Small Victories and Major Realizations

Think one of the best things that I've done this week is to get some speech recognition software. One of the problems I had in continuing on with blog postings was typing. Typing is very difficult with fibromyalgia and arthritis, however, speech-to-text is not as easy as you think it would be. Nevertheless, I decided to use this technology to help me post more on my blog communicate with other people.

In trying to focus on my own recovery and ways to make life easier, I realized it one of the biggest issues is (and always has been) food. It was so enlightening last night to watch the premiere of the new show “Addicted to Food.” I've known for years that I've used food as a coping mechanism, consciously even. I'm too old and have too many responsibilities to use as a vice stop things like drugs, alcohol, cigarettes, and other are you responsible behaviors area however one irresponsible behavior that I've continue to do is eat in a very unhealthy way. Considering I have diabetes, the way I eat is not only unhealthy, it is deadly. I am very inconsistent about eating; I eat randomly. Sometimes healthy, most times not.

A couple things have prompted this post today. One, as I mentioned earlier, was watching the show “Addicted to Food” last night. Then there was sitting in the family dressing room in Target today while my daughter was trying on her size 2 pants and getting a look at my thighs in the mirror…while sitting. Oh boy, not a sight I would recommend for the faint-of-heart! Then there is the almost constant pain in my hips, knees, ankles, and feet. Hard to know what is caused by the fibromyalgia and what is due to carrying around 240# on my 5’4” frame! I am still down from my highest weight. And, this is not really about weight. It is about feeling better!

As I sat and contemplated this, I absentmindedly grabbed a handful of GoodnPlentys (one of my favorites). I was chewing some in my mouth and looked at the ones in my hands. I thought to myself, are these worth DYING for?? Well, that was a little too abstract for my sugar-addled mind to fathom. So, I imagined someone had a gun to my head and told me if I picked up the GoodnPlentys, they would shoot me. It’s funny, but that made sense. It sunk in, and I walked to the trash and threw them away.

Small victory.

However, I am not celebrating yet, as I still have the bag of GoodnPlentys. I did not get rid of those yet. The thing I fear the most is the detox…the detox off sugar and simple carbs. The irritability. I mean, I have enough of that with the fibromyalgia as it is. I’m not sure how much more of the bitchy mom/wife my family can take!

So, I will vow to start blogging again, and to start increasing my blog following. I am going to set up a Facebook account soon for the The Petticoat Polymath. I hope to reach out more and use this blog for the reasons that I set it up for initially: accountability, community, education, and sometimes venting.

Thanks all for listening!

Jane

Rededication to this blog

Hello all,

I have neglected this blog recently, and I really miss posting here. Today, I am rededicating myself to this blog. I will find new followers and start following others. I will post on here, as you have seen me do before, my real life (pretty or not!). If you are just joining me, I hope you find something useful here! I am new to blogging, but I am learning every day.

My last blog post was in January and in February I had a car accident...actually, the person who hit me had the accident; I got the injuries! It has been a tough road to heal from the whiplash & associated problems. I am still going to the chiropractor seven months later. Have a lawsuit pending. So, that is about all I will say about that for now.

And, here is a report on Summer: Every summer I have the intention to work with my kids over the summer on their reading and math skills. We usually buy summer study books, flash cards, the whole shebang! And, as you might have guessed, usually the summer flies by and we rarely open the books. This year was similar, however, I decided several weeks ago that it was a conscious decision on my part to not push the kids and let them have fun this summer.

One of the reasons for this is our youngest will behaving surgery again (his 7th) at Shriner's Hospital and will be in a wheel chair for the first quarter of the school year. I wanted him to have some times to play all he wanted; run around, swim, and have fun. He will be having his heel cord lengthened (it is short now due to limb lengthening in 2008...he gained 1.5" in bone length, but the ligaments often don't stretch as well), and part of his femur straightened. So, he will be non-weight bearing for at least 6 weeks, hence the wheelchair. So, he has had a great summer, riding bikes, summer camps, going to the park, playing in the pool, etc.

Our second youngest (the one with autism) has had a great summer as well. In fact, he has grown a lot. He is nine. And, while it might be unusual for a parent of a nine-year-old to brag about these things, it is pretty amazing for him to be able to have done them: 1) he learned to ride a bike this summer. No training wheels, no crashing...he just took off & hasn't stopped since! He has had bikes for a long time now, but something just clicked this summer. 2) He also learned to tie his shoes!! He is very proud of that and now has to wear "tie" shoes everyday. 3) He is no longer in pull-up/good-nights at bedtime! Which saves us LOTS of money and him lots of embarrassment! 4) He is starting to play some team sports at the local boys & girls club. And, that is a big deal for a kid on the spectrum.

The grandbaby has grown by leaps & bounds. She is walking, running, laughing, and doing a little talking. She is funny and happy! The teenager has moved back to the town we lived in for 13 years prior to moving to this one (3 years ago) and moved in with a long-time family friend so she can go to school (community college) there since she took & passed her GED this spring.

Lots of changes and adjustments in our family. Fibromyaglia is mostly stable. Was diagnosed with type II diabetes last month. However, I also lost 30# after my diagnosis...still working on losing the rest!

That's all for now. I will try to post some "catch-ups" soon.
Best,
Jane

post-holiday....

Well, it's been a while. I haven't posted because of my own perfectionism: wanting posts to be informative, well-thought out, entertaining (i.e., perfect). So, today I am just regurgitating in type. What the hell.

I am so tired. I am sure I could crawl in bed and sleep for a week. I was doing well and then over-did it with the holidays. Now, we had a NICE holiday; some awesome food (courtesy of yours truly). The kids had a blast, baked for days and gave away cookies & bars, we had family over for three different (and amazing) dinners, did the whole nine yards. I don't regret it. But now I am so worn down and sore, I don't know how to get through the day.

When I am like this, I feel so out of control. Not the "out of control" where I am acting crazy, doing crazy and risky things....more like the feeling of driving a car with the accelerator stuck and the car is gaining speed. I feel inept to handle the day-to-day aspects of life: taking care of the baby, the kids, the house, the dogs, and so on.

I sleep as often as I am allowed (when the baby is napping and the kids are at school). But, it seems it is taking a while to recharge my batteries. I guess it is just one more level of acceptance: that I am not the person I used to be and I cannot do the things I used to do.

I guess I should be grateful for the things I can do, because I am more fortunate than lots of people with FM or CFS. But it is still a tough pill to swallow. I feel like a half of a person.

Some days I feel like this....

Do you take enough pills to feel like this? I do. In order to get well, I take prescription meds as well as lots of vitamins and supplements. To tell the truth, I take about 40-45 pills a day...mostly supplements, but probably too many prescription meds...but you know what, I need most of them desperately.

Sometimes I wonder what the hell happened to my body to have broken down like this in my mid-forties. I am better then I was this time last year, and much better than I was this time two years ago. I am beginning to think I will never *be* well, but always *getting* well. And, that sucks!

I don't have the discipline to eat perfectly, exercise regularly, and take care of myself ultimately. Frankly, I wonder how people do it. Most days I barely can make it out of bed to get the kids to school. I push myself through the day. Now I make it through, now, better than I used to...but I am so sick of myself! I am so tired of being tired and unproductive (actually, I am probably more productive than lots of people, but I feel like I am working, still, at 1/2 or 1/4 speed anymore).

Oh, the whines of middle-age...that is probably what this is...

I wish I had written this, but it is a reposting....

A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT ME AND FIBROMYALGIA:

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keeps me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia. Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

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