*”salt ur food?”

my rifght haand is clutching tht ice pack over the big bump on the lefftt hand side off my head,,  my heaed has beien pouwnding 4r days and it hasnt sto[[pped. this my not look prrtty but it sure as hlkl is genuine, though by now, if u r reading my blog this wont come as a big surprise.

My World (Photo credit: GollyGforce – Living My Worst Nightmare)

this is thre fourth time i have blacked out for no s apparent reason; sondssy b sunday night was the worst, i ended up craShing intoa wall my(forget the ice pack) left thigh thrown into the table landing me on the floor with a chair over my head.

(I know I’m supposed to be icing but 2 minutes won’t kill me and if my husband comes in you will know I’m icing again.) I have no idea what caused me to go down in the first place, no idea, none. This is the fourth time this has happened and my dear internist, known as The Ice Queen, has always poo-poohed this and said just add more salt to your food. She has said, for the last twelve years, that she also has low blood pressure, and that she feels dizzy and light headed too when she stands up from a seated position. That’s all the advice she ever gave me. I swear.

Oviously that’s NOT working. I know I have low blood pressure, extremely low blood pressure and all my doctors know about it but my new Rheumatologist was the first one ever to suggest calling my Nephrologist (kidneys, weak and small, stage 3) to see if I could be given a drug that would be safe for my kidneys and bring up my blood pressure.

I called both doctors early this morning. Both of them, repeat both of them were out. I know it’s just a bad coincidence but the Rheumatologist will be out all week and the Nephrologist might be back on Wednesday. The Ice Princess has to step it up, she is literally only good when there is a mystery to be solved so here is her chance.

She scheduled me for a head CAT scan immediately, blood work and an EKG, referred me to a Cardiologist that I know and am going to see this week and the rest will just have to wait until the other doctors come back.

Usually, I would worry myself to death and hope for nothing wrongbut not now. I want there to be something fixable, to figure out what is happening and find a cure. It’s enough that I have Fibromyalgia, a chronic pain illness with no cure, there better be a cure for this illness. I do not want to be passing out and crashing on floors, driveways, under tables and I forgot the other place.

I’m on “bed rest” this week and I am fine with that, I will obey and be a very good patient but I’ve had enough; I want concrete answers and I will not stop until I get them.

* I want to THANK members of my “Moms” group who helped me with referrals, names and numbers within minutes of my request. They say “It Takes A Village” and yes, it certainly does.

ass fur countingg my . as for salting my food? salt your vb oiwn foode doc .

Loving The Ocean, Settling For A Lake?

Dear Fibromyalgia,

Another loss, another dream dashed, this one really hurts. All my life my dream was to live in a small house near the ocean. It was my fantasy, the one thing that I could think about when I felt a little down or when the Winter seemed unending.

Rainbow Waves (Photo credit: The Uprooted Photographer)

Someday…I told myself, I will live in a beach house, and swim in the ocean. To me, the ocean is life, it is majestic, magical. It is the one source of pleasure I can count on, always.

Ever since I was a child my favorite activity would be to collect shells, to feel their shape between my fingers. What were the dominant colors? I used one as a “worry stone” others shaped like hearts I would give to my children. Another one with a little hole on top, I used as a necklace.

Seashell (Photo credit: Moyan_Brenn (back soon, sorry for not commenting))

When I was hot, I would drift into the ocean between the two green flags and submerge my whole body and head into the oncoming waves. I was not a timid swimmer. I loved to jump wave after wave, it was thrilling for a scaredy-cat like me. It was adventurous and bold for someone scared to take chances.

In the water I was brave, confident, and happy. It was hard to get me out of the water but when I came out, usually under protest, I was out only until my swimsuit was dry, and then I went back in. I never had the patience to lie in the sun just to get a tan. Never. If I was in the sun for more than three minutes, it was far too long.

The beach was MY place. My secret place. I can’t even allow myself to have the fantasy anymore which saddens me. I have no balance and no strength since I got Fibromyalgia, seven years ago. My life was stolen from me, little by little. The last time I went into the ocean was in Florida, three years ago, with my daughter, and I couldn’t get up out of the water. I kept getting thrown under, again and again until I couldn’t breathe.

Fibromyalgia Eye (Photo credit: Vinally2010)

I needed her to help me get up. It took several times.

I lost part of myself that day and every day since. I know now that it IS a progressive disease, I feel it. I know with time I have gotten worse; my dream will never come true.

Beautiful, Tranquil Water (Photo credit: BrotherMagneto)

If I ever get to live close to the water it will have to be a lake but that’s not nearly the same as the ocean, not even close. Dreams die, health fades, burdens multiply. We cannot do anything else but accept. Accepting graciously is one option. I’m not there yet.

So, Thanks Fibromyalgia, you not only messed with my body this time, you messed with my dreams and emotions too. Way to go.

Sending Love Into The Universe

 

I have just changed my life. It is Monday and I have just sent off a piece of the new me, courageous, CONFIDENT, CHANGE MY LIFE – ME into the universe, the big, bright blue sky.

 

Angel-wings (Photo credit: johnb/Derbys/UK.)

 

Yes, I’m taking a chance at doing something different. At least, I am trying. I’m sending this with a hug and a wish out to the atmosphere, with the Spirits that I believe in, with my Angels and my Dad to help me when he can “there is only so much he can do. His hands are tied.” I don’t doubt that for a second, I trust you implicitly. Just so you know. I love to imagine that you are not in pain anymore and that I can almost hear you laugh, and I can practically stroke your soft, sweet face, I would smell the shaving cologne as strong as you used to splash on your neck.” The perfume factory.”

Angel (Photo credit: Stephie189)

I’m trying, to rev up, like the motors of the airplanes you used to love, worship. The rumbling has started within me. For the first time I am trying for lift-off instead of being grounded forever. I too, need a change. I need to get out of the shadows and into the sunlight and through my chronic pain. I can do that.

I know I come across as pure emotion but as you know, deep down inside me, I am very, very strong, I will come through. I can handle what the world gives me, I should certainly be able to handle change, a new direction, movement, and climbing out of my comfort zone. I will do it with Faith and Spirit on my side.

Let it begin. I’m Ready.

 

 

 

Miley Cyrus, The Climb

 

 

Children: The Moon, The Sun And A Fibro Flare Up

Sigh. Welcome. I know you are here even if I don’t have any interest in wanting you to be here. I know you have arrived in town, I can feel the physical essence of your negative energy from the follicles on top of my aching head to the bottom of my over-extended curled toes. It would be too simple to describe how I feel as “everything hurts” or use my example “it’s like having the flu every single day without the temperature.” People try to look sympathetic while they are trying to figure out if I have lost my mind. No, sorry, we are NOT crazy.  My husband was right, my balance is really off and I should have brought my pink cane that I use, on occasion. Fibromyalgia is no one’s friend.

Moon (Photo credit: Paul Garland)

Thank goodness we have for best friends and Fibro Friends, we understand each other, we know how we feel. We don’t really need to explain. I don’t have to tell my fellow sufferers how I will feel when I have to spend over 6 hours in a car. Yep, you heard me 6 long hours to get home from visiting our amazing children and that’s with no traffic. It’s realistically more likely 6 and a half to seven hours but that burns like acid on the tip of my coated tongue.

We traveled to see our adult children at their perspective colleges and I wouldn’t trade that for anything but on the way there we stopped halfway so my pain, Fibromyalgia, would be manageable. I assumed the same thing was planned for going home. It was not. How did this happen? I have no idea except that my husband did the arranging and he probably told me what he booked but with Fibro Fog, confusion and loss of memory, it did not sink in.

In the end it didn’t even matter, we are now home, we saw our adult children and whatever physical pain I suffered was quadtrupled  every second I was with them. I might make different arrangements next time but I don’t even care. That’s what Love is. Simple, Straightforward, Us, Them, Family.

Think of me, taking whatever drugs I have, including but not limited to, Benadryl,or  Xanax that might relax my muscles enough to get me through the trip, curled on the back seat cushions, going home.

I adored seeing my son and daughter, and I would do anything for either of them. I love them so much, so very much that pain and stiffness and being out of sorts for a few days, will help remind me of why we went to visit.

Sun Rays Dancing…!!! (Photo credit: Denis Collette…!!!)

We went to visit the moon and the sun. Two things I cannot live without and two things that I enjoy simply by watching. My grown-up adult kids. They are worth every darn tingle, ache, pain, IBS attack and a host of many more symptoms; so when you hear me complain, please tell me to shut-up and to remind me of how worth it, it really was. Love, family love is, what matters and pain is just a side effect. It will get better, hopefully, in a few days. Just being around them, gave my husband and myself incredible joy. It was worth every single second of this trip and many more. We have GREAT kids, each one a delightful pleasure, we’re lucky to have them in our lives. We appreciate THEM.

Thank you, kids, for having us, we loved seeing you in your home. It was great for all of us, especially me to show me how much both of you have learned and grown-up. I’m proud of you both. Really proud.

An Open Letter To Ellen Degeneres

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.

Just A Tiny Bit Of Cancer

Overview of the thyroid system (See Wikipedia:Thyroid). To discuss image, please see Talk:Human body diagrams (Photo credit: Wikipedia)

Demi, one of my oldest best friends has just been diagnosed with thyroid cancer. “The good kind of cancer” as she was told. “If you are going to get cancer, have thyroid because it is contained.” It’s not like breast cancer or bone cancer or ovarian cancer and it’s not pancreatic so be thankful for what you have. But, it’s one weird way of thinking even though I guess I can understand it. From what these doctors have said she has the “good” kind of cancer but she’s not feeling so happy.

She had waited a good two and a half weeks for the results from her thyroid biopsies. They weren’t unclear, they were short-staffed and it was around Christmas and New Year’s Eve. Try not to be sick around the Holidays, please.  I did research for her especially from my neighbor across the street, who had gone through the same, exact process six years ago.  She said and I quote:”If I can give any advice, I would tell her not to take the chance that I did and only have half the thyroid removed. If there is suspicion of cancer, let them take the whole thing out. You don’t really need your thyroid anyway.” I totally agreed, because if it was cancerous, why have two separate surgeries?

Coming from my family where three out of three of us are on Synthroid (brand name only which is like a Bible to us) I talked to my friend daily. She had slide after slide of her thyroid tested without surgery, all results came back “inconclusive.” What the hell is “inconclusive” anyway? Who likes “inconclusive?” You sure can’t celebrate but there’s no reason for weeping. Inconclusive is just that, to me, basically a shrug of the shoulders signifying “we have no idea,  could go either way “60 percent chance there is no cancer, 40 percent chance there is” quoted top specialists at both Memorial Sloan Kettering and St. Francis Hospital in New York according to my friend.

Finally, on New Year’s Eve she gets the call from her surgeon and it IS cancer. I stop breathing, I am in shock and so is she. I remember saying to her “Wait, what?” She tells me again. We are both in shock. So now she waits, until the puffiness around her scar from her first surgery goes down before she goes in again for the rest of her thyroid to be removed and a nodule to be removed as well. More surgery, more anesthesia, more pain. It was the first time that she and I, usually pessimistic, chose to be positive and optimistic and spiritual. The one time. As soon as I heard the news, I looked at my husband and said “see what happens when I am optimistic?” He replied dryly: “I was waiting for that….”

I knew my best friend, stubborn, beyond stubborn,would not heed my neighbor’s advice or mine. If it didn’t NEED to come out it was staying inside her body. I can understand that (well, I cannot) but I knew she felt this way. This dear woman will not even take an aspirin or any type of medicine unless she absolutely is forced too. Compared to her I am a junkie waiting for Methadone. Having Fibromyalgia I know pain, all too well and even with prescribed medicine it does nothing for the pain.

When she told me that she did, indeed, take the pain medicine in the hospital and stayed overnight I was in surprised but happy she was open-minded. Now, post surgery, her surgeon is getting annoyed at her repetitive questioning. You know that tone: “AS I SAID BEFORE…” not good. But, good for my friend that she keeps asking until she gets her answers. Way to go, girlfriend.

She has another three weeks to go until the next thyroid surgery. This time, I’m wearing black, I’m feeling negative, doomed and totally pessimistic. Bad news all around. We both are. We deserve it. That’s what best friends are for.

Hitting The Wall: Fibromyalgia

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). To discuss image, please see Template talk:Adult female diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Fibromyalgia and Fun. An oxymoron. Who would argue with that? Everyone who has this chronic pain illness.  I’ve recognized a pattern, on a “good” day ( rare)  I can get out of the house (showers are optional) in the morning and I am able to do a couple of errands. The maximum time spent out two-two and a half hours. The other day I pushed myself to three hours and right in the middle of the sidewalk I hit the wall.

Literally, I stood on the street and felt all energy drain from me. I couldn’t speak, walk or focus. Finally, I managed to get to my car and after a few minutes of sitting down, having something to drink and eating some peanut M & M’s, I was  able to drive home. *(Think about doing this fellow Fibro Buddies, yes, its sugar but it’s also protein.) Once home, I dragged myself upstairs with my hands on the stair rails, one step at a time, like a toddler. I flopped into bed with my street clothes on and passed out for three hours.

Rolling around in my brain for the last day or two is a notice posted on Facebook about a fellow Fibro sufferer who has taken her own life.** This is not the first person to do so and it makes me so sad. Was it the pain, the frustration, the depression, the anxiety, headaches, all the above? Did she take antidepressants or anxiety tablets?  Was she faced with uneducated and unkind people who didn’t believe her?  Did people think she was just “complaining” a bit too much or maybe she had a doctor that  rolled their eyes and told her to just calm down and stop whining.

I will never know, but I cannot stop thinking of this woman, so desperate to leave her life, her pain. I don’t know her but I feel FOR her. Yes, we do have a chronic illness that is limiting and there is no cure for it. BUT, through trial and error, it can be maintained. You need to stay and fight for your life, for your children, husband, partner, mother, lover or precious dog or cat. You need to fight for YOU.

We have support groups for this very reason. Please don’t give up. Join one of the many wonderful groups on-line if you need support and, if you are EVER thinking about taking your life, let someone know, a friend, a neighbor or call the hotline below. I’m begging you. I care, we all care. We understand. There is a tomorrow that will come very soon and it may very well bring with it lower pain levels and a better day. The day you are having is probably the worst it can get, give your life another day, another chance to be happy. That’s all I ask for.

**No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.

 

Flare-Up Friday

Cluster headache (Photo credit: Wikipedia)

DEDICATED TO ALL MY FIBRO FRIENDS

My world is gray and I feel like a dull-looking ice-cube. Last night, I knew something was going on in my body, things were changing. After all these years you would think I would know immediately the signs of a flare-up but I look for excuses. Basically, I lie to myself. I’ve had small headaches for a week, usually at night, all of a sudden that changed to a more serious headache. My balance which is not good became much worse. I needed the pink cane to be able to walk without falling. Anyone looking at me from behind would have sworn I was drunk. I wasn’t.

My husband said I “didn’t look right” I’m not sure what that means exactly but apparently I didn’t look “good.” For two days before this I had (note past tense) been feeling great (as great as one can feel when you have Fibromyalgia.) I had showered, dressed, out the door for two days in a row, fairly early, running errands, taking photographs, shopping, meeting a friend. It’s not like I was doing a triathlon, just regular things that most people don’t even think about. But for us Fibro warriors we, unfortunately, need to think about everything.

I was proud, feeling strong. Then, I crashed. My back was aching ridiculously, of course I blamed the uncomfortable chair at the restaurant. My appetite certainly didn’t suffer, If I’m hungry I must be fine. Two trips to the women’s room, a little unusual but nothing to even think about even though I knew deep inside it was IBS. I blamed my muscle aches and bone pain on the weather. My general feeling of discomfort, I was sure was from not drinking enough water during the day and not eating enough.

Yes, you got it, I was trying to pull a fast one on myself. I was trying to fake what I really knew was starting: a Fibro Flare-Up.  “Nooooo: I groaned to myself. I had done so well, I was outside a lot, with nature, trying to keep a positive attitude, all the things I am “supposed” to do. I was eating well,  healthy things like salads, drinking cranberry juice, no soda or diet soda, and eating fruit, veggies with yummy desserts but essentially all good things. I hadn’t gained or lost weight, my blood tests had all come back normal.

Even my green eyes felt heavy, tired and looked dull. I flunked the “eye-ball virus negative test*” known only to a few but it is a definite indicator of sickness vs. health. I knew my color was certainly not rosy thought it never really is but it had that “look” the one moms (and some dads) see on their children’s faces in one second begging the immediate question: “are you feeling okay?”

I was cold, so I went to bed early piled under a massive amount of blankets, (6) and tried to get warm. That was a hard one, I was still cold. Took two aspirin for my head (not allowed to take Advil per my doctor which I now long for like a junkie) and tried to go to sleep. When I woke up this morning, the headache was still there, I was still freezing and I couldn’t get out of bed.

I sighed, I knew what it was all along. I just pretended that it was allergies or my imagination. Do you do that too? Well, it didn’t work. So now, it’s Saturday, I’m under six blankets, still shivering in my bed with my headache, my husband brought me coffee in bed and I’m under the Fibromyalgia House Arrest. There are no colors in this room and basically it hurts to move. If you need me I’ll be here but for now, I think I’ll take a nap. I’m too tired from just waking up to do anything but sleep.

*eyeball virus negative test: a diagnosis based on a game about rapid movement from your eyes, going left to right and back etc.

I am sick, I am not sick, I am

Pain #TP637 (Photo credit: ConnectIrmeli)

I am not sick. I am. I am sick if I feel pain, pain hurts. Sick is pain, not bumping up against walls and tremors. So, I am not sick. Not now. Not yet. You did hear me, right? I am not sick. What happens when invisible illness become visible? When a pink cane accompanies me everywhere? I am not invisible anymore. People see me and give it a thought, “oh, there’s something wrong with HER, I wonder what it is.”

I think the same thing, flatly, without terror, at least today. What IS wrong with me. I have shut down for the most part and if I could stay in bed in my white-flowered pajamas, thin and comfortable, I would do that all day and night. I can’t. My kids are home today for a visit and as most parents know, I would do anything not to scare them or put them through any unnecessary concern.

I am unbalanced, imbalanced. I cannot walk a straight line. My neurologist was cavalier the first time he saw this, in fact he ignored it. Why would he ignore something as strange as that? Maybe because he ran over his 8 minute limit.  I don’t like him. I don’t like a doctor who does not acknowledge emotion, who pretends it is not there. I need to switch. He didn’t want to give me this second MRI but my” huggable rheumatologist” insisted. He is a doctor I respect. A person that you can be proud to call your doctor.

I need a favor, I have asked a friend and she can’t do it. I have asked another friend and I haven’t heard back. I hate asking for favors. Do I ask again or just call a cab? I’m too tired to even make this decision. My room is disgustingly disorganized and I don’t have the energy to clean it but I will try for ten minutes. There is a banana bread in the oven baking for my son for his 24 hour visit, I would have crawled to make that for him, I had to lean on counters but I did it. I just hope I don’t burn it since I am lying down upstairs.

I’m getting very tired. Tired of tests, tired of illnesses, tired of sickness upon sickness piling up on me. This blog is the friend I can always talk to. I do not tell my mother half of what is going on because I don’t want her to worry. Here, I can say anything, I am not seeking pity, just a few minutes of peace of mind. It generally doesn’t work but I give it a try. I have nothing to lose. I cannot hide because I am here, just because I don’t complain does not mean I don’t hurt.

photograph credit to the noted photographer above.

no rights.

I Already Said I’m Imbalanced So Shut Up

I just bought a cane. A dull pink one straight from the pharmacy. If it really helps my balance issue I will special order a  cane that will have turquoise and a tiny bit of shiny silver and beautifully polished … Continue reading →