Archive for May 2012

Why me??

May 31, 2012

If you are like me you have asked that question a hundred times.  Why do I have severe fibromyalgia, why do I have osteoarthritis, why do I have lower back issues,  why do I have constant pain, why do I have to be so fatigued, why did I have to quit my career at a company that I loved, why did this have to affect my family so much, why did this happen to me so my family has to worry about me, why do I have to have fibro fog, etc.

I mostly ask these questions when I have a high pain level that makes my fibro fog increase as well.  When this happens I can’t think clearly and I feel like the weight of this illness is crashing down around me.

When I ask myself these questions I normally think that if someone in our family had to have this illness and suffer so much – WELL, I would rather it be me that anyone else.  I wouldn’t want my husband or children have constant pain and fatigue along with a list of symptoms as long as my arm.  I wouldn’t want my parents, mother-in-law, or brothers to have this terrible, chronic illness.  So if I had to choose…. I would rather it be me.  I wouldn’t wish this disease on anyone!  I am trying to cope and accept this illness, but it is very difficult.  If only I could have one day without pain, or one hour without pain, or EVEN one minute without pain, I would give anything and give God the glory.  Fibro fog is the symptom that I hate the most, but the pain is all consuming and never stops.  I am always somewhere on the pain scale of 1 to 10 – I normally stay somewhere between a 3 to a 10.  A question that my husband asks me frequently throughout the day is “What is your pain level?”  It is like he is my caretaker, but he like to know so he can better help me at the time.  We have been married 32 years and he is a keeper.  He wants to help take care of me the best that he can and tells me frequently that he will always take care of me.  This is very comforting to know because there are people out there that are single or single parents that don’t have the awesome support that I have from my husband.  I don’t know how they cope.  I guess if you have to you just do it.

My husband and I talk frequently about why I have this illness.  We think that maybe it is so we can help others that are dealing with an illness or pain of any kind  in their life.  Sometimes it is all I can do to just take care of myself and then sometimes I am able to get out a little and I will run across an opportunity to help others.  I also blog and post on facebook to hopefully help others and in return it helps me as well.

Please leave a comment and let me know what you think about this and how you cope with the question “Why me?”

I wish for you a low pain day with extra energy! 

Do What Makes You Happy!

May 25, 2012

Life is so busy and can become complicated especially if you have a chronic illness.  I USED to want my house tidy and clean, but I have learned to take care of myself, DO WHAT MAKES ME HAPPY, and then do what I can in the house.  My husband helps as well.  I have plenty that I could do today in the house, but I woke up at 2:00 this morning in pain and couldn’t sleep after that.  At 5:00 when my husband woke up we went outside, sat in our comfortable lounge chairs, enjoyed some coffee, and talked until he had to get ready to go to work.  Then….. I did one of the things that I enjoy so much and is even relaxing.  I watered my flowers, shrubs, and veggies.  Yes, this is something that is enjoyable to me!  Other things I love to do that “make me happy” – just being with my husband and boys, weeding my flower and veggie beds, pool therapy, calling to check on  my Dad & Mom, talking with friends/family or going to lunch, talking with my mother-in-law, making a special dessert for my family, spending time with the Lord,  sending a card or emailing friends that are in another state, getting a massage, going for a manicure, getting a pedicure with a unique design, visiting my parents and family in my hometown, looking at family photos, staying connected with family/friends on Facebook, listening to country music, having a cook-out with all of the neighbors, getting a call from my brothers, and many other things.

My point is life is too short and we try to do too many things and by doing this we sometimes miss out on the important things in life.  Also with a chronic illness I never know from one minute to the next on when I will be too sick to take advantage of doing the things that make me happy.  I have found that sometimes when I am in great pain instead of going to bed or resting on the couch like my body seems to want to do I can go outside and spend time watering or weeding.  Because it is something that I love to do –  it sometimes helps me push through the worst of the pain.  This doesn’t always work but it is worth a try.

For the chronic pain sufferers  – I hope for you a low pain day with extra energy.  Remember, DO WHAT MAKES YOU HAPPY!!

Skin Issues with Fibromyalgia

May 23, 2012

I wanted to share this since I just talked about it Monday.  The information below was posted by the Fibromyalgia Network.

Research on Fibromyalgia Skin Sensitivities
Does your skin burn or itch? Do you frequently get rashes that just won’t go away? According to Charles Lapp, M.D., who treats hundreds of people with fibromyalgia at his center in Charlotte, NC, “fibromyalgia-related rashes occur in the majority of patients that I see.” Lapp, along with another experienced physician, Daniel Wallace, M.D., of UCLA, agrees that skin sensitivities are common in fibro. So what is it about your skin and its related tissues that make them so sensitive? Studies during the past 20 years may help explain why your skin is such a nagging issue. •Xavier Caro, M.D., of Northridge, CA, performed most of the early research in this field to show that there was a high concentration of immune-reactive proteins in the area just beneath the surface of the skin. He theorized that these proteins had escaped through larger-than-normal pores in the blood vessels supplying the skin, and they could be a source of immunological reactions because the body would view them as “foreign” substances in the skin tissues (i.e., it is not normal for these proteins to pass through the blood vessels). •Although Caro’s findings point to an immunological disruption in the skin of patients with fibromyalgia, they are commonly seen in conditions where the microcirculation (the capillaries and small blood vessels) has undergone changes. Haiko Sprott, M.D., of Switzerland, reported that the number of capillaries in the skin of fibromyalgia patients were significantly reduced and irregular in shape. The amount of blood flow to the peripheral tissues (such as the skin) was substantially reduced as well. •A Swedish team found a fourfold increase in the number of mast cells in the skin of fibromyalgia patients. Mast cells, part of the immune system, are filled with many chemicals such as histamine and cytokines (both can cause painful irritation in the surrounding tissues when released from the mast cells). Neurological impulses can cause mast cells to dump their contents (degranulate), eliciting a neuro-immune response. The authors of this study point out that, perplexing, the mast cells are degranulated in areas where the skin looks “normal.” In other words, the surface of the skin does not convey the immunological, neurological, and blood flow abnormalities that are occurring in the tissues below!
Taken together, the above findings may help explain why you are often troubled with rashes that are difficult-to-treat. Even if the skin appears normal on the surface, there is a lot going on beneath the surface to fuel your skin irritations and itchy/burning sensations.

Sensitivity that can go along with Fibromyalgia

May 21, 2012

With fibromyalgia I have heightened senses that cause sensitivity to touch, sight, smell, hearing, & taste.

 TOUCH -Have you ever had someone touch you and it hurts?  It feels like there are little needles in your skin with the slightest touch.  It is kind of like what it feels to touch a cactus.  OUCH!  Clothes even hurt and I have to cut most tags out because they seem to be digging into my skin..  There are certain materials that I just can’t wear, and I can tell immediately if it will irritate my skin as soon as I try it on.  I buy the softest socks I can find and prefer the seamless toe style because even the seam in socks bother my feet.  A trick I found out from my mother-in-law is to turn socks inside out and they are softer and feel much better.  SIGHT -My eyes are more sensitive to light since I was diagnosed to fibromyalgia.  There are times that I just want they lights turned off or dimmed because of this symptom.  SMELL -My sense of smell is so much stronger than it should be.  I had a heightened sense of smell when I was pregnant with our boys, but with fibromyalgia it is off the charts.  I have to buy a lot of unscented products because the odors seems so strong and offensive that they make me sick.  Our boys went fishing this weekend and when they came in they had lake water on them that smelled like fish.  I was so nauseated from the smell that I had to leave the room.  HEARING – I am sensitive to certain noises.  Normally it is something loud that seems to hurt my ears and I have to get away from it.  TASTE – As with the other senses I have a heightened sense of taste.  Food doesn’t seem to taste like it used to and some tastes I am not able to tolerate.  I also get an irritated tongue, irritated inside of my mouth, and irritated throat.  My tongue feels like it has little stickers all in it.  It is basically the same sensation that I feel on my skin, but it is in my mouth.  It seems so raw and irritated sometimes that it makes it kind of difficult to eat.  My rheumatologist gives me a prescription to help with this.  You swish with a small amount and it halfway numbs the inside of your mouth.  I think it is a medicine that they also use for patients with canker sores/mouth sores.  It helps relieve it a little while.  I try to overlook the heightened senses as much as possible and deal with them the best that I can.

Fibro Fog (the brain stealing part of Fibromyalgia)

May 18, 2012

Fibro Fog is the symptom that I dislike the most that goes along with Fibromyalgia.  It takes a perfectly good brain and turns it into one that can’t seem to get the right connections to make it work properly.  I have fibro fog every minute of every day, but it has degrees.  Sometimes my brain will be affected very little and sometimes it is greatly affected.  For those of you without fibro – think of it as when you are driving your vehicle and it is a foggy morning.  Sometimes the fog in front of you is so dense that you can barely see the rode much less the car in front of you and you certainly can’t see anything on the side of the road.  Then sometimes there is a light fog and you can almost see fine but it clouds a little of your view.  This is how fibro fog is to us except it is inside our brain.  On a scale of 1 to 10 it can be anywhere on the scale and can change within a minute.  This makes us forget where we put things, forget important things that we were going to tell you, forget what we were doing, forget your name, and even forget what we were saying in the middle of a sentence.  We also can be in the middle of talking and just stop because we can’t think of the word we are trying to say.  When this happens to me it is like the wheels are turning in my brain but it just can’t make the connection to give me the right word.  This is VERY frustrating and sometimes embarrasing.  For example:  I could be talking about wanting to go get a pizza for dinner.  I am able to say “Why don’t we go get a …..” and I just stop and can’t think of the word, the thing that I was thinking about that I wanted to get for dinner.  Sometimes my family will try to guess the word, and then sometimes I describe the word.  So I would say “It is round, they put sauce and whatever stuff you want, and then put cheese on top”.  So my family can tell me the word that my brain can’t give me.  My family is used to this and when it happens I don’t get embarrased with them, but sometimes I still get frustrated.  Instead of getting frustrated I try to laugh it off with them, because it keeps me from getting frustrated.  When I am out in the world and this happens I normally say “fibro fog” “Sorry, I have Fibromyalgia”.  Most people know of this, but it is still embarrasing to me and very frustrating.  What do you do when this happens to you?

Once when I had a dentist appointment that is only 15 minutes away and in town I had one of my worst times with fibro fog.  We had used this dentist for years and I had been going and even taking my children to their appointments.  On this day it was an appointment for me for a 6 month teeth cleaning.  I started to the dentist and when I stopped my car I was parked in a parking lot for a local university.  I was sitting there wondering what I was doing there and where was it that I was going?  In a minute or two I remembered that I was on my way to the dentist and he was still 5 minutes away.  I called my husband at work and freaked out concerning what had just happened.  He wanted to come and get me but I said that I was now ok and I could make it on my own since the office was only 5 minutes away.  That incident was very scary.  When I am foggy and feel that I shouldn’t get out, I just call and cancel my appointments or call for my husband or mother-in-law to come and take me.  For a while when I would get out I would write down where I was going and what streets to take to get there.  Now, I am ok with jotting down the name of the business or the errand that I want to do and just thinking in my head what streets that I will take to get there.  When I am in more pain my fibro fog increases.  Does yours?

My husband and I are best friends and tell each other everything.  Well… now since I have fibro fog I forget to tell him things ….. even important things.  Sometimes I just totally forget about it for days or weeks and sometimes I ask him if I have told him something.  I am FOREVER saying to him and other family members “Have I already told you ……….”  It is something that has popped in my mind and I can’t remember if I have told them or not.  I have also lost so many memories of my life from childhood and on.  Sometimes I am talking with my parents and brothers when they will bring up something that happened while I was at home and I at least half of it I don’t remember at all.  This is true concerning my 32 years of marriage with my husband.  There are many, many things that I just don’t remember at all.  This is something that really bothers me, because family and memories are so precious and important to me.  Does fibro fog affect you in this way?

What I try to do to help me with fibro fog is make a list of things that I want to try to do that day.  This could be things in the house that I would like to do and/or things I need to do by running an errand.  I like to make a list and mark it off as I accomplish the task.  If I don’t get them all done then there is always tomorrow.  My list could be: take morning medicine, do laundry, load dishwasher, call #### for their birthday, go to grocery store to pick up bread & milk, take evening medicine.  There are things on the list that I HAVE to do and things on the list that have lower priority and could wait until tomorrow if my energy runs out or my pain becomes too great.

I would love to hear your stories about fibro fog or what your thoughts are on fibro fog .

How relationships change when you have a chronic illness

May 16, 2012

It is strange to me how relationships change when you have a chronic illness.  Since I became so ill with Fibromyalgia, Osteoarthritis, & Back issues the relationships with my immediate and extended family are stronger, but the relationships with almost all friends have become more distant or non-existent.  I really miss “my friends” or were they really my friends??  😦

My husband and I have always had a loving and strong relationship, but since my illness our relationship has gotten even stronger – and I didn’t realize that it actually could!  I am grateful that he is so supportive and does anything to help make our lives easier.  I know this is not a “piece of cake” for him.  Relationships with our boys, my parents, mother-in-law, brothers and other extended family members are stronger as well.  I am also so thankful that my family is so supportive.

Friends on the other hand really surprised me.  I mostly had friends from work, friends that I went to church with, and neighbor friends.  My neighborhood friends are still my friends and I still hear from some of my old church friends that I know I could call on at any time.  Work friends that I thought were “my friends” are distant or non-existent except for a couple.  I had worked with some for almost 20 years and I had developed what I thought were really good relationships.  When I had to quit my career (5 years ago) I was VERY ill.  At first I would receive calls or emails from some of them but most just simply forgot about me.  I was too sick for a while to even think about trying to contact friends, and now that I am somewhat better, I normally have to be the one to initiate contact.  I realize that it is difficult to know what to say to people who are so ill, but trust me on this…. just say ANYTHING.  I am still a person and need friends to call and talk, to email me, to talk to me on Facebook, to ask me to go to lunch, etc.

Sorry if I sounded a little pathetic, but this is something that really hurts – way down deep.  Isn’t it strange how relationships change when you have a chronic illness.


May 14, 2012

I am so fatigued today I can barely think.  Fatigue is ever-present in patients with fibromyalgia.  I have spent many days in bed, on the couch, frequent naps, etc.  When my boys were younger they used to call the couch Mama’s charger (like a phone charger).  I preferred to rest on the couch so I could be with them and they got used to me being on “my charger” frequently to get some energy back.  Fibro patients get pretty good at fooling others concerning hiding fatigue and pain.  Sometimes I just HAVE to go to bed and get rest, but normally I try to take frequent rests in a lounge chair, on the couch, etc.  I find that I do better if I try to push myself a little rather than just staying in bed.  I am in CONSTANT pain and never get a break from it.  My Rheumatologist told me a few years ago that it appeared that I had Severe Fibromyalgia and that I would probably continue to have substantial pain and fatigue.  He also said that I would get to where I could tolerate the pain better and I thought he was simply crazy!  I reminded him about 6 months ago what he told me and that at the time I thought he was crazy, because how could anyone tolerate so much pain….. but I do.

The other day I went out to lunch with a good friend and we stopped by a store to pick up some flowers.  After a few minutes I told her that I had to go home because I was starting to crash.  She knew I was tired by that time and asked if I was in pain.  I told her that I am always in pain and yes the pain was getting to be too much and I needed to go home.  She had no idea that I had been hurting the entire time at lunch and the few minutes at the store.  I mentioned earlier that I was “starting to crash”.  What I mean by this is my fatigue is getting too great and I am going to have to lay down very soon.  I don’t do much shopping and I have been out before by myself and had to call my Mother-in-law to come and get me.  We leave my car there while she takes me home and my husband and boys go back later to pick up my car.  Once I was at a local grocery store for a few items and I got to the check-out and realized that I was about to crash.  Luckily one of our sons worked at the grocery store at the time and I asked the manager if my son could take me home since I didn’t feel well and we lived close.  He very kindly let my son take me home and unload my groceries while I went to bed.  W-E-L-L   ……. I am about to crash now so I need to stop for the day and go get some rest.

I wish for you and low pain day and extra energy!

Fibromyalgia Awareness Day 2012

May 12, 2012

Today is Fibromyalgia Awareness Day 2012 – wear purple in support.  This is not something that I am excited to do, looking forward to, wanting to do all of my life….. but it is a day to say I AM ONE OF MANY THAT HAVE FIBROMYALGIA AND WE NEED A CURE!  Fibro not only takes over your life, but it takes over the lives of your family and close friends.  It is something that has been difficult for me and my doctors to help me get much relief from the pain, fatigue, and many other symptoms.  It took from me precious time with my family, it took my career, it took half of our family’s income, it took my health, it took my total independence, it took a lot of my happiness at times….. but it is not who I am, it is an illness that I have and I try each day to take back more of my own life.  I am spending today with my husband and 3 boys and I intend to enjoy the entire day and try to live life to the fullest!!

I wish for you today a low pain day and extra energy! 

My Fibromyalgia Story updated due to FIBRO FOG

May 11, 2012

Well, this morning I was rereading my blog from yesterday and realized I had left out some KEY people in helping over the years as I have struggled in living with Severe Fibromyalgia.  This is due to Fibro Fog that clouds my mind and doesn’t let the necessary connections be made so I can think clearly, be able to complete sentences when I am talking, or remember even half of my past.  I will do a blog soon on Fibro Fog and talk indepth about it.

My mother-in-law, Nina, has helped with everything from activities with the boys or anything they wanted to do (including playing baseball with her in the backyard), cleaning my house, cooking us meals, etc.  She lives only a minute away and has been here in a minutes notice when I have needed her.  She helped us raise the boys when I was still able to work, she took them to spend the night with her on Friday nights to give me and my husband some quiet time, she has been a good friend that they can talk to about anything, and even though two of the boys are away at college they still have traditions that they continue to do with her.  To mention only a couple – One is spending the night with her on New Year’s Eve, staying up, and celebrating.  They still like to go and watch ball games with her at her house, and visit with her when they come home.  They have been doing these traditions since they were very little and enjoy time with her.  My mother-in-law has been a BIG part of our family throughout the years.  She is at an age that I should be taking care of her, although she is still very healthy and even still walks 2 miles a day.  So… with my illness she takes care of our family as needed.  Yesterday she came over and swept & mopped my kitchen floor!  She helps my husband and boys do the things that I am no longer able to do.  Praise God for her!

My parents, brothers, family, and friends have prayed for me throughout this ordeal.  They live about 4 hours away so they can’t just drive over when needed.  I am thankful for being able to talk to them on the phone to get comfort and for their continued prayers.

Our 3 boys stepped up to the plate to take care of whatever needed to be done (shopping, cooking, cleaning, etc)  We have always been very close and it was difficult when they started missing more and more time with me because I was in bed too fatigued to get up,  When I was awake they would come in my room to talk and be with me as much as they could.  At my worst we had one child, Kyle, living out of the home and two at home.  Kyle would come over and help us as needed.  Our middle son, Tyler, used to come home from school at lunch when he was 15 – 17 to make and bring me lunch to my bed, offer to do anything that I needed, kept me company, and also would tell me jokes or do/say something that would make me laugh.  He and our youngest son, Ryan, would come home after school to be with me and help around the house instead of going out with friends.  This is something I will forever be grateful for.  All three of them have grown into nice, kind-hearted young men.

Thanks for reading my blog and if you have Fibromyalgia may you have a low pain day with extra energy! 

My Fibromyalgia Story

May 10, 2012

Welcome to my new blog.  This is my story.

I have Severe Fibromyalgia which causes me constant pain and fatigue among many other symptoms.  I have had Fibromyalgia for many years but just didn’t know what it was.  At first it started with aches and pain that others didn’t seem to have at my age of around 30 years old.  By 40 the fatigue and pain increased and since a doctor brushed it off a few years prior with “You work full-time and have a husband and 3 children – you should be tired and have pain”, I thought that since I had turned the BIG 4-0 that MAYBE this was to be expected.  Then it quickly became apparent that this was more than turning 40 so I started with my doctor.  It wasn’t long that I made an appointment with an internal medicine doctor that sent me on to a Rheumatologist.  The Rheumatologist diagnosed me with SEVERE Fibromyalgia since my pain and fatigue was so great.  Over the next two years I tried numerous medications with little to no help with the fatigue and pain.  I had a career in financial institutions and had worked with my current employer for almost 20 years.  I had worked my way up to management and enjoyed my career.  By age 44 my fibromyalgia had become so severe that I was using a sleeping bag and pillow at work to rest in the morning before work, at lunch, and during the day as needed.  I had an office that I could close my door and blinds and my boss and employees were understanding and knew that I was very ill.  I could no longer drive myself to work or do anything at home.  My husband and boys took over all housework and all I could do was get up, take a shower, sleep/rest as my husband drove me to work, use my sleeping bag and pillow as needed during the day, sleep/rest as my husband drove me home, and crawl into bed for the night.  When I was 45 my Rheumatologist told me I could no longer work and gave me the dreaded note of “Ginger will no longer be able to work even for the forseeable future”.  I spent 2 years in bed only getting up to go to the bathroom and take a shower.  My husband or children would bring my meals to my bed because I was so weak and it was difficult for me to stay up long.  I was nauseated most of the time so I mostly ate hot cereal (The only thing besides bread and cheese that I normally ate). I have continued to see my Rheumatologist every 3 months or as needed.  I also have developed osteoarthritis that makes my joints painful in addition to the pain of fibromyalgia.  I have tried numerous medications and currently taking Lyrica that seems to give me a little relief along with other medications.  I am now able to do light housework, get out of the house a little, and spend time with my family.  I have learned that I have to conserve my energy and my main “job” is taking care of my health.  Daily life with fibromyalgia is very difficult but livable.  I hope you enjoy my blog.

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