Archive for My Life

Vacation and School

Hi everyone,

I am so sorry that I have been slacking off with the blogging for a couple days.I have been so busy. Yesterday was my one year anniversary with my boyfriend so I have been spending time getting things ready so that we could have a special day yesterday and we did! Plus, on Monday I had my last day at my job before school which is quite exciting to me.

Now I am going on vacation with my aunt tomorrow and will be gone for the weekend. I will not have access to a computer so I will not be able to blog. Boo. I was supposed to go to Europe this summer but due that fell through so my aunt decided she would take me on a little getaway.

Then, I am starting school so I will do my best but the blogs will probably be less frequent than they were in the beginning but it will definitely continue so make sure you keep checking!!

PS. Thanks so much to those of you who have subscribed and commented. I appreciate it so much and I’m so happy that some of you are finding some help through this blog.

You are never alone.

I wish you all good days.

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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!

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.

Workkk

I work as a receptionist at a nursing home.

As with most buildings, it is difficult to control the temperature in all parts of the building. The location of my desk is very, very cold. Obviously, this doesn’t suit me very well with fibro. On top of that, it was raining which is one of my main triggers.

I felt like the luckiest girl in the world because it was raining so hard outside and my boyfriend offered to drive me to work because of the bad weather. I told him I would be okay because I did not want him to go out in such bad weather right after he got out of work, but it meant the world to me that he asked.

Usually, I do not have much to do at work. I went in pain today, and it just so happened that I had paper work and things to do…while my hands were hurting. I was not about to tell them that I was not going to do the paper work because I was in pain as they do not know about my condition. Needless to say, doing paper work with my hands in pain was NOT fun. Luckily, I get to sit down the whole time so the pain in the rest of my body is not a major issue.

What are the challenges you face at work?

Leave a comment and let me know.

Daily Life…

I have had fibromyalgia “officially” for 2 years now. However, it seems that too often I find myself surprised by some of my limitations and I am caught off guard.

Overall, my day was good and I was not in too much pain. This is surprising considering that I woke up several times throughout the night due to pain in my hip, which led to difficulty waking up on time and losing out on a pretty good portion of my day.

Then, I went grocery shopping with my mom. We save produce and the frozen section for last. As with many people with fibromyalgia, the cold and I do not mix very well. We couldn’t have been in that section for more than 20 minutes at the most, but ever since then I have been in quite a bit of pain. I took Aleve but it barely ever relieves even 30% of my pain. Needless to say, I am writing this in pain. Lucky me.

Then, my friend texted me to go for a walk. I do not see him very often so I thought that a walk might actually be good for me. The temperature had dropped so my plan to get some heat didn’t exactly work out as planned. Luckily, he is, and always has been, very considerate of my condition and patient with me. We stopped a few times so I could sit down and rest because it was harder for me to walk. He has been friends with me long enough to know when I am walking funny and that usually is a clue to him that I need a break. Despite the pain, I still had a good time. Hopefully, I will feel better tomorrow.

Family Gathering

I am fortunate enough to have a very close family.

We decided to get together today to celebrate the 4th of July since it will be difficult to get together tomorrow.

I was happy to see all of them, but it was raining. I woke up with my lower legs hurting, my elbows and knees stiff, my hands and back aching..(Side note: a fibromyalgia commercial just came on). Anyway, it was tolerable but certainly not as well as like to feel on a day where I will be sitting in a car for about 3 hours total. Moreover, it was raining which is one of my main triggers so that made it even worse. When we sat down to eat, I just happened to sit close to the foods that everyone seemed to want. I love my family and I love helping them out. However, after serving a number of people for their convenience my shoulder began to hurt a lot. Luckily, my hands were not so bad that I could not use them. On top of that, I forgot to bring my Aleve! Aleve is the only over the counter medication that will work for me.

Needless to say, I will spend the rest of the day laying down, relaxing, and taking it easy.

Movie Night!!!

My brother wants to watch a movie tonight starting at 10 o’clock.
I am like the worst person to go to the movies with (especially with how expensive it is these days..) because I always fall asleep (depsite being a film minor). When it is not going to be over until around midnight it makes it even harder to stay awake..I woke up around 7.
I’m already feeling little cold-like symptoms from fibro and some of me hurts, but I’m going to try to be a trooper and TRY to stay awake. Today the pain has not been too bad so hopefully I won’t have a sudden onset.
Fibro will not hold me back.
Wish me luck!