Same Old Pain, Now With Migraines

I’m used to the pain I have from Fibromyalgia, it’s not bad most days, no pain killers needed. Sure, there are a few days, mostly weather-related, that it gets worse but I can  stand that too, most of the time. It was under control until one day when I started having a headache that would not go away.

 

 

 

 

I’ve had plenty of headaches before mostly in the middle of my head and that’s how this one started so I thought nothing of it. I took Tylenol, the only medicine I am allowed  (Chronic Kidney Disease) to take, but it did not help. It was a mild headache for two days, I thought nothing of it.

Suddenly, the pain started crawling up on the left side of my face. It settled there like a jumbo jet that had just landed at the airport and was pulling straight into the proper gate. Passengers came off the plane then airline crew, the plane was cleaned and this baby was not going anywhere tonight. The headache had landed.

 

It’s hard to imagine I have another pain symptom but I accept it as my curse, this ugly life of mine. At almost 58 years old I now get migraines. “Welcome to the club” I mutter angrily under my breath, asking: “Why me?”

 

The first migraine, which ended me in the Emergency Room of the hospital moaning in pain and begging for a shot of something, anything, to relieve the intense, hammering pain happened a couple of months ago. “Nice to meet you, meet your new doctor, your Nurologist”.

I thought it was a one time thing, A visit to the Emergency Room, a shot and hydration and two days later I was fine. I went home where the lights were dim, I was safe in bed and all I wanted was darkness and no company, no radio, no television, just black solitude. I laid on my back and pulled the covers over my forehead, yes, this was my safe place, I promised myself the pain was over, gone for good.

Unfortunately, it came back with a vengeance twice more. Once a month ago and one two weeks ago.  I tried all the tricks, the medicine to supposedly make it go away before it really hits, a dark room, breathing slowly, ice, pressure points, Reiki, meditation….you name it, I tried it but it is clinging on to my head with traction and beating harder and harder.

It is now moving to the center of my forehead and the hammer is following after the movement, banging away, beat after beat rhythmically while all I can do is shut down and shudder.

Deutsch: "Kopfschmerzen". Die wohl b...

Deutsch: “Kopfschmerzen”. Die wohl berühmteste – stark von James Gillray beeinflußte – Arbeit in einer Reihe von sechs Blättern “medizinischer” Karikaturen, in denen Cruikshank Krankheiten als Teufelswerk brandmarkt. Erstmalig publiziert: 12. Februar 1819. Originalgröße: 210 x 255 mm (Photo credit: Wikipedia)

I know this isn’t fair, I know that life isn’t fair. I have accepted this new symptom because i don’t have a choice. It has joined the family of maladies that already exist, trapped in every limb of my body, from head to toe.

 

Since I was five I’ve always had a very low tolerance for pain, my parents used to tell me that. If one orange baby aspirin worked on other children to get their temperatures down, I needed two. I am still that way, believe me, it isn’t fun.

Recently, a friend told me to push my Internist to check more complicated Lyme Disease tests and I will do that. What are the chances? I don’t know but I will try. I don’t want to get even remotely excited.

Been there, done that, way too many times. I have no hope. I feel battered.

Enough already. This is getting old. Fast.

 

 

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An Open Letter To Ellen Degeneres

English: Ellen DeGeneres in 2009.

English: Ellen DeGeneres in 2009. (Photo credit: Wikipedia)

Dear Ellen, I hope you don’t mind me addressing this to you, I just need someone to listen, someone who cares about other people. I thought you were the right person even though I’m sure you will NEVER see it. That’s okay. With the exception of a few best friends I’ve learned the hard way that other people are too busy in their own lives to care.

I DON’T WANT ANYTHING FROM YOU.

I guess I’m trying to think and talk out loud here. I’m lost, and have no idea what happened to me, I have no idea who I am either though I used to know so clearly.

Have I just become a mountain of symptoms trying to blend themselves together in a jig saw puzzle where no piece fits? I’ve made changes, I stay away from negative people, I try to be as kind as possible and pay it forward when I can but still trouble follows me like a black cloud.

Believe me, I am NOT asking for pity. I don’t want anyone’s pity, if I want pity I give it to myself, underneath my three layers of blankets, with the door shut tight, my dog lying next to me on my bed. I don’t want pep talks either, encouraging me that it “is just a phase.” This phase is my life and I have accepted it, I just don’t understand it.  When I try to fight against the “down” period, people tell me not to do that and to be positive. Everything is a mixed message.

You have the natural talent to bring joy to others just by being yourself, I love that.

Right now, I am a huge collection of symptoms that I don’t mind sharing, I’m 57, there are people who are 97 that are healthier than I am. From head to toe: narrow angled glaucoma (eyes) many, MANY painful treatments in my eyes to try to correct that, but its a life long condition, hearing loss (had stapedectomy-operation for ears) the dreaded Eppiglottitis, I don’t wish on my worst enemy, I shiver at the thought, (open, gaping wounds below the throat,) horrific TMJ, shooting pains from my jaw/ear to my brain causing me to scream with agony caused by any random thing and some other facial myalgia the doctors threw at me) which I don’t even count. I have IBS, Fibromyalgia, Fatigue, No energy, Chronic muscle and joint pain, Fibro Fog (not remembering something someone said a minute ago.) General Anxiety Disorder, Hashimoto’s Thyroiditis (an auto immune disease of the thyroid) foot pain, wait, the most recent one and most deadly,  Kidney Failure, Stage 3? (No one ever told me about Stage one or two) I think I’ll stop here.

Now for the social things, I can’t work because of the above illnesses, my husband was laid off for the second time and still is not working. We have two fabulous children who are attending two different state universities and a dog (our second) I rescued from a shelter.

I want you to know that we ARE thankful for our blessings, we truly are. Writing this down makes me realize that even more.Thank you for listening, sometimes it is good to write it down and look at it on paper.

But, am I jinxed? Is this what they call “going through a rough patch?” Whenever I feel I’ve reached bottom something else happens. Do you only know where the bottom is when you finally start climbing up slowly? Isn’t it possible to stay down here forever?

I guess I just have to accept what is going on now, breathe slowly in and out and believe that something good will happen. Someday.

Please don’t “like” this post. I don’t.

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Fibro Girl, Grey’s Anatomy And Me

Grey's Anatomy (season 1)

Grey’s Anatomy (season 1) (Photo credit: Wikipedia)

When I think of “Fibro Girl” I imagine a small, spunky superhero with brown hair and round black glasses and a red cape that has a big bold black F on it. I don’t know why I think of her that way but it amuses me. Maybe because it’s such a juxtaposition between her life and mine. She is trying to fight Fibromyalgia with her strength. I have NO strength. When I was FINALLY diagnosed with Fibromyalgia, seven years ago, my strength was taken away.

Our lives with this illness are question marks. It is hard for us to plan ahead. In fact for me, it’s impossible. For people who DON’T have FIBROMYALGIA OR DOUBTERS (seriously? still?)  I am physically unable to commit to a date in the future without the caveat “depends on how I’m feeling.”  People who cannot understand that are not true friends. We didn’t ask for this, we wish we didn’t have it. Believe us.

My current experience with Fibromyalgia is that I am able to do one errand per day, MAYBE two. If I push my limit I’m wiped out and pay for it later with exhaustion/ pain. At the moment I am not suffering as much physical pain as I had in the past. (see past Fibromyalgia posts) There’s always some pain but I have learned to accept and manage that pain because of a great doctor and the right combination of Fibro drugs. Now, doctors are worried about a new “balance issue” which has nothing to do with Fibromyalgia.  More tests, a pink cane….I can’t walk a straight line, two perfect CAT scans. Can we stop now? No.

Fibromyalgia takes control over us. I’m embarrassed to say that I never thought about it that way. Amazing how our lives change so quickly. If stress is indeed a factor, I’m in deep trouble. My husband got laid off 2 days ago. I can’t work even though I want to and we need the money but it’s not possible. It doesn’t seem right to punish us for something we physically cannot do. Not right at all.

We don’t live in a perfect world, although I really do know people who live a charmed life in every aspect of their lives. Lucky them, maybe they have dark secrets but I doubt it. All I want is a break in having to struggle every single day with some new illness or symptom. The umbrella of Fibromyalagia has so many illnesses underneath it I go to the doctor(s) way too much.

Right now, with the weather is getting colder. I always feel worse when it is cold outside. Then, a good time for me is staying in bed with my dog lying next to me, watching Grey’s Anatomy, Parenthood or The Voice. The television has become my life line. That and this computer connecting me to friends with Fibro and without. We do the best we can with what we have. Minute by minute, day by day. We’re in it together, holding hands, on-line and off.

Carry on Tuesday – Life isn’t about what happens to you, it’s about how you handle what happens.

Cardiac ICU

Cardiac ICU (Photo credit: Sam Blackman)

It was Father’s Day, our baby was nine months old and my husband and I had driven from Massachusetts to my parents’ condo in upstate New York. It was our first Father’s Day with our son and after two and a half years of infertility treatment, nothing made us happier than spending time with our boy. I felt blessed that I had finally gotten pregnant and every night I thanked God for this beautiful boy. I had been dealing with shots and blood tests and sonograms and depression every single day and night for over two years.

We had eaten brunch altogether, my sister and her husband and kids had arrived as well, my father seemed unusually quiet. I felt something was wrong; all those times my mom had complained I was “over-sensitive” I was just good at picking up vibrations. My mother looked concerned. Finally, my dad admitted he wasn’t feeling well but refused to go to the doctor. He did not fall over with stabbing pains, he felt bad, his chest hurt but his skin color was not right, it was almost gray and that upset me the most.

We had always had a special bond and he wasn’t listening to my mother or anyone else. I knew, in my heart, in my gut, that something was very wrong. He said that he would drive to the hospital and my mother agreed but there was no way that was going to happen. He refused an ambulance. Finally, I was so upset that I burst into tears and begged, I begged him to let me drive him and my mom to the Emergency Room in Danbury. I sobbed, “Daddy, do it for me” and he said okay.

When we arrived his blood , an EKG administered and a very superior and obnoxious young resident came in and in clipped tones told him, “You are a very, very sick man.” My father was in complete denial and refused to believe him. Apparently he had suffered a major heart attack and was admitted to the hospital. We stayed until we were literally thrown out of the hospital and heard an announcement that my car was just about to be towed. We drove back to their condo not knowing what to do. I remember my mother saying “you saved his life.”

Life isn’t about what happens to YOU, not always, it’s about how you handle what happens when situations arise. It was very late, Sunday night. My husband had to go back to work in Massachusetts, my son was nine months old and we had never been separated. There was no offer from my sister and her husband and I knew my mother could not handle this alone. We had a family history of that. In my heart, I knew what needed to happen. It turned out that my in-laws took my son back to their house, my husband went back to our house and I stayed with my mother to help with my dad. At the time there seemed like there was no other choice. The next morning we found out that he had 90 percent blockage in five arteries. He was indeed, a very sick man.

They moved him to Columbia Presbyterian Hospital and in a few days he had open heart surgery. I visited with my dad and had to say good-bye before they wheeled him to surgery and it’s probably one of the hardest things I have ever done. I cried, I couldn’t stop myself and my father knew me too well, a tear slid down his cheek as well. My dad and I are so alike. My mom and I waited the entire day in the hospital, over six or seven hours, pacing the halls, waiting for his doctor to tell us the news. I couldn’t eat a bite of food all day. Seven hours later the surgeon came out and the news was great, he had gotten through the surgery and we could see him the next day. Imagine my shock, when the next day in ICU he was sitting up, shaved and wearing his glasses!

I never thought I could leave my son, my beloved first-born but sometimes, deep inside you, you know the right thing to do. I have never been sorry that I made that decision. My father lived through the operation and I remember he came home on July 4th, Independence Day.

That night I drove home in the dark, yelled “Hi “to my dear husband, dashed up the stairs and took my sleeping baby, now home, in my arms. I stood there, rocking him back and forth for a very long time.

Women experience different symptoms from men: check out this wonderful website: http://www.myheartsisters.org by Carolyn Thomas

Who, Really, Defines An Illness?

12/25/09

We are on a much awaited for vacation in Aruba. I traveled with about 25 different medications in my wash kit. Some of whom I don’t remember why they were prescribed to me but I keep them as if they were a talisman.  I am taking the same medications here for my Hashimoto’s Thyroiditis, an auto immune disease, and a variety of other symptoms, fibromyalgia, a torn ligament, excruciating back spasms from having to wear the dreaded but classic “black boot”of the podiatric and orthopedic world for many months.

Back home, lying in my bed, day after day, I was always tired, achey and filled with pain.  I admit that the plane ride itself was exceedingly painful but I am off that plane now; and I feel ever so fine.

My Dr. a guru in NYC was considering prescribing me (self ) injectable medication, at a much higher dosage than the pill form I still take.   I had been considering it. I had been pondering how much is too much? Wondering if  I was at the half way point for feeling good, by HIS standards, if that wasn’t good enough.  But, what about MY standards? What about my level of pain and misery and feeling , always, like a patient and feeling good enough.

What about the mind/body experience? What happened after I dragged my worn out body, aching foot and excruciating back pain and came here?  I was minus the snow and ice, minus the bedroom I had been living in for almost two years and feeling very sorry for myself. I was determined that this vacation, “if we should be so blessed” would be the start of a new beginning for me. Despite the cane that came crashing on my head during the flight and injuring my eye, this was starting anew.

It was. It is.  So, who really defines what an illness is, a Dr. or the patient?  On the journal I keep for my Dr. at home, 1 being in really bad shape and 10 being something “I can never achieve” at home I am a solid 5, maybe 4.  The same symptoms and diagnosis in a beautiful new environment for a few sun-filled days and I am an 8 if not 9.  Do we look at things differently if we are in a different environment, or do we look at ourselves differently? If there is something beautiful to see does that help beautify the mind and body?  I feel good here, I feel warm here, I feel  something that I haven’t felt in over 2 years; I feel alive. And hopeful.

dedicated to Phylor who makes me think, and wonder.