Tag Archives: fibromyalgia

Hate to Say Goodbye

Two days ago there was a notification in my inbox that there was a new post from fellow blogger Jen at Myfibrotasticlife.  Jen stated that this post would be her last post.  Jen has been struggling for a long time with her fibromyalgia.  She has finally come to the point where she has to eliminate things from her life to make it easier.  Sadly, one of those things is her blog.  I know how hard it is sometimes to get up and write when you are not feeling well or your body is betraying you.

One of the things Jen discovered that she enjoyed doing was crocheting and she created an Arts & Crafts Gallery on her blog to show her work which she also sold on etsy.

I just want to say that I will miss your posts Jen and wish nothing but the best for you.  I hope Jen will continue to stay in contact with me through the blog so that I can know how she is doing.

Catch-Up Mondays – I knew I was Sick But – revisited

This post was first shared here on November 2, 2012.  I don’t even think I have mentioned my entire diagnosis in my book.  My letter with the diagnosis would have been a good thing to have added. 

Someone asked me a short time ago to tell more about me.  Rather than go from the beginning I am going to talk about being sent to Dallas and getting my diagnosis.  I knew I was sick but had no idea how far-reaching the mold exposure had been in terms of my body.

I had been sick for about 2 1/2 years when I was finally sent to Dr. William Rea at the Environmental Health Center-Dallas through my ENT.  I arrived on a cold day in February 2002.   After meeting with Dr. Rea, doing lots of tests and being observed, a letter was written for me to submit to my doctors here and to my attorney for my workers’ compensation case.  Dr. Rea wrote an extended letter and I am going to try to give a synopsis of what he found wrong.

Toxic Encephalopathy secondary to mold, mold toxin and chemical exposure (when I was moved from the school with the mold to a new school being painted, etc. while we were trying to set it up for school to start)

Toxic Effects of Petrochemicals and Solvents

Toxic Effects of Mold and Mold Toxin

Immune Deregulation

Allergic Rhinitis

Food Sensitivity (only safe foods at the time were rabbit, venison, deer, elk, cranberries, acorn squash, eggs, raspberries)

Mold Sensitivity

Pollen Sensitivity

Chemical Sensitivity

Chronic Sinusitits

Chronic Fatigue

Fibromyalgia

Autonomic Nervous System Dysfunction

Multi-organ system dysfunction

Neurotoxicity based on SPECT scan

Hyper metabolic and hyper reactive state

I couldn’t sleep, I was on a nebulized antifungal, I was on so many medications when I arrived.  I would sit and look at the television and it was as if the screen was narrowing and moving toward me (a very strange sensation), my depth perception was a mess.  I would be in the testing room, take a drink my from glass water bottle and then set it back down.  Bam, glass and water would be all over the floor.  I couldn’t gauge when the bottle was on the floor unless I slowly lowered it and listened for it to touch the ground before I released it.  My short-term memory was just that, short-term.  My husband made me walk from our condo to the center so that I would be able to find it because I would not have a car when he went home.  Every morning we would walk the four blocks and when we got to the parking lot I wouldn’t remember where I needed to enter the building and my husband would once again have to show me.  Once in the building when I would leave the testing or exam rooms to go to the sauna, I would invariably turn towards the exit.  I just couldn’t keep my directions straight.  So much goes on at the center.  There is doctor appointments, lab appointments, provocation/neutralization skin testing, sauna, IV’s.  I soon learned that my weekly appointment calendar was my only salvation.  Every Friday I would schedule all my appointments for the next week.  I lived by that appointment book.  It was the only way I could remember where I was supposed to be at any given time as long as I could remember how to get from point “A” to point “B”.

In fact when I returned home after a long stay in 2003 and moved into my “safe” home my memory was still a mess.  One day I got up and put a pot of beans on to cook in the kitchen and then went back into my bedroom.  I still had no furniture in the kitchen or living room.  I pretty much lived in my bedroom with my army cot and blankets, my CD player and my television.  One afternoon my smoke alarms started blaring (all four of them from the entrance to each bedroom).  I began to panic!  MY HOUSE WAS ON FIRE!  Was there a wiring issue?  What was going on?  What would I do if my house burned down?  Where would I go?  I began walking through the house looking for any signs of trouble.  Then as I walked towards the kitchen it dawned on me that I had beans on the stove.  The beans had boiled dry and stuck to the bottom of the pan.  Since that time I have to set a timer whenever I put something on the stove.  The caveat to that is that I have to be within ear range of the timer.  I have turned the timer on and went outdoors only to see smoke coming out of my kitchen vent.

My autonomic nervous system was a mess too.  I would go to bed and the slightest movement (me rolling over or me just moving in the bed) would send me into horrible state.  Imagine being at the top of one of those rides at an amusement park where you are raised to the top and then dropped.  That is what it felt like to me.  And this would happen over and over again all night long.  If I tried to get up and go to the bathroom the mere act of lying back down would set it off.  This went on for months and months.  I haven’t had a severe reaction like that in a very long time.  I still get that sensation occasionally but thankfully it is not my nightly companion.

My life has been turned upside down and inside out.  I say I live in the Twilight Zone or Bizarro Land.  I make the most of what I can do and have to accept my limitations and my losses.  The depression was eating me alive from the inside out and I had to make a decision.  Either I let the depression and loneliness and sadness take over my life or I had to learn to change the way I perceived this invisible illness.  I have chosen to try to change my perspective.  I try to stay positive, I try not to feel envious of what others can or are doing, I try to be grateful for what I have and not dwell on what I don’t have.  When friends tell me they are going on a cruise, or going to another country or on some long weekend, jealousy starts to set in and depression rears its ugly head.  Sometimes it is hard to hear the stories from their trips when they return.  I had been home from Dallas for about a year when my husband had the opportunity to go to England as a chaperone with his high school.  Oh how I was envious.  I wanted him to go, but I didn’t want him to go.  I didn’t want to participate in the plans, didn’t want to hear where he was going, didn’t want to think about being here alone at home with him far away having fun.  Once he was gone I decided that this allowed me the freedom to watch whatever movie I wanted to watch or watch movies all day.  I could sit in my bed and read all day if I wanted to.  I ate when I wanted to.  I got in my car and drove around just for the sake of driving around.  I was good until he came home with pictures from the trip.  Sadness welled up inside of me as he told me where he had gone and explained what he had seen.  I wanted to just bolt.  I didn’t want to hear the stories, didn’t want to see the pictures, didn’t want to feel the sadness.  Finally I realized I wasn’t being fair to him.  He was excited about this amazing journey and what he had seen and done.  I listened and I looked and I put on my brave face.  I have to say, however, that I haven’t looked at those pictures since and hate it when we are watching a movie and he tells me that he has been to that fountain or that museum.  I may be getting stronger every day but the realization that I probably will never make that kind of trip is hard but I am becoming more okay with it as time goes by.

Fibro Awareness Day

fibro awarenessMay 12

Tomorrow is Fibromyalgia Day.  Please help me recognize all those who suffer from Fibromyalgia and help spread the word by re-blogging this post.

This was taken from the National Fibromyalgia and Chronic Pain Assocation:

If you ask any person with fibromyalgia what fibromyalgia is, their response would be pain; from the top of their head to the end of their toes.  Pain that “waxes and wanes” from day to day and persists even with the use of scientifically accepted medical treatments.  The pain experience is described as deep muscular aching, shooting, throbbing, stabbing, pounding, along with many other acronyms and it is at times unbearable.  People with FM do not sleep well and wake up feeling like they have been hit by a “Mack Truck” resulting in morning stiffness or spasticity that makes it difficult to move.  Repetitive movement seems to accentuate the pain and forces many FM patients to severely limit their activities including exercise routines.  This lack of exercise results in people becoming physically unfit which causes their FM symptoms to become more severe.  The other major complaint is fatigue so severe that people have a difficult time performing everyday tasks, enjoying hobbies, staying employed or taking part in their children’s activities.  People may feel as though their arms and legs are weighed down by cement and their bodies may feel so drained of energy that every task is a major effort. 

I know this is something that is unbearable for many sufferers.  As I have said mine is bearable until I get an exposure which takes it to another level of pain and achiness.  A high school friend has been living with extreme Fibromyalgia pain and symptoms for many years now.  Despite her pain she continues to work full time, co-host a radio show once a week, provide inspiration and support to her friends, and publish two books filled with inspirational writings and poems.  I have asked her how she does it and she modestly says it has to be done.  Jerri Duncan-Hansen’s books Fences and Fences:  The Journey Continues are available at Amazon.com.

For all those of you who suffer whether in a milder form like me or in more severe forms like my friend Jerri, I dedicate this post to you.

Did someone just beat me up?

Yesterday morning I got up after my exposure at the oral surgeon’s office feeling less than myself.  I was tired and a little out of it.  I got myself motivated to at least vacuum and steam the kitchen and living room.

By 2:00 p.m. my arms and legs hurt so bad I just had to go to bed. I have mentioned that I have been diagnosed with Fibromyalgia.  Mine for the most part consists of achiness off and on unless I get an exposure to chemicals or mold.   I stayed in bed and slept on and off until I finally got up at 8:00 p.m. and ate some dinner (much thanks to my dear husband).  I immediately climbed back into bed and slept through the night.  I had a slight fever for a bit.  I was worried that I might be coming down with something but no this feels too much like my body reacting from a hefty exposure.

I am still achy and could easily just crawl back under the covers and ignore the world.  This tells me that there is no way I could be in that office without my mask for 30 minutes or longer.

I am going to attempt to get through my jumble of emails and read posts from fellow bloggers through the day.  Maybe I need some more glutathione, Vitamin C and magnesium.

Have a good day you all.

 

 

Allergictolifemybattle receives Reality Blog Award

Angela of Angchronicles (http://angchronicles.wordpress.com) has honored me with the Reality Blog Award today, November 23, 2012.  On behalf of myself and this blog, I humbly accept this award.  I have truly enjoyed the inspiration that is given at Angela’s blog.

I will work hard to live up to this award now that it has been bestowed upon me.  The rules that accompany this award are:

1) Show appreciation of the blogger who nominated you and link back to them in your post.  (I am doing this in my post today.)

2) Add the award logo to your blog (In the top of this blog post)

3) Share 7 things about yourself (Below the rules)

4) Nominate 5 – 10 or more bloggers you admire. (Listed at bottom of this post)

5) Contact your chosen bloggers to let them know. (CHECK YOUR BLOG!)
 
SEVEN THINGS ABOUT ME:
 
* Just finished my book “Allergic to Life:  My Battle for Survival, Courage, and Hope”
* Learning to multi-task again after my brain stopped allowing it
* Attempting to reach out to others with mold illness, chemical sensitivity or other environmental illness
* Learning to embrace my illness rather than reject it in hope of helping others and offering compassion from someone who is/has been in their shoes
* Love to read
* Crafty (love sewing and making things)
* Enjoying life more than ever before despite my limitations
 
Now for the moment you have all been waiting for.  I am awarding the Reality Blog Award to:
 
Melanie @ adaptingtoallergies (Melanie writes about caring for a son with food allergies.)
 
Rachel @ doilooksick (Rachel is raising awareness of invisible illnesses.)
 
Lisa @ runfastmama.com (Lisa writes about life as a mother, runner, and food allergy sufferer.)
 
Lindsay @ dysautonomiac.com (Lindsay writes about living life with POTS.)
 
Michellina @ the-labyrinth.com (Michellina writes about issues similar to mine – mold illness and chemical sensitivities.)
 
Allan @ akrummenacker (Allan writes about working on his novel while living with fibromyalgia.)
 
acflory @ Meeka’s Mind – acflory.wordpress.com (This follow’s the writings of alter ego Meeka.)
 
Anaphylaxing @ mastcellactivation.blogspot.com (This blog discusses life with a multitude of “invisible” illnesses including anaphylaxis, POTS and adrenal insufficiency.)
 
Andrea @ Our Health Journey – moldrecovery.blogspot.com (Andrea writes about her family’s health journey following a severe mold exposure.)
 
All the authors of the blogs mentioned above inspire me.  They inspire me for how they deal with their illness and sensitivities or those of someone they love.  They inspire me for their dedication to writing, something I have just begun since writing the story of my own illness and path toward healing both physically and emotionally.
 
 
 
 

What I learned during National Invisible Chronic Illness Awareness Week

Sunday ends National Invisible Chronic Illness Awareness Week.  I first posted Monday on National Invisible Chronic Illness Awareness Week and included a link to the site  (http://invisibleillnessweek.com/submit-article/your-blogs-for-the-cause/).  I have read all the blogs posted (70) as of this writing.  What I have learned is that I am far from being the only person dealing with this outside my group of friends I have met since my journey began.  I have also learned that there are many “brave” men and women out there trying to carry on with their lives the best they can despite reactions, pain, chronic infections, chronic migraines, and the battle with depression either on its own or as a side effect of their other illnesses.  The stories were not much different from mine.  Some illnesses I was familiar with or had heard of but didn’t know much about.  Other illnesses I had never heard of before which sent me on a quick google search.

In honor of all those whose stories I have read over this past week and in honor of those whose stories are yet to be told, I say “GOD BLESS YOU” for hanging in there and for not giving up.

I am going to attempt to list all those illness that I read about here today.

Budd Chiari Syndrome  (I didn’t know about this ) – a blockage of the hepatic vein which carries blood away from the liver resulting in liver damage.

Chronic Fatigue Syndrome  see ME

Chronic Pain (I think this speaks for itself) – chronic pain can be caused from anything from rheumatoid arthritis to injuries from an accident.

Cuada Equina Syndrome (CES)  (One of so many illness that I was unaware of) – this is a rare disorder that affects the bundle of nerves roots (cuada equina) at the lower (lumbar) end of the spinal cord. 

 Cystinosis (another illness I was unaware of) a rare genetic disorder that causes an accumulation of  cystine, an amino acid,  within cells.  This causes crystals to form and build up damaging cells.  The crystals can affect many systems in the body especially the kidneys and eyes.

Depression – this can be hard enough to deal with but could also be a direct result of any of these conditions.

Diabetes (something most people know about but it makes sense that it would be an invisible illness)

Dysautonomia or also referred to as POTS (I have heard this a lot among fellow EI and MCS sufferers) –This is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls  heart rate, blood pressure, digestive tract, and sweating among others.   Some with dysautonomia are affected mildly while others can be left bed-ridden.

Ehler’s Danlos Syndrome  (I had never heard of this before) – A group of disorders marked by loose joints and hyperelastic skin that bruises easily.

Endometriosis  (I learned I had Stage IV while a hysterectomy was performed due to extreme hemorrhagic ovarian cysts and the possibility of ovarian cancer) cells in the lining of the uterus grow outside the womb and attach themselves to other organs causing pain, sometimes debilitating pain.

Environmental Illness/Chemical Sensitivity (This describes me) a controversial condition where slight exposures to a chemical or group of chemicals can cause a wide array of symptoms from severe headache and brain fog to neurological reactions and respiratory symptoms.

Fibromyalgia (I have this but not nearly as severe as others I know) a common syndrome in which a person has long-term body pain and tenderness in the joints, muscles, tendons and other soft tissues.  It has also been linked to fatigue, sleep problems, headaches, depression and anxiety.

Food Allergies (I have this as well) An allergy to many foods.  Reactions can vary from rashes and hives to anaphylaxis. 

Glycogen Storage Disease or GSD (something I was not aware of)  – An absence or deficiency of on of the enzymes responsible for making or breaking down glycogen in the body. Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle.

Graves Disease – a thyroid disorder that leads to the overactivity of the thyroid gland.

Lupus   Systemic lupus erythematosus (SLE) an autoimmune disease which means the body’s immune system mistakenly attacks healthy tissue which leads to chronic long-term inflammation.

Lyme Disease (this is something that is finally making more headlines) – caused most predominantly by the deer tick.  Left untreated, later symptoms may involve the joints, heart, and central nervous system.

Migraine – a chronic disorder characterized by recurrent moderate to severe headaches.  Symptoms include nausea, vomiting, photophobia and phonophobia.

Myalgic Encephalomyelitis (I have heard this in terms of Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome) – is used to designate a significantly debilitating medical order or group of disorders defined by persistent fatigue.

Mycotoxicosis (another diagnosis of mine) refers to the poisoning from exposure to mycotoxins.  The symptoms depend on the type of mycotoxin, the concentration, and the length of exposure.  Age, sex, and health also are determining factors in symptoms.  Mycotoxins can potentially cause acute and chronic health effects from ingestion, skin contact, and inhalation.  Some of the health effects found in animals and humans include death, identifiable diseases or health problems, weakened immune systems, allergens, or irritants.

NASH or Nonalcholic steatohepatitis (I had never heard of this disease before) – is a common often “silent” liver disease.  It resembles alcoholic liver disease but occurs in those who drink little or no alcohol.  The main feature is fat in the liver along with inflammation and damage.

Parasitic Infections – Many different parasites (including that which causes Lyme) can cause devastating effects on the body.  Some I have read about during National Invisible Chronic Illness Awareness Week are Babesiosis, Bartonella and Ehrlichiosis.

POTS  Postural orthostatic tachycardia syndrome  is a condition of  dysautonomia (see above).   A change from  lying to standing upright causes an abnormally large increase in heart rate.

PVC or premature ventricular contraction (another invisible illness I had never heard of) may be perceived as a skipped beat or felt as palpitations in the chest.  They are extra abnormal heart beats that begin in the heart’s lower chambers or ventricles causing insufficient circulation.

Rheumatoid Arthritis –  a long-term disease that leads to inflammation of the joints and surrounding tissues.  It can also affect other organs.

Sarcoidosis (A friend once told me she had been diagnosed with this) – Sarcoidosis is a disease in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. Sarcoidosis can affect almost any organ of the body, but it most commonly affects the lungs.

Sjogren’s (again this was something I had heard about bud didn’t know anything about) a chronic autoimmune disease in which white blood cells attack their moisture-producing glands.  Most known symptoms are dry eyes and mouth but may also affect other organs such kidneys, blood vessels, lungs, liver, pancreas and the central nervous system.  Another piece of information that I wasn’t aware of is that is one of the most prevalent autoimmune disorders and 9 out of 10 patients are women.

Wegner’s Granulomatosis  – a rare disorder in which blood vessels become inflamed, making it hard for blood to flow.  It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys.  It is thought to be an autoimmune disorder.