married and we are still speaking to each other.. My husband does put up with me and all my ailments.

Standing up to the idiots

Okay I finally have a real resolution for the new year. I feel I can sum it by saying 'standing up to the idiots'. What I mean by this is that I no longer feel the need to politely step aside and keep my mouth shut when idiots try to tell me what to do.

With my health, I get lots of  'advice' on how to 'cure' myself or to rest up so I can participate in an activity. Now I feel the need to stop being polite and to speak up and politely tell them to be quiet. For example, if I have a back procedure, it is not going to cure my back. Its going to relieve some pain for a while. I repeat, it is not a cure. There is no cure for me. I am stuck with my health the way it is.

My goals are to slow progression of my RA, keep my fibromyalgia under control, and hope there is no cancer reappearance. I think I have real expectations for my health.

The idiots don't understand. I don't get to go to a lot of events and do things that involve much standing or walking or much of anything. Their frequent advice on maybe resting up ahead of time doesn't work for me. If I do too much, I pay the price by resting for a few days to recover.

It is time for me to stand up to the idiots. Maybe I would do better if I consider it educating them.