Are You Blogging for the Cause?

Are You Blogging for the Cause?

This post may sound much like my opening post, but I have created this post to link to the web-site to promote Invisible Chronic Illness Awareness week and the 5 day free virtual conferences with 20 speakers, which runs September 14 - 18, 2009. To learn more, go to http://www.invisibleillness.com/ thank you for your support.

My name is Laurie. I am a 46 year old mother of 4 children and 3 cats. I have Fibromyalgia. One of the most mis-understood illnesses that I am aware of. Many people will even argue that it isn't even real, including some doctors. This can be very frustrating at times. Those of us with an invisible illness such as fibromyalgia often hear people saying things like..."You don't look sick"..."You must have a low pain threshold"..."Why can' you just take some tylenol or ibuprofen and push through it", just to name a few.
When we do come across someone who has heard of fibromyalgia, they try to be understanding, but most people think that fibromyalgia is just chronic muscle pain. It's much more than that. This is the reason I my blog URL is titled "fibromyalgia-morethanapain". It's much more.
Fibromyalgia, like many other illnesses comes in varying degrees. Some people have a mild form that consists mostly of deep muscle pain, and a sense of just not feeling well. These people can usually push through it, and are successful with some of the current treatments. I have found, that this is usually the case early on in the illness. Others, like myself have a more debilitating case of the illness. I have progressively gotten worse over time. I finally had to give up my career and go on disability, which is difficult.

Many, like myself, also suffer from many other symptoms and illnesses that come along with fibro.Of course, deep muscle pain, migrain headaches, insomnia, sleep apnea, restless leg syndrome (RLS), depression, anxiety, nausea, gastroesophageal reflux disease (GERD), irritable bowel syndrome (IBS), constipation (side effect of many pain medications) weight gain (from fibro and a side effect of some medications) hot flashes and profuse sweating alternating with episodes of chills that feel like they go down to the bone, increased sensory perception (a heightened sense of light, sound, and smell which can be very annoying), sensitivity to changes in the weather, gradually losing independence by needing medical aids such as canes, leg braces, shower seats, inability to get in and out of tub by yourself, loss of balance, short term memory loss, decreased cognitive skills, tremors, a sense of "just not feeling well", like you have the flu without the fever. Some people can't even bare to have fabrics touch their skin. The sheets on their beds hurt them and their clothes hurt their skin. I am sure I have left something out, or there are other problems that people suffer from that I am not aware of yet.

As you can see, this illness goes much further than the general public are aware of. Many people have been mis-led by the commercials that the pharmaceutical companies air. They show a generally happy, vibrant looking person, complaining of muscle aches, and then telling us that they were successfully treated with whatever drug they are tryng to push. This makes our cause, trying to raise awareness of this illness, that much harder. Yes, the symptoms of fibromyalgia can be treated in some people, but most still suffer from many of the problems that I have listed above. The best thing any of us can do for ourselves is research. Search the internet, medical journals, and talk thoroughly with a physician that is trained to treat fibromyalgia or whatever invisible illness you or someone you know suffers from. Be your own advocate. It is your body, and you must demand proper medical care, and take a pro-active stance in your own treatment. No one knows exactly how bad you feel as well as you do. We know our own bodies better than anyone else does. If you are recieving treatment, and you feel it is not working, research alternative treatments and discuss your options with a qualified medical professional.

How do I deal with my invisible illness? I maintain HOPE. I research my illness and treatments for it. I print out the information I find and take it to my doctor to review with me. I follow my treatment plan religiously. And, on the days that I feel that I just can't handle one more second of the pain and the sense of just not feeling well, I pray. I pray and ask God what he wants me to do with my invisible disease. Why do I have it and what is my purpose? I believe it is to help others to understand and find hope.

Please, if you are reading this, and you know someone with an invisible illness, do them a favor and research their disease, learn what you can do to help them and make their lives a little easier. Help them by understanding and lending them an ear that will listen, and a heart that will care. It would mean the world to them.
Soft Fibro Hugs to all.
Laurie D.

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Sat. Sept 12.

Hello. I guess this is where I start to track myself and post what is going on and things I've learned. For the most part I will just name each post with the date, unless something particular happened that day.
I didn't get much sleep last night. Yesterday was a gray, chilly, rainy day, and it took a toll on me. I was in excruciating pain most of the day. Even the medication that I take on as "As Needed" basis for break-through pain didn't help. I did very little yesterday other than start this blog. I was up and down all night from the pain.
I did get a few hours last night, and I woke up this morning feeling horrible again. I had some breakfast, and went back to bed for about an hour. I had to get up at 9AM this morning to get my son up (he was going to help his grandparents today). It took a few hours, but eventually I started to feel a little better, and was able to get my kitchen straightened up. There wasn't much to do. (I finally got through to my family that if they rinse their dishes and put them right in the dishwasher, or on the counter "neatly" if the dishwasher is full, it makes it much easier on me.) I was able to go out and run a short errand (10 minutes), which is rare. I seldom drive anywhere by myself anymore. I either go with my husband, or I let my son drive (he has his learners permit and it gives him the experience). So I would say the morning was a success for me.
I did start to get really tired by noon, so I layed on the couch and watched TV, took my 1 o'clock medications and fell asleep on the couch until about 3 PM. When I woke up, I felt horrible again. Today is a gray, dreary, humid day. Not hot, not chilly, but damp. The humidity really gets to me. It makes me feel very sick. I also sweat profusely. I usually carry a dish towel around to wipe my face and neck off. Regardless of how I was feeling at 5 o'clock, I had to push through it. My father was going to take me to the market, and this is the only time he had available to take me. Thank God that I am now home. The only thing I have to do  now is take a bath (which doesn't take as much out of me as a shower does) and shave my legs (which is difficult to do, the bending and twisting is not easy to do, I am not as flexible as I used to be). Then, all I have to do is relax..... All in all, I would say this was a successful day.
Just to give you an idea of my daily schedule, I've listed my normal routine and medications below.
I get up at 5AM every day. I take my medications religiously. I have to take certain medications at different times of the day and so many hours apart. I have to take Protonix on an empty stomach, at least 1/2 hour before eating, so I take it then. I also take Wellbutrin, and Methadone (for pain) at that time.This also works out well since I have to wake my 17 year old son up at that time for school during the week. I usually go back to bed until 6:30 when I have to get my 11 year old up for school. At that time I eat breakfast with him and take vitamin suppliments. I take a multi-vitamin, Omega 3 fish oil, folic acid, magnesium, B complex and Vitamin D. I have to take the fish oil and the magnesium 3 times a day. I take my next dose of methadone and suppliments at 1 PM, and then at 9 PM I take methadone, Cymbalta (I am tapering off of it), suppliments, and Sinequan (for sleep). The two "as needed" medications I take are Roxycodone (for pain) and Xanax (for anxiety and panic attacks). It's almost a full time job to remember everything I take, and what time I take them. I have a medication case that has the days of the week, and 4 boxes for each day. I seperate my medications and load the box every Saturday night. It makes it much easier. I just have to open the case and take what is in there at the prescribed time.
As I continue to blog, I will not bore you with all the details of what time I took what meds and every little detail of my day. I will just note the weather, how I feel and anything that I had to do that takes energy for me. I will also at times fill you in on some past history, so you can get an idea of what I've been through, and for how long. Also, I will let you know of any information I learn or any web-sites that you might be interested in.
For example, I have a Facebook account, and I love to go on the National Fibromyalgia Associations group site on Facebook. It's a great place to vent, and to find support from others with Fibro who understand what the other is going through. I have also learned alot about suppliments and alternative treatments by reading posts from other people. Of course, after I read about something, I go and research it and then talk to my doctor before implimenting anything into my routine.
Well, I've blabbed enough for now. Very soft hugs to all my Fibro and normal friends.

Forgot to mention - Liability Waiver

I should have posted this to begin with, but I didn't think of it until later.

I want to make it perfectly clear that this blog is not intended to replace or mimick the advice of a lisenced physician. I am not a doctor, physician assistant, nurse, therapist or any other lisenced practitioner.

This blog is not intended to solicit any products or to promote or disuade anyone from using any certain products, drugs, suppliments, etc. of any kind.

Any comments on this blog mentioning any medications, suppliments, or other products used for Fibromyalgia are not meant to replace the advice of your doctor and are not necessarily the same as my opinion on my blog.

I would like to ask any distributors to please NOT mention any specific product that they may be trying to sell on this blog. This blog is not meant to solicit sales for anyone's product.

Any advice or suggestions you see here on this blog, please discuss with your doctor before trying to impliment them into your treatment plan. What works for me, may not work for others and  vice-versa.

If you have a product that you would like to advertise please do so legally and properly, and please do not use the comments for your own advertising purposes.

Remember, I am just a person who has been diagnosed with Fibromyalgia as well as other medical conditions who is trying to promote awareness of the disease, offer a place for support for others with Fibromyalgia, and to track my own progress and/or regression.

Thank you for your understanding.

Life with Fibromyalgia.

As my description says, I have decided to start this blog to raise awareness about Fibromyalgia (FM). What is a Fibromite? It is a slang term for someone with Fibromyalgia. I am a Fibromite. I have a very severe case of FM that has left me disabled. Many people have been led to believe that Fibromyalgia does not exist and it's "all in our heads". Others have been mis-lead, by commercials for drugs that are used to treat Fibro, into thinking that Fibro is just a matter of muscle pain that is easily treatable. For some people this is the case, but for most Fibro is much more than that.
Fibromyalgia causes severe deep muscle pain and painful "trigger points" throughout the body. This pain can at times be excruciating and nothing can be done to aleviate it. Many days, I feel like someone is trying to "snap" my bones in half. I ache all over, all the time. Even though I take regular prescribed doses of pain medication to treat the constant pain, and another pain medication for more severe "break through" pain, I always have some level of pain to deal with.
As well as pain, Fibromyalgia gives me a sense of "just not feeling well", like I feel when I have the flu, only I have no outside signs of being sick. I don't have a fever, but I have the chills and cold sweats that I feel when I do have one. I feel nauseas most of the time, but rarely vomit. I have dizzy spells, feel weak in the knees, and sometimes I get this sense of a mild "electric shock" feeling that runs through my head and I can hear it in my ears.
Constantly feeling sick and being in severe pain is very frustrating and cause alot of stress, anxiety, and depression. Fibromyalgia also causes Irritable Bowel Syndrome (IBS) and GastroEsophageal Reflux Disease (GERD). It is also related to Sleep Apnea and Restless Leg Syndrome (RLS), I have both. I have a C-PAP machine for the sleep Apnea, but it is very uncomfortable, and I cannot get used to wearing it. Many people, including myself, have weight gain from FM. Also, I've gained weight as a side effect of two of the medications I have been on to treat my pain and depression. However, doctors highly suggest maintaining a low, healthy weight to help with FM. It's a bit difficult to lose weight when you are taking medications that induce weight gain.
Fibromyalgia is usually triggered by some other underlying problems. Such as viral diseases or trauma. I have Epstein-Barr, I've been treated for Lyme's disease, and I have the Hepatitis-C anti-body. (Thank God I don't have the virus). I also have Herniated discs in my cervical and lumbar spine, bulging discs in my lumbar spine, Degenerative spinal disease, degenerative joint disease and arthritis. All of which also cause chronic pain. I have neoprene knee braces for both knees, and walk with a cane. I have to use a shower seat to take a shower along with my husbands help to wash my hair and back. If I take a bath instead of a shower, he has to help me in and out of the tub.
Fibromyalgia is a silent disease. If you look at me, other than my weight and using a cane, you would never know I was sick. This is the case for everyone with FM. Some days can be worse than others, some days you feel fine, almost as if there is nothing wrong with you other than a few aches. Usually the weather affects how you feel. Chilly, damp, rainy days are the worse. Today is one of those days. I have been in excruciating pain for most of the day. I took my pain meds and have found a bit of relief. Just enough to get this started. Sometimes, the pain varies from hour to hour and not just day to day. I never know how I am going to feel when I wake up. This makes it difficult for me to make any definite plans with anyone, to do anything. Many people see me as unreliable, because they don't understand this disease. Unless you, or someone you know has Fibromyalgia, it is difficult to understand. That is why I have been doing research on the internet and talking to other "Fibromites" to learn more about what I am dealing with. This is also why I decided to start this blog.
I have a very strong faith in God. After praying about why I have this, and what I am supposed to do with it, it came to me to start a blog to help raise awareness of this disease.
I will try to post everyday if I can. If not, at least a few times a week. I will post how I am feeling, what the weather is like, what I am eating, what medications I am taking, what happens when I go to my doctors appointments,  and any information I come across on the internet or when talking to others with Fibro.
If you have found my blog, and you have Fibromyalgia, please comment on how you feel, and what works or doesn't work for you.
Soft hugs to all my current and future fibro friends.