Know What I Mean?

Hello all!

In case you are wondering where I have been I am right here. My fibromyalgia has been acting up something awful the last week or so. I made a promise to all of you a while ago that when my physical or emotions are acting up that I wouldn’t bring it here and share it with you. So that’s what’s happening in my head and in my body these days. I could use some prayers if you have any laying around if you have some to spare.

I hope to be back to normal very soon because mostly I’m just over the whole thing. Know what I mean!

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She Has A Laptop and She’s Back

Merry Christmas from the Hunter Clan 2012

Merry Christmas from the Hunter Clan 2012

 

Today is Wednesday December 26th 2012. It is also the day I promised my blog would return from the deep dark black hole of never never land. I received the laptop I have wanted for so long and am now among the many laptop owners of the world. Therefore I no longer belong to one of the many people in the world who no longer have a laptop of my own. Now all of us in our house own a laptop so I’m not sure now what I’m gonna start complaining about now. But I’ll come up with something good. I can promise you that. I spent 5 months griping about this so it’ll be a good one!

I’ve had a hard time this December with my Fibromyalgia. It’s been really strange. The pain has been mild. The fatigue has been increased to a degree. I’m not sure what’s been up with that. I’m suspecting it’s been the cold weather. I have lost 30 pounds since the summer and am still in the process of trying to lose although I am at a standstill. I also have Seasonal Affective Disorder which also adds to my depression. So I have a feeling that plays into the fatigue a lot as well. I’ve moved into taking a Klonipin each day as well. I’m now glad that Christmas is over because that means that spring is on it’s way. Does anyone else feel that way about Christmas? All the busy busy busy and go go go and travel travel travel and cold cold cold is all too much for me. Anyone else feel that way? I’m mostly just glad when it’s over and life can get back to normal. I’m a normal kind of girl. It’s just all overwhelming to my body. Overwhelming is not something I can take for too long.

Michael and Lauren have been home for a couple of weeks. It’s been really nice. I love how well they are getting along. Lauren is leaving Friday to go to Pennsylvania to spend a week with her college roommate. I will miss her. Michael still has two weeks at home. They both finished their first semester of college learning a lot about how to live alone, how to make the transition of high school friends to college friends, maturing into adulthood, being responsible for themselves, how to study on their own without me or daddy prompting them and about how to budget their slim finances. Those are a lot of lessons to learn in just a few months. But they are learning as they go.

Well, we are all freezing in a blizzard in Ohio. I wanted to get out and shop some today. But the weather says I’m staying in so I’m staying in. I’m hoping to use some of the quiet time today to work on some blog updates here. So if today is your first day here feel free to kick back and look around for a bit. Since I’m finally back things will be changing. If you are finally coming back with me here, WELCOME BACK! I look forward to making things a little more pleasant around here. I’m glad to be back! I’m glad to be back WITH YOU!

Variations of Fibromyalgia Treatments – What Works and What Doesn’t?

Yesterday was an exhausting day for me. That’s why things were quiet here on The Journey. Today is a bit better so I am baaaaacccckkkkk. Part of the problem is that yesterday were MIchael and Lauren’s final full day of school. I was very emotional about it. I remember each of their first days of Kindergarten and now they done with their final regular day of their senior year. They just have to go a couple more times to take 3 exams they weren’t exempt from. So in addition to working around here between rest periods I decided to torture myself by looking at their baby books. DUMB IDEA!!! I don’t recommend it on a day like yesterday. It’s getting more and more difficult to claim denial now. Their graduation party is tomorrow and graduation is one week away. UGH!!

Ok – enough of that. You came to read about Fibromyalgia. I thought today I would talk about some of the different treatments that I have tried. Maybe I’ve tried something that you haven’t thought about so we can keep learning from each other. Just like the other day feel free to leave comments about things that you have tried – whether they’ve helped or not. What doesn’t help you may help someone else and vice versa. Plus remember that each comment you leave will enter you in the Fight LIke A Girl tee shirt giveaway tomorrow. By the way, the drawing will be in the evening since we will be covered up with a double graduation party most of the day.

Of course I think I’ve tried every anti-depressant and pain medicine available on the market. The combination I’m taking now seems to be working. In addition to Fibromyalgia I also have chronic depression and anxiety disorder. I’m just gonna list the things I can remember that I’ve taken. Here we go: Wellbutrin, Paxil, Prozac, Neurontin, Lexapro, Cymbalta, Lyrica, Ambien, Trazadone, Celexa, Elavil, Zanaflex, Robaxin, Ultram, Vicodin, Percocet, Nucynta, Morphine, Fentanyl, Actiq, Effexor, Pristiq, Zoloft, Darvocet, Xanax, Ativan, Demerol, Elavil, Lortab. Ok I think that’s all I can remember. I’m sure there are more. Sometimes the side effects were too much for me. Sometimes they stopped working so we had to change. Sometimes I just got no benefit from them at all. It’s all part of the “game”. It’s just a fact of life. Finding the right combination can take a while. Just be patient and try what they doctor suggests. If he’s a doctor you trust then all he’s trying to do is find the right magic formula for your system.

I’ve also had various procedures done. I’ve had trigger point injections, which is a lidocaine injection to the trigger points bothering you the most. Sometimes it works, sometimes it doesn’t. Sometimes it works short term and sometime you get a lasting benefit. I’ve had nerve blocks. I’ve had Radio-Frequency Ablation, which is when certain nerve endings are carterized to block the pain signal. The first time I had it done it worked beautifully. Because the nerve endings regernerate themselves the procedure has to be repeated. When I had it done for a second time a year later it wasn’t as successful. I’ve had Botox injections – not for wrinkles – but for the expectation of pain relief they discovered helped people who suffered with headaches.

I’ve been treated by a chiropractor. I’ve had massages. I’ve used electrical stimulation to relax muscles. I’ve gone to rehab a number of times for therapy. I’ve had acupuncture. I’ve done Yoga – which is really nice and does work for me when done consistently.

I’ve used various homeopathic remedies. I’m currently using Advocare – which is really helping a lot. I use Spark and the BioTools products daily. I can tell a real difference in my fatigue levels and pain levels when I don’t use them. I was really impressed with the benefit I got so I signed up to sell it for the discount. I’d be glad to send you some samples if you would like to try it yourself.

Spark comes in 7 different flavors

BioTools – Two products in one package

As I said earlier, it can take a long time to find the magic formula for you. Try not to get discouraged – I know that is so hard. But there is no healing pill you can take and get better. Fibromyalgia is a lifelong battle. Eventually you can get to the point where YOU control IT instead of IT controlling YOU. Don’t give up! Because that’s definitely not gonna do any good. Keep trying until you find the right thing for you. My current medication formula, massage, Advocare and pacing myself is working for me.

Now it’s your turn – comment! Tell us what you’ve tried! What’s worked for you? What hasn’t? I’m taking notes!

Making Fibromyalgia Easier to Live With

Once you’ve learned about Fibromyalgia and helped your family/friends to understand it, then it’s time to find out how to make changes to your life that will make it easier. Some things that I suggest will be common sense and some of them may be things that you might never have thought of. Feel free to leave any suggestions you have when you comment (for the giveaway).

First and foremost you need a doctor you can connect with who really cares about finding a way to help you. It takes a lot of doctors to find the right one. I didn’t really find the right one till about 7 years into my Fibro battle. I had to “kiss” a lot of frogs to get to my prince of a doctor. I found my doctor at a Pain Management office. I’ve been going to Dr. Nwofia for about 9 years or so. Finding a compassionate doctor is not easy but when you do find them hang on tight and work your medical plan TOGETHER! You have to trust them. That means giving up some control. But if they show themselves worthy of your trust that won’t be hard to do.

Medication is a must. Some are helpful and some are not. It’s a long process to get there. What I’ve found is that using certain products available over the counter is crap shoot. You might end up with a perfect score or you might fail miserably and walk away with nothing. On average very few items available OTC help me. But about a year ago I came across a product line called Salonpas. The two items in the line that help me are their pain patches and their massaging foam. I first found them at Walgreens but now we buy them in bulk at Costco. They have large patches that you can cut up and put on different places. The bulk package is small patches. They stick very well. Each patch works for 8 hours. A lot of times Salonpas works when my narcotic pain medicine doesn’t. I use the foam for places that a patch wouldn’t stick – like in my hair line or on my foot/ankle. We all use them around here. They’ve come in handy for the kids for soccer as well.

The last thing I will talk about (even though I could go all day on this topic) is my car. About the time we moved back to Tennessee and I began getting serious about finding some answers I was driving a Toyota Camry. I started noticing that my low back and my knees were hurting badly when I would get in/out of the car. The movement of bending to get in/out was putting pressure on my tender points. We decided to go car shopping. I was on the hunt for the perfect comfortable vehicle. I found it.My Hyundai Santa Fe is the perfect height. I just slide in and slide out. There’s no bending or stretching. A lot of my pain issues have been solved by getting a car that sits up off the ground more and is level with my backside. It takes a lot of pressure off my low back, knees and ankles.

Another product that we bought a few years ago that has made an incredible difference is a Cuddle Ewe underquilt. Oh my word!! It’s like sleeping on a cloud. That morning stiffness you have that takes at least an hour to shake off – GONE! Sleeping is much more pleasant. It is incredibly comfortable. They aren’t cheap but worth ever red cent you have to scrimp together to buy it. I wish we had discovered it much earlier.

My next goal to solve some of my real issues is to buy a house with no stairs. When we bought/built this house 6 years ago the stairs weren’t really an issue. But in those few years they truly have become a problem for me. I can see in the future that they will only be more problematic.

I’ve also discovered that using a laptop instead of a desktop computer is easier on me. I’ve noticed in the last couple of years that sitting at a desk is very hard on my back. With a laptop I am able to sit comfortable to work.

Now I’m ready to hear some of your ideas. Don’t forget that leaving a comment enters you in the drawing for a free purple Fight Like A Girl tee shirt on Saturday. Pass it on – this is information everyone could benefit from.

Helping Our Family/Friends Understand Fibromyalgia

Today’s topic is about what our families can do to help us and how we can help them to understand the road of Fibromyalgia. I realize that many who fight the fibro fight do not have the benefit of a supportive family. That breaks my heart. I have a wonderful support system – from friends to family.

As you found out from me yesterday you know that my Fibro “woke up” after I had my son in 1993. So, sadly, all my children have known is me being sick. That really breaks my heart. I work hard to try to be as normal as I can for them. Somedays that is harder than others. But my husband has always supported me. The key to building a support system is information. Unfortunately, because Fibro falls into the realm of an “Invisible Illness” it is hard for people to really grasp how we feel.

My amazingly supportive husband and children:

 

Some of the ways we can educate our family members is having a family meeting and explaining what’s going on inside your skin and let them all ask you questions. You can send them links to websites that explain the symptoms and what it is like for you living day to day. Be open and honest. If you are having a bad day, tell them. Because they can’t see how sick you are the only way they are going to know is if you tell them. Consider reading up on and following the Spoon Theory. I posted an entry a year or so ago about this theory. You can follow the link to that post. It is a great visual way to let those around you know how you are doing. There are links in that entry that will take you to the original Spoon Theory site – which will provide a huge system of information and support. There are wonderful websites available full of information and ideas about living day to day with a chronic illness.

Finally one way that I wanted to end with is consider writing your family/friends a letter. You can find a lot of sample letters online. But here is a great one. I’ll post the link to the site. But for the sake of concluding this topic I will copy and paste the letter here.

In closing don’t forget to comment so that you will be included in the giveaway on Fibromyalgia Awareness Day Saturday May 12th.

LOVE LETTER TO NORMALS

by Claudia Marek

Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in.  But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own.  Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need.  The best time to do that is when you are not upset!

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 (thought they might have wished they could on really awful days!!)  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 my symptoms I don’t want you to think I’m making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn’t help over half the people who tried them.  No matter how happy the people in the pictures look, there’s still no miracle drug available.

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 — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse.  Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake.  I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational.  I know I am, but I can’t help it when it’s happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

A Week of Fibromyalgia Information Ending With A Giveaway

Fibromyalgia is a mystery. There are a lot of different aspects to this chronic illness. It is a chronic pain and chronic fatigue illness. There are nearly as many different symptoms as their are cases it seems like. The primary symptoms are widespread overall chronic pain, chronic fatigue without exertion and sleep problems. Other symptoms characteristic of Fibromyalgia include dizziness, migraines, IBS (Irritable Bowel Syndrome), tingling, numbness for no apparent reason, skin irritations, Fibro-Fog, stiffness, muscle spasms, painful menstrual cramps, Anxiety, nerve pain, stabbing pain…. The list is just endless at times. A lot of people seem to lump it in the category with arthritis, which really isn’t correct. The way I have explained it is Fibromyalgia is to the muscles what arthritis is to the joints. I call them cousins.

There are just about as many different beliefs on what causes it as there are symptoms. I could list all of them but I’m just going to tell you the explanation that I’ve come to believe is true. There are no tests that tell you you have it. It’s basically a process of elimination. They test you for everything they can think of. When all of those tests come back normal and you still have all the symptoms then they finally tell you that you have Fibromyalgia. What I have learned in my 18 years of battling with it is that it seems to be hereditary. I have a large family on my maternal side. In each case where a girl is the firstborn that girl ends up with it eventually. I believe it sits dormant in your genetic makeup until some traumatic physical event “wakes it up”. And then That’s all she wrote! For a number of people I have come across it has been a car accident, a fall, childbirth (as is my case) or even a traumatic emotional event. It seems to be something that “shocks” the body. It’s like this event occurs and shakes things up physically and the fibro is triggered and becomes active.

Now the medical field has a bunch of different explanations for it but I believe my simple explanation seems to narrow down to a laypersons terminology. It seems to affect women the majority of the time although a small percentage of patients are also men. It’s even known to affect children.

That is all just a brief run down of the tip of the iceberg of Fibromyalgia. There are a whole lot of medical terminology I could tell you – none of which I would explain properly – none of which either of us would really understand. I’m all about the easy descriptions. I’m a visual learner so I like to put things into visual terminology so I can make some kind of sense of it.

May is Fibromyalgia Awareness Month. May 12th is Fibromyalgia Awareness Day. You can show your support by spreading awareness and encouraging further research so that we can get better medications to treat it and bring about clearer answers for those of us who battle it daily. Our support color is purple. So if you see me on Facebook or Twitter you may see my plea for you to wear purple on May 12th to shine a light on an illness little is known about. We appreciate your support.

Throughout this week I will be posting each day a little something extra about the illness. Saturday I will culminate the week by hosting a giveaway. The only requirements for entering is to post a comment each day that you visit – One comment per day please – On Saturday I will pool all the names in “the hat” and draw one for a Fight Like A Girl Purple Tee Shirt. Check out their website. It’s awesome and a wonder source of support and information about a lot of different illnesses. So visit and comment. The more times you comment – the more times your name goes “in the pot” for Saturday’s drawing.

 

A Pledge To Care

May 12th is a day committing to bringing Fibromyalgia to the forefront and raise awareness. As you probably already know Fibromyalgia is something that I deal with every day 24/7 and will for the rest of my life. Starting Monday May 7th I will post something about Fibromyalgia each day culminating with something special on Saturday May 12th. You will find out what that something special is on Monday the 7th.

I encourage you between now and Monday to find out if there is anyone in your family, circle of friends or in your community who battles with this syndrome. I think you will be surprised at just how many people deal with it silently every day. It may be the woman down the street you see wabbling out to her mailbox each day. It may be the co-worker who uses a lot of sick days but never really “looks” sick. It may be the teenage girl in your child’s class who always has such a pretty smile but doesn’t participate in sports and sometimes sits out of P.E. for “no reason”. It may be that friend who you think is unreliable because she is always canceling things at the last minute. It may be that “perfectly healthy looking” woman with the handicap permit hanging from her rear view mirror “just so she can park close”. You will be surprised who we are. Things are not always what they seem.

While you are observing the people around you, think about the pledge pictured here. You may be asked to sign this pledge to care next week.

Consider looking at people in a different light. Avoid making rash judgements about others. You never know what another person is living with in their life.

We will explore Fibromyalgia a bit more starting Monday. Bring and open heart and mind when you come to read here next week. You’ll be surprised at the things you’ll learn.