Letter to Normals (Part 2)

Everyone with fibro has different symptoms. “There is no way to just take a pill to make it go away, even for a little while.”  I take Aleve and I know I overuse it. I know I take more than I should and I know it’s bad for me, but without it there are times I can’t walk, brush my teeth, wash my hair, or even get dressed or out of bed. Aleve barely even helps 30% and barely takes the edge off, but if I take enough it usually helps me function. “That’s about the best I can hope for. “ My rheumatologist will not give me anything stronger, but I try not to take too much Aleve because I don’t want to hurt my body even worse. However, there are times when no matter how much medication I take, nothing helps and there is nothing I can do about it. “That’s just the way it goes. “

“There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better because I suffer from chronic pain and fatigue for which there is no cure.” However, just because I’m functioning normally and seem happy, that doesn’t mean I am not in any level of discomfort or pain. “I can have good days, weeks, or even months.” But I will have fibromyalgia for the rest of my life. There is a certain percentage of people who get fibromyalgia and it progresses to get worse, and I hope I am not in that group. I have days where I feel great in the morning, and then all of a sudden I’m in a lot of pain and have absolutely no energy. I am absolutely exhausted. It can go the other way, too. I have times when I feel sick for an hour or two and then it goes away or vice versa. Just because it doesn’t last or sometimes lasts too long does not mean I am faking it. Like I said, I cannot control the way I feel. When I am in a lot of pain or even just because it is a symptom of fibro, I may get very irritable. If this happens, I will most likely be very quiet. This does not mean I am mad at you or hate you. I am just very uncomfortable. I know if I’m not quiet I may not be very nice and I don’t think you deserve to be treated that way. I’m just trying to cope with my condition in the best way I can. I don’t want it to affect your life negatively by having me treat you in a not-the-best way.

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Letter to Normals (Part 1)

I am so sorry that I have not posted in awhile, but that only means that I really, REALLY needed to post today.

Awhile ago, my friend e-mailed me and told me that she found something on her sister’s friend’s facebook called “Letter to Normals” and it talked about this girl’s experience with fibromyalgia. It is from the book Fibromyalgia:The First Year. (Please Note: I have not read this book, but I have seen it in book stores). We both have conditions and decided to write one for each other to explain our conditions.

If you are having unsupportive family members or just need to keep your feelings in order, then I suggest you try writing one.

There are parts of her letter that are copied directly and those parts are in quotes. I am giving it to you in pieces so that it is not too much at once. Here it is, exactly as I wrote it over a year ago:

There was a letter written by Claudia Merek called “Letter to Normals” about fibromyalgia and she says people can use it as a basis to write their own (what I’m doing). If you are reading this, either you asked to, I feel you don’t understand, you are denying it, you think it’s fake, or you wanted to learn/know more about it for some reason. The first thing to know is that if you have a question about my condition (or really anything for that matter), NEVER ever hesitate to ask me. I would rather you ask than leave something left unsaid. Every fibro book says it’s a responsibility to tell people how you are feeling and what you need when you are calm, but I will rarely do this.

“ Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia though they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine, too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don’t want you to think I am making it up.”  I know you may get frustrated with the unpredictability of my condition, but I get frustrated, too. I did not choose to have it or make it up. I actually consider myself lucky to have fibromyalgia because I went through 2 sonograms, 2 ultra sounds, 3 urinalysis, an EKG, and 13 tubes of blood drawn to make sure it wasn’t anything worse. Any one of those tests could have come back worse and they didn’t. I only had low vitamins and minerals, which is to be expected with fibro. Therefore, I consider myself lucky.

I Need to Clean..

Just like everyone else, I have chores to do and things that need to be done around the house. Fibromyalgia makes normal cleaning and chores seem like torture, at times. When it is difficult to even brush my teeth, how am I supposed to clean?

Here are three techniques that help me get things done:

  1. I take breaks while cleaning. It may take longer to get everything done but I can get more accomplished.
  2. Listen to my body. If I can’t do something today, I will write it on a post-it to do the next day or the day after when I am feeling better.
  3. If I am not feeling well, I take medicine about 40 minutes before I start cleaning so that it will kick in when I am ready to go.

I want to be able to help my mom around the house and listening to my body and taking my time helps me do that. If you want more tips and techniques, I have plenty. Let me know!

What do you do to get things done?

Never Have Another Bad Day!!

If you have not figured it out yet, one of my biggest passions in life is acting.In one of my acting classes a man shared this with us and I have never (and will never) forget it…

He said, “I never have a bad day. Ever.”

What are you talking about we thought? It is impossible not to have a bad day once in awhile. You can’t be happy all the time. Of course, he is not happy all the time…

but the truth is:

NONE OF US EVER HAVE A BAD DAY!

Every day is a 24 hour period of time. If you say that you have a “bad day,” then you are generalizing. There is no one that goes through a day where not one single thing goes right. There has to be at least one minute or second that something goes right which does not allow the whole day to be bad.

At the least..think about this:

  1. Did you get to work/school safe?
  2. Are your loved ones alive and well?
  3. Are you safe and healthy?
  4. Do you have food on the table?
  5. Do you have a job?

If you are still not convinced, think about this:

The majority of us sleep at least some portion of the day. When you are sleeping, you are not even able to make a judgment about whether things are good and bad in life. It is some level of relief. Thus, if you sleep for one hour of the day and then literally everything in your whole day and life crashes down from the moment you wake up…You had an hour that was at least neutral. Promote “neutral” to “good” (“the glass is half full” type of thing) and at least some portion of your day was good. You can not say it is bad because that would not be true.

The truth is:

none of us have bad days.

He said:

“If I have even one good second in my day, then the whole day was not bad.
I may have a bad minute, I may have a bad hour, but I never have a bad day.”

 

Zig Zag and Glee Project

I have been in quite a bit of pain lately and so it is nice to have shows to watch. I could not blog last night because I went out to the movies with my family and we did not get back until late.We saw Horrible Bosses which was actually really entertaining. I got so caught up in the entertainment value that I actually didn’t even pay attention to the artistic aspects of the film, which I often do. I am a film minor so I am usually the person who gets out of the movie (if I didn’t fall asleep) and talk about the cinematography. Many people don’t like this just in case you didn’t know…

Tonight, I am watching Glee Project. Actually, right now, I m watching Glee Project.

For those of you who watch it, I think Samuel and Cameron are wonderful. Actually, when Cameron was in the bottom 3, my mom and I literally cheered when he got to stay.

I do not have much to say today, but please expect a better post tomorrow.

I hope you have all had a great weekend!

My Zig Zag Days

Today is Friday. Wednesday, I was in a lot of pain. Then, Thursday wasn’t too bad. I was achy but it wasn’t a day full of fibro fun. Then, today I am in a lot of pain again.

This is what I call my zig zag days.

I am not having a flare..I don’t think, just a fibro fun day. When I have days that are good in between my bad days, I call them my zig zag days. Then, a zig zag mini-flare is when it is like a pattern of good days and bad days in a pattern.

This is quite frustrating. Sometimes I wish the bad days could all come together so that it wouldn’t be false hope.

However, on the bright side, at least I get a break sometimes.

I hope you all have a great weekend!

Lyme Disease and Fibro..hype or reality??

For those of you who are active on forums and reading blogs on fibromyalgia, you have surely seen at least one post or comment with someone saying that fibromyalgia does not exist and it is actually lyme disease.

Is this true?
Well, I surely do not know.

I was tested for lyme, like nearly everyone else with fibromyalgia in order to rule it out. Needless to say, the test came back negative. I told the rheumatologist and other doctors that I had never had a tick. Ever. There was no way it could be lyme.

Then, today out of the blue I remembered. I was in 6th grade and sitting in the back of the classroom. I ran my fingers through my hair and I felt something. What was it? I tried to run my fingers through it thinking maybe someone threw a piece of paper at me or maybe it was just a leaf. I couldn’t get it out. I tried again and again pulling harder every time. Eventually, I got it out, it WAS a tick. I got scared and tried to throw it on the ground trying not to call attention to myself amidst my panic.

Did all of the legs come out?
I don’t know.
Did I end up getting a bulls-eye rash?
I don’t know.
Could I have lyme disease?
I don’t know.

However, here is what I believe to be true:

  1. Fibromyalgia is a real condition and so is lyme disease
  2. There are people with both lyme disease and fibromyalgia but there are also people with only one.
  3. Fibromyalgia is NOT always lyme disease no matter how inaccurate people claim the tests are for lyme disease.

Do I think, honestly, that I have lyme disease?
Absolutely not.
There are certain symptoms that go along with fibromyalgia, such as the tender points (or trigger points, depending on what you call them), that are not the same as lyme disease. Even though apparently there is new criteria (…sounds like I’m studying for an exam) for diagnosing fibro that does not include the trigger point test according to a fibromyalgia magazine from last year. I do not quite understand why they have taken this out, but perhaps that is a topic for another blog post. Anyway, there are certain symptoms in both conditions that do not overlap so they must be separate, no?

I would love to hear what you think.
Why not leave a comment and share??

The Grass is Always Greener…in reverse

One of my closest friends (We will call her Kiki) from the time I was in 5th grade has cystic fibrosis. We became close friends because I had scoliosis and she had CF so we had to go the the nurse’s office together every day.

For some odd reason, people have mistaken our “diseases” several times. We will text each other and say, “Someone just asked me if I had CF/fibromyalgia, and I was like nope, but one of my best friends does. Haha.”

I have NO idea how people mistake these two conditions and it ALWAYS makes us laugh.

Her mother also has fibromyalgia so she has some experience with it. At one point, they even thought that she might have fibro. (She didn’t. Thank goodness!)

One day we were talking about people who mistake these two conditions. Please note: We are very open with each other and we are very blunt and honest about everything. Nothing in this conversation was considered offensive to anyone involved.

Kiki: I do not know how they could mistake them because what you have is so much worse.
Me: Are you kidding? How could you ever think fibro is worse than CF? You do hours of treatment every day and you are in and out of the hospital all the time. Plus, you are coughing all the time and stuff.
Kiki: Yeah, but I’ve lived with it my whole life. You just got diagnosed a year ago and it is like your whole life got turned upside down. I also don’t have to deal with people doubting my disease. Everyone knows that its real. I know the course of my disease. Yours is totally unpredictable and there is nothing the doctors can actually do to make you feel better.

I had never thought about this. Not about which was worse, but about how her perspective could be so different from mine. I have watched her go through so much with CF and I do not know how fibro could even compare.We had a pretty good conversation about the two conditions. Neither of us changed out opinions but it was a very interesting conversation.

People say the grass is always greener, but I guess when it is in reverse…we’re at least optimistic!

Scoliosis

Before any of this happened with fibromylgia, I had scoliosis.

Scoliosis is a curvature of the spine. It is quite common.I am sure that many of you have had scoliosis checks at your school.

When I was 10 years old, my mom (who is a nurse) was helping me look at my bathing suits. She looked at me intently for a second, and turned me around. She touched my back a few times and said, “Hmmm..” Then, she told me to put my arms together and lean forward. I did it and felt her touching my back on the side. I had a rib hump. I asked what she was doing and she told me that I needed to see a doctor because I might have a condition called scoliosis. She explained to me what it was and told met hat it ran on my father’s side of the family.

Believe it or not, this is going to be the short version of my experience with scoliosis…

Luckily, my mom was the department head for the orthopedic and general surgery section of the hospital so it did not take long to get an appointment. I went to see a doctor that I had met several times previously. They took an x-ray of my spine. When I saw the x-ray I laughed, it looked like I was doing some sort of dance. I quickly realized that it wasn’t funny and when the x-ray was taken I was not dancing so something must be wrong. I had curves a lower curve and an upper curve. They were not too severe and the doctor said she wanted to see me in 6 months.

When I returned, they took another x-ray and realized that my curves had doubled. She measured the curves and they were at the point of requiring treatment. At the time, we were getting ready to move in a month so we planned ahead to get treatment when I moved. I was only in 5th grade, but we still had cliques and popular kids. As much as I hate to admit it now, I was one of them…and I knew that “back brace” was not, by any means, synonymous with “cool” or “popular.”

At the first appointment, I was measured for a back brace. Since I had two curves, my back brace went from my hips to under my arms and all the way around with three straps on the back. It was February 6, 2001 when I first got my brace. It was quite uncomfortable, but eventually I got used to it.

There was a point when I was not wearing my brace correctly. I would take it off or loosen it when I wasn’t supposed. I did this for 2 reasons: 1) A boy I had a crush in made fun of me and said mean things to other kids about me for wearing it. (Stupid. I know.) 2) I just simply did not want to wear it anymore. The result of this rebellious action, led to the doctor increasing the hours I needed to spend in my brace (up to 23 hours) and classifying me as “borderline surgery.” My top curve just so happened to curve toward my heart. The doctor was worried about it curving too much and crushing my heart especially at the speed it was curving. The doctor explained that if I did need this surgery, it would take almost a year to recover. I started wearing it diligently. I did everything to the best of my ability.

I did not need surgery.

In the end, the brace worked so well for me that my x-rays were actually used in presentations and other medical research venues. Apparently, there is a very small percent of people that use the brace correctly and their back never goes back as bad as it was in the beginning. I fall into that percent. Thank goodness!

I am truly, truly blessed.

Although it was not fun to have scoliosis and wear a back brace for years, I am thankful for it. Here is why:

1) It made me stronger. Kids are not nice at that age. Although I was not bullied, it was not easy.
2) I do not think I would have liked myself if I had stayed that “popular” girl.
3) Every experience is a chance to become a better and stronger person, and I took advantage of that opportunity.

I wonder how many other people with fibro had scoliosis first. I doubt there is any correlation, but there are a lot of people out there with scoliosis, too.

Looking Good, Feeling Good

There is a real connection with the way people look and the way they feel both physically and emotionally. There are endorphins that are released to make people feel good similar to the way people feel good when they are exercising.

I understand that with fibromyalgia it is just not possible to put a lot of effort into your appearance every day. I can almost never do my hair because my shoulders hurt too much. Instead, I will try to do my makeup in a way that makes me feel good about the way I look. Sometimes me hands hurt too much and I can’t do my makeup, but I try to do as much as I can. I am trying to learn more about fashion and style and wearing clothes that I feel confident in. Even little things like having your nails polished or wearing a bracelet. Little things go a long way. I try to do little things to help myself feel better. I, personally, could definitely tell a difference because my attitude was different. Did all of my pain go away? No. Did I still feel symptoms of fibromyalgia? Absolutely. However, it did not completely drag me down and cause me to feel more depressed.

There are always little things you can do to feel good. Here are some ideas:

–          Exercise

–          Eat healthier. (Skip the cookies. Try an apple.)

–          Get a mani/pedi

–          Give yourself a facial

–          Wear a dress

–          Apply mascara

–        Go shopping!

What do you do to feel good?

Leave a comment and share!

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