Happy Holidays 2016!

Happy New Year to all and Merry Christmas or Happy Hanukkah! I hope you all are enjoying your holiday season!

On our end, the holidays are not very holidayish at all. But we are making do.

I got the flu just before Christmas. This meant we hibernated. And packed boxes in preparation for our move next week. I was pretty sick and running a fever over 100 for two days (even though I did get a flu shot) before starting to feel better.

For New Year's, we are having dinner at home just the two of us (which is what we like) and packing boxes. I am taking the car for an oil change and getting my nails done in celebration of the holiday. Aren't we exciting?

Our biggest problems are packing and moving. Its so much work. Every room is full of boxes and more stuff to pack. It is very difficult for me to get too much packing done. I successfully make my back hurt every day. This morning I packed three boxes and now my back hurts so I am taking a break.

The last time we moved, we had a lot more going on. My soon to be husband was mobilized and spending all his time at Fort Drum. We were planning a wedding. And we were house hunting. It was a little stressful. But the big difference was I was healthy.

Now I am not so healthy and packing is much more difficult. I am not allowed to lift things (but I admit to cheating a little bit - maybe that is why my back hurts?) which limits me quite a bit. Its not fun.

So we will have a small New Year's dinner and get plenty of rest so we can continue packing tomorrow.

Happy New Year!

PS We are never moving again. But that's what we said last time we moved.

Is that pain only in your brain?

I have been pondering this question for a couple of days. Some one posted a comment on my blog the other day and asked about this:

"How do you know when some of these pains are not in your head? I have mistook mental discomfort for physical problems."

I have often pondered this question for myself. Is what I feel real pain or is my brain making it up? How can I tell all my pains are real? Am I over treating my ailments? How can I have so much pain? I sometimes run little experiments with myself (don't tell my doctors!) to see how my medications are working and how my pain levels really are. Sometimes I just forget a medication and I often quickly find out what is real and how much somethings hurt. Other times I will delay taking my next pills and see how I am feeling.

I thought about this, hard. I know if someone has a limb amputated they often may have 'phantom' pains. The missing leg still produces feeling of pain even after it is gone. I know there are treatments for this as well.

But I also feel strongly that doctors should never ignore patient's statements on having pains. For years, male doctors often dismissed women's complaints on menstrual cramps. They were proven wrong. But if a patient complains of pains often and a doctor does nothing, you need a new doctor. 

However if its the other way around and the confusion is as the commenter noted above - mental discomfort being mistaken for physical pains - that is a different problem all together. In quickly asking the all-knowing Dr. Google, you can find that it is a recognized emotional issue that causes significant anguish.

In my non-medical opinion, if there is a question as to whether the pain is real or in your head, you would really need to do some personal and medical research, working with a good medical professional who meets your needs. Because even if the pain isn't real, there is still an issue that needs to be treated.

Traveling for cancer treatment

Yesterday while packing wasting time I was watching the local news. It included a story about a first grade teacher who has cancer and needs to go overseas for treatment. She has some kind of liver cancer and has run out of treatment options. In the video she says she is going to Germany for PRRT treatment which costs $100,000. As it is not yet FDA approved, she must pay out of pocket for it.

I was intrigued so I did a little research. The treatment she needs is PRRT or Peptide Receptor Radionuclide Therapy and is for people who have run out of treatment options with certain cancers. Sounds reasonable.

And of course I have a 'but' to go alone with this. The first article I found on it said there is a Level 3 Clinical Trial going on for it in the US and in certain parts of Europe. Then I went on clinicaltrials.gov and found more trials for it in the US, including ones for gastrointestinal tumors and lymphomas and more. I realize that to be eligible for a clinical trial you need to meet certain criteria. So maybe the teacher doesn't meet the requirements for one of the trials.

But if she can participate in a clinical trial, why does she need to pay for treatment? Wouldn't that make more sense than raising money herself (and through her students and other people she knows)?

I am not a big proponent of traveling overseas for treatment that does not yet have FDA approval. (Do you remember the people who went to Mexico for laetrile treatment in the 1970s?) Yes there is the thought that if you are told there are no more treatment options for you wouldn't you want to try anything? But maybe exploring more local options might be a good start.

I could be showing my cynical side again....

Maxed out

Every year it has happened since 2007 when I was diagnosed with breast cancer - we max out our health insurance out of pocket expenses. I just found out when I went to pick up some prescriptions the other day and figured out we hit our max on Dec 11. This is much later than recent years.

I didn't have any surgeries or anything major happen this year - except my knee injury. I had a total of 58 medical visits - this does include eye doctor and dentist - plus an additional 10 or so separate trips for blood work. This is the most appointments in at least five years. And I do hope this is not a new trend.

This is one measure of how (un)healthy I am. I go to the doctor at least once a week. So far I only have 13 appointments scheduled for 2016 - and I am sure this number will grow. In January, I have four scheduled appointments - that's one each week on average. Its a good thing I stopped working so I have time to go to the doctor.....

My medical finances may be maxed out but I think my tolerance for doctor visits is maxed out as well.

My cynical side is showing again.

Was I supposed to climb a mountain or something for some ailment awareness? I didn't. But apparently a lot of people do that kind of thing. You can find countless story about another person who climbed a mountain, ran a marathon, bicycled some long distance or did something significant to raise awareness for an ailment.

How does climbing a mountain help with an ailment? What are you doing on a mountain top that could do anything to help someone with that ailment? Other than let the person with the ailment feel disappointed that they could never do that any more? Please explain.

I didn't do any of that. I would never do any of that. Physically I can't. And emotionally I do not think those efforts are much needed. Honestly we do not need any more awareness of breast cancer. Period. For my other ailments, maybe some awareness could help. But awareness doesn't do squat.

What does help is research and treatment.

If you want to help with an ailment on a big level, raise some money for research and treatment. If you want to make the news headlines for doing something, raise a lot of money, send out a press release and invite the local media.

Or if you don't want to make any headlines and can't afford to spend any money, spend some time with someone who could use help. Is it a ride to a doctor appointment? Picking up their groceries? Mowing their lawn or raking their leaves? Or if you can't do any of that, drop by and chat or call them on the phone.

Skip the awareness crap and efforts, figure out how to go direct to the person coping or to research and treatment. Awareness doesn't do crap.

Keeping my sense of humor or coping?

Sometimes people ask me how I cope. I don't really know how I cope, I feel like I am muddling my way through life. Is that coping? Does that count?

The only thing I know I do do is that I keep my sense of humor as much as possible. If I didn't have a sense of humor, I would probably be insane.

My husband helps with this. He allows me to laugh at a lot of different things. And often at myself. At the right times. But he is also supportive of my ailments (even cooking dinner and doing laundry when needed) so I can live with that.

He likes to make fun of my morning hair. He tells me when I look like Yertle the Turtle when my hair sticks up. He tells me I am yertled. Daily. I can be in pain and achy and sore and he laughs at my hair. Sometimes he just says 'don't touch your hair, look in the mirror!'.

Right now I am recovering from the flu and we are into the last two weeks before we move. (And that rheumatoid and fibromylgia and bad back are so helpful during this.)

We finalized our countdown of what needs to be done room by room before we move. Its daunting. But we will get it done. Some how. And crack jokes as we go. Is that coping?

Ailments on a holiday

Today is Christmas and for Christians around the world it is a special day. Other cultures have their own special days - which should be respected just as much as the special days for your beliefs. Holidays are not a day to argue about which belief is better. Its a chance to relax and enjoy ourselves with our families.

It is not a shopping day nor a work day (unless chosen by the employee). Unfortunately the one thing that does not ever get or take a holiday is an ailment, especially a chronic one.

I have just a few ailments and am also recovering from the flu. After a night of insomnia (when I tracked Santa for a bit of fun on noradsanta.org) as well as lasting flu symptoms, I am a bit tired and possibly cranky as well.

I wish ailments would take a holiday from time to time. Shouldn't we be able to feel decent for a little while from time to time? It would be nice.

If you know someone with ailments who is not able to get out and spend much time celebrating the holiday, please take a moment to give them a call and chat for a while, even suggest a quick visit. (But never unexpectedly show up!!!! Us ailment people have a tendency to hang out in our pjs for longer than most and take naps.) Our ailments are persistent and we can use the company. So in the holiday spirit, take a moment to visit with those who would appreciate it most.