Wizard of Oz

Fall is settling in, tornados are popping up; it’s that time of year you can find The Wizard of Oz on one satellite channel or another. So grab your ruby slippers and we’ll be off to see the wizard, the wonderful Wizard of Oz! Dorothy wanted to get back home; the scarecrow wanted a brain, the tin man a heart and the cowardly lion courage. What would you ask for? Honestly….what would you ask for? I gave this much thought the other day while waiting out another tornado warning.

Like the scarecrow; “I could while away the hours, conferrin’ with the flowers, consultin' with the rain. And my head I'd be a scratchin', while my thoughts were busy hatchin', if I only had” no pain. Okay, so I changed the words, but think about what you could do if you had no pain! You could take on the world. Like the scarecrow, you can already do that. The power lies within you. With or without pain, I believe we can make the most of our world. Don’t count your bad days, concentrate on the good days.

As for the cowardly lion; “I'm afraid there's no denyin', I'm just a dandy-lion, a fate I don't deserve. I'm sure I could show my prowess, be a lion, not a mouse, if I only had the nerve.” No one feels they deserve the pain of Fibromyalgia. Well, unless you are a masochist that is. And as for nerves….well, I am afraid that’s the problem. I have way too many sensitive nerves. The lion didn’t know what he was asking for. Trust me on this one. I would love the courage to deal with this some days. There are days I want to hide myself away, to hibernate. Like you, I have had courage all along. We trudge on finding the courage to deal with Fibromyalgia. And like that field of poppies, sometimes we just want to lay down and go to sleep, but we do walk on.

The Wizard of Oz told the tin man: “A heart is not judged by how much you love; but by how much you are loved by others.”  I agree with the Wizard on this one. Count yourself fortunate if you have friends, true friends that share your good days as well as your bad days. Take the focus off yourself and shift it towards your friends. You will be happier for it and you may even find yourself in less pain. While the mind is busy it allows you to focus on things other than pain. Keep the mind busy.

Right now, my wizard is my pain relief. However that relief comes; be it the medical community, stress relieving exercises, hot showers or soaks in the tub, sleeping in a comfortable bed, the support and love of friends, curling up with a good book, or writing this blog, I find relief where I can. Like Dorothy, I didn’t really need the ruby slippers; I had the power all along. So keep the ruby slippers on if they make you feel better. Just remember to click your heels. Maybe someday when they find a cure for FMS, we can all look back on this as a dream as Dorothy did.

The Trials of Fibromyalgia

While surfing the net, I found a site that listed current clinical trials for those that suffer from Fibromyalgia. You can take a more active part in your own healthcare by participating in clinical trials. By participating in a clinical trial, you may be able to receive a form of treatment not yet available to the public. The results from these trials may advance medical research helping others as well as yourself. These trials can often help answer questions encompassing Fibromyalgia.

Clinical Trials are available in various states and countries. The following link will allow you to view open trials by category. Each category lists the areas in which the specific trials are available.

Trials available are:

·        Alternative Therapies 

·        Biofeedback and Cognitive Behavioral Therapy (CBT)

·        Fatigue

·        Devices

·        Juvenile Fibromyalgia (FM in children)

·        Medications

·        Non-pharmacological Treatments

·        Sleep

·        Other

·        International Trials

To access the link, please click below

http://www.fmaware.org/site/PageServer?pagename=research_clinicalTrials

Trials and tribulations befall us all, so why not undergo a trial that may benefit you or another person suffering from Fibromyalgia? A clinical trial may not be for you, then again, it may be just what you needed and you never knew it. I look back on a clinical trial for Lyrica that was done at the local University Hospital a few years back. I would have found relief from the majority of my pain a year sooner. I think I will check into a trial. Couldn’t hurt…well it might, but then again, progress is never painless. 

Life is like a box of chocolates, you never know what you’re gonna get!

Repetition For Emphasis

Recently I posted in one of my blogs, that I was fortunate as I have an understanding employer. Let me rephrase that:  I thought I had an understanding employer, with had being the operative word. I also mentioned you should discuss your Fibromyalgia with your Human Resources Department. That is difficult to do when your job covers being the HR representative.

It seems every change of season; I have painful fibro days that restrict me. This is normal for me and has been for several years. When I was diagnosed with Fibromyalgia, I took in a pamphlet and some articles off of the internet so that my employer could better understand what I was dealing with and how we could work around it. I asked that we just reduce my hours somewhat when I needed to. There would be weeks or months that I would be fine. After a year or so my Fibromyalgia migrated to another part of my body. Now I suffer from FMS mostly in the upper part of my body. (We won’t mention the OA or Spinal Stenosis in my lower back.)  Since the migration, I have found repetitive tasks almost unbearable at times. Lifting heavy or awkward objects aggravate the shoulders and arms. There are times I feel useless, especially when my job entails not only HR, but customer service, managing a stain glass department and at times working in the flat glass division as well. (Let me just say, plated glass is heavier than you think and working in a cold warehouse doesn’t help either.) I trudge along as best I can and try to do the best I can.

A couple of years ago my employer suggested I work afternoons only. I explained that there may be days when I could not work at all as that when I had breakthrough pain, I was in too much pain as no medication helped, and I would make mistakes when in pain. In a business where you have to pay out of pocket for errors you make, I could not afford to be making mistakes in my work. There would just be some days I would have to take off. My pain didn’t have a schedule, it just happened.

Every fall and winter we go through this scenario, when the weather pattern changes, it seems to affect my Fibromyalgia. It’s not so bad when it is a high pressure system, but for some reason a lower pressure system that brings rain with it seems to take its toll. So I was a little surprised when I was met with some resistance today. My employer wanted information from my doctor saying I had Fibromyalgia and how it affects me. (Ummmm….Hello….I supplied you with that information a few years ago and I even brought in a pamphlet and printed information so that you would understand this….(heavy sigh). I called my doctor’s office and their reply was for my employer to look it up online.  (This is not the first time they have dealt with my employer. I think I heard a heavy sigh from the person on the other end of the phone as well.) Ah, here we go again. It seems to have become a yearly ritual. Why do I forget this? Oh, it must be the fibro fog! Maybe my employer has fibro fog as well. Oh well….So we go through this never ending process of explaining everything (again).

The lesson learned? Repetition for emphasis. Evidently you must continue to explain to others just what Fibromyalgia does to your body. Do not get exasperated, the stress doesn’t help your body. Be patient with others and hope that maybe, just maybe someday they will understand Fibromyalgia as well as you do.  

Breakthrough Pain

BTP or Breakthrough Pain has always been associated with Cancer patients. Pain specialists are now applying the term with pain patients that have the same type of sudden severe pain flares. In a recent study published by the Journal of Opioid Management, they found that non-cancer patients suffered from breakthrough pain more than those with cancer. The trouble with breakthrough pain is that nothing helps. The prescribed pain medication does not work, hence the term: “Break-through” as the pain breaks through the barrier level of medication.

Whether you call them flares, flare-ups or BTP, the pain is often severe and debilitating.  It can come on suddenly or when doing certain tasks. Breakthrough pain will usually reach its peak intensity after a few minutes and lasts anywhere from 30 to 60 minutes. The Breakthrough Pain may also cycle off and on for several hours, causing sleep disturbances and quality of life issues not to mention financial hardships. My understanding is that this is different from the pain felt with “end-of-dose failure”. End of dose failure tends to happen when you are on a long acting opioid and it should last for 12 hours, but in some persons tends to last 8 to 10 hours.  As an individual, you have reached your end of dose cycle.

I started keeping mental notes of when I have a flare up. I have since changed some of my work and everyday habits. In order to maintain a quality of life, I have made my work associates aware of what I can and cannot do. I ask for assistance in doing certain tasks that involve lifting or moving of awkward items. When met with resistance I ask them if they would want me to be to work tomorrow or off for a week due to pain. That usually gets me the needed help. Mind you, this tactic doesn’t always work, but it does help on occasion. I am not so inflexible that I refuse to do something (unless it’s way out of my ability). The key is to remain flexible in situations. There are times when you will have to do things that bother your Fibromyalgia. Life is that way. By working with the fibro and your limitations, you will garner respect from your fellow associates and your boss. Even though you may not want to share your limitations with others, it may be best to do so. Speak with your Human Resources Dept., this is one of the reasons they exist.

Home may be a different situation altogether. You may not have the luxury to “not do” certain things. Sometimes you have to be your own caregiver. On fibro days that I have Breakthrough Pain and it affects my shoulders and arms, I cannot fold laundry nor do the dishes. Pacing oneself and getting plenty of rest is all you can do sometimes. This will always affect your relationship with family members. It will affect your quality of life. It will increase your medical expenses. You don’t have to like it, but you do have to accept this. Another thing that must be accepted is that BTP can just happen.

According to the American Pain Foundation; people can experience severe flares an average of twice a day. Their researchers also estimate that more than 80% of people taking long-acting medications for chronic pain experience breakthrough pain.

I had several flare ups this week. I did miss one day of work. The nice thing is my boss understands I can no longer do the things I used to do. Fortunately I have proven to be a valued employee as I am sure most bosses would have found a way to get rid of me by now. I continue to take my prescribed medication. If I did not, I am afraid I would not be able to function as well as I do. I would hate to think what BTP would feel like if I were not on pain medication.

Tell your doctor if you are experiencing Breakthrough Pain. Rate your pain and try to keep track of it. You can help your doctors’ treatment of your Fibromyalgia better by understanding your body better. Communicate with your doctor, your family, friends, co-workers. Don’t become a whiner, do become a better communicator.

What's Your Number?

Reward yourself. I did!

             A couple years ago, I received a small bonus for some work I had done. I was the project manager for some restoration work on an historic landmark building which was damaged in a gas explosion. The damage ripped through the basement of the building finding an exit on the opposite side of the building. The exiting explosion effected storefronts along one whole city block. Those storefronts would become my life for several weeks. I had never been in charge of such a large project before, but I knew I could do it. I was rewarded for a job well done. I had a good crew to work with and I could not have accomplished it without the help of everyone involved. I rallied for a bonus, I felt I deserved one. I came in on time and under budget. I have to be honest; I was looking forward to that bonus. I needed a new mattress set.

The mattress I had was actually a mattress and spring set for a tube style waterbed that had been converted into an air mattress with an air pump and inserts. It was old. The warranty had expired and the mattress would lose air every night. You had to constantly fiddle with the air pump to get the right amount of air pressure. Towards the end of the restoration project I was waking up in the middle of the night AND each morning to a completely flat mattress. I needed a large intake of caffeine to get me through the day.

          If you have Fibromyalgia, you know how important sleep is. Good sleep that is. I am talking a sound, soul rejuvenating sleep. Ambien helps me achieve that along with my new mattress. Okay, it’s almost 2 years old now, but without that new mattress, I think I would be either crippled or nuts. It’s hard to take a vacation, sleeping on a different bed. I used to think I was the princess in “The Princess and the Pea.” I would feel EVERY little thing. I could not get comfortable. (But I think Fibromyalgia makes me a little hyper- sensitive.) I decided to take matters into my own hands. I tried several mattresses out in the stores. Nope, nothing, nada, zip. That is…….until I tried a Sleep Number Bed. Wowsza!!! The great thing was I could set my firmness to a different level than my husbands. Great! I could feel the pressure points on my body being reduced. This just might work. It was far superior to the air mattress inserts we previously had. It also had a trial period, if I didn’t like it, I could return it. Hey, it was worth a shot. When I got my bonus, I decided to buy one. The only thing is, you can try it in the store, but you can’t take it home with you. They have to come from a warehouse. No, I could not pick it up in the store when it arrived. It would be shipped to my home. “WHAT?!?” I cried, “Is there anyway to get it sooner?” Okay, so I would still have to wait a few more days, but yes, I could have it delivered and set up for me. I lived in Timbuktu so it would take a week, seven whole days as opposed to ten.

I have not regretted it, the wait was worth it. I would hate to think of how many more sleepless nights I would have encountered. As it is, any sleepless nights I do have, are not as bad as they once were. I can adjust the mattress easier with the numbers. I can vary anywhere from a 45 to a 75. Just depends on how I am feeling. The nice thing is I can tell immediately now when I get into bed what my number should be. No more fiddling with the controls. I bought the top of the line, sparing no expense. I didn’t really have the money for it, but I made the financing work. Even some hotels are now using these beds. So when I vacation now, I look for a hotel with an air mattress bed. No longer exhausted on trips, I can enjoy them! I can get a good night’s sleep or at least a close facsimile thereof. It may cost a few more dollars per night while traveling, but let’s face it…I am worth it. Repeat after me …. “I AM WORTH IT!”  Very good, now just keep repeating that to yourself when having a bad fibro day. Self esteem can be lowered when you feel pain. Just remember that you can endure it and that you are worth being kind to your body.

This style of bed is not for everyone. It is what I needed. I spoke with someone who had purchased a Sleep Number bed and was not happy with it. It turns out; it was her pillow all along. She could not be comfortable in any bed. So I would like to suggest to anyone and everyone that pillows can make a HUGE difference. Even if you have had the “same style” pillow for years, as you may have well learned, your body changes. Try different pillow styles. My bed is piled with a huge mountain of varying pillows and covered in 400 count Egyptian cotton sateen sheets. Okay, so I splurge on my bedroom. It is my sanctuary in fibro days. I want to be as comfortable as I can be. Yes, that includes a down comforter in the winter months. Am I worth it? Sure am. A person spends 6-8 hours a night in bed on average. That’s 1/4 to 1/3 of your life. Think about it, that’s a long time to be in one room. A very long time, since I realized that years ago, I have always made my bedroom my priority in comfort.

As I am writing this, I am looking forward to crawling into bed tonight. Then again, I look forward to bed each night. It’s been a very hectic week and the weather has been kind of crazy. In fact, on the drive home last night I suspected we would have rain. My barometric body was feeling a change in the weather. You know what that means, another fibro night, but that’s okay because when I finally did fall asleep, it was comfortable. I ended up missing work and being in bed most of the morning as well. Turns out it rained last night off and on, this morning and afternoon as well. Maybe I should become a weatherman. Who needs Doppler radar when your body can forecast it?

Get comfortable; make your room your sanctuary. Invest in a good mattress and pillows.

Sleep well my friends, you are worth it.

Warming Up to the Idea

A few years ago, I was privy to be part of an experimental program at one of the local hospitals. Just a minor routine surgery, nothing big except for: “The Bair Paws” system.  After being asked if I was willing to partake in the experiment, I was placed into a hospital gown I was told I would find very different. Hmmm…it looked pretty much the same. While I was awaiting my procedure, I was plugged into the Bair Hugger warming unit. Wow! This felt really good. I wasn’t cold and I felt warm and fuzzy awaiting surgery. This was awesome. I needed one of these for at home. I was warmed up before the surgery and for as much as I could remember of my initial stroll into the Operating Room. What I didn’t expect, was the wonderful Post-Op care and warming I would continue to receive. No warming blankets for this gal! I always hated waiting for the recovery room nurse to get me one of those and then, I would always want more. Maybe I was just cold blooded at heart. The Bair Paws system not only is a forced air warming system, but it put you the patient in charge of your comfort level. You can adjust the temperature and the air flow of the gown that is right for you. The important thing is that some believe it helps reduce post operative infections helps the body heal quicker.

I think of this now as I wish I had one of these at home during my fibro days. I lay with a heating pad across my shoulders, wishing it would come down around my arms to my fingertips. Okay, maybe the Bair paws system didn’t go all the way to my fingertips, but I don’t think it needed to. The warmth was welcoming and I was so glad I was asked to partake in the experiment. I urge you to check with your local hospitals if you are going to be having a surgery in the future and see if they use this system. Warm is good unless you are in a very humid climate. Warm is also good when you are having a fibro day, week or month. 

http://www.arizant.com/us/bairpawssystem/patient

Forecast: Fog Up Ahead

It was a dark and foggy day…Okay, maybe not dark, but it was definitely foggy. I cannot for the life of me, remember where I put that post it note. You know the note, the note that I am supposed to look at so that I remember what I am supposed to do? Yes, that note. Hopefully I will find it so I remember what was so important.

The fibro-fog obscures my brain and makes it hard to remember so many things. There are days I go to do something half a dozen times before I remember what I started off doing. Racking my brain doesn’t help. My cognitive function seems to be missing, short term memory loss? I don’t think its short term…I think it left and it isn’t coming back! But seriously, ever have one of those foggy days where you start to head down the hallway to get something from your bedroom and when you get there, you can’t remember what it was you went to the bedroom for? You look around for awhile trying to figure it out? Nope, no good, go back to the kitchen and re-think what you were doing. Do that several times and maybe, just maybe, when you remember what it was you started off to do, you won’t be so upset with yourself for wasting time.

It must be awfully annoying to others. I know it irritates the snot out of me. I have engrained it in my bosses head to make notes. This is more for my benefit than others, but hey…it works! I could get writers cramp from all the notes I write myself at work. Maybe I should buy stock in note paper, I could make myself rich. I find myself asking repetitive questions. If only I wrote down the answer after I asked it. If under stress or facing anxiety at the same time the fog is settling in, you can forget me remembering anything. The day is like a big blank slate that has been wiped down and you can’t quite read what it says.

Ask for patience. Ask friends, family members and co-workers to please bear with you during the foggy times. Most importantly, have patience with yourself. Accept that there will be foggy days, sometimes more than others, but there will be foggy days. Try to go back through your thought process one step at a time. Sometimes you can cut through that fog with your low beams. Slowly but surely you will get through it. I frequently try to retrace my steps to get there. Sometimes it works, other times…it is no where to be found. Elvis has left the building, gone from the mind for good. Don’t stress out, chalk it up to a foggy day and just try to establish some routines. For instance, now I always place my car keys in my right pocket. I don’t need to wonder where they are, I just pat my pocket and make a sigh of relief that I remembered to put them in there and didn’t lock them in the car.

The only trouble with having too many routines is that you are not challenging your mind. Do something out of the ordinary, try reading, doing word puzzles, or playing mind games. We need to keep our minds sharp. This will also help us as we age. I have started taking Co-Q10 just recently and have noticed a slight improvement in my memory. Hey, I have seen elderly people with cognitive disorders, I don’t want to be one of them; I have enough trouble as it is. Maybe if I write myself a note I will remember to take the Co-Q10 and remember to keep my mind active, even on the foggy days. Oh that’s what I was going to do…take my Co-Q10! I didn’t find the note, but I did remember!