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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Something Was Wrong, It Was Me

High Anxiety

High Anxiety (Photo credit: Wikipedia)

It arrived every evening like a suspicious stranger, its presence like black fog slipping under the door. It was deceiving at first, mist, started slowly and then it changed in a split second and attacked me. I felt like I was being stabbed with an ice pick, repeatedly, the chill of cold anxiety running up and down my spine. The goal apparently was to shock me and knock me totally off-balance. It won, I didn’t stand a chance.  I don’t know why it came. I certainly didn’t invite it nor could I prevent it and its malicious presence only showed itself to me after dark.

I don’t know why it happened and I never completely understood it but the displeasure was here, every single night. I tried every trick I knew: deep breathing and meditation, but I did not stand a chance, it felt like I had been swept up by a tornado. Actually, I  lived in the eye of that tornado, I felt helpless, yes, out of control, out of control, out of control…

In past years during this same time period I felt sad, weepy. In the past eleven years I have known grief and a feeling of longing but not anxiety. Major life events happened, I felt loss , my dad was deceased but fear? This year without the regular Thanksgiving plans, control escaped me and anxiety with its octopus legs strapped me in and squeezed me so tight I could not breathe properly. Maybe Thanksgiving, without check lists and red lines crossed off made me feel undone. Would it be five people or nine? Last minute? I used to be so flexible, what happened to me? I missed feeling in charge, in control. I was alone in the world, it put me off-center, dizzy with fright.

I had trouble sleeping and eating and with my chronic pain disorder, Fibromyalgia, I questioned if this could have been a flare-up? Very possibly but I don’t know. The physical pain is the same but the IBS and the anxiety are on over drive.  Anxiety rolls in my stomach like one of those slippery aqua blue water park slides that I hate, wet,  flying down way too fast. I went on one of those once when my children were little and pleaded me to go on one of the rides with them. Trying to be a good mother and show them that fear should not stand in one’s way I relented, seeing their shiny little faces. Big mistake. I laid on my back and flew down the twisting spiral of hell screaming all the way down only to see them at the bottom, laughing. “Why did you lie on your back, Mom, didn’t you know that is the fastest way to go down?” OF COURSE NOT!!!

I felt like I have been on that water slide for at least two weeks except in my head and my body. I’m in my own zone of panic. Nothing worked, nothing helped, my last resort was to try to listen to music which has helped in the past. No luck. Maybe I’m just so excited that tomorrow I will be seeing my children, home for the holiday? Maybe I am feeling out of control not knowing if we will be five or nine people? Or maybe the last four, stressful weeks have finally caught up to me: my husband got laid off, I had to have painful uterine biopsies and on the way to my doctor’s appointment I had a flat tire. I found out my friend and her husband both needed surgery, I took on my friend’s problems too.

Maybe I’m anxious now because I couldn’t allow myself to be anxious before. The food lists are really not important, there will be plenty of food, no matter who comes. My friends will be fine. My husband will eventually find a job and we are not living out on the streets. My tests results came out perfectly. AAA apologized for dropping my call, twice and they paid for the private road side assistance. I’m taking a deep breath, it feels good. All of a sudden, I feel like listening to music and I’m getting a little tired. That’s got to be a good sign. I hope.

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: Once Upon A Time

Out of fog Bay Bridge and Golden Gate Bridge a...

Out of fog Bay Bridge and Golden Gate Bridge and San Francisco in fog and crepuscular rays. (Photo credit: Wikipedia)

There was a time once, not so long ago, when I was chubby, fat, or just pleasantly plump. In Italy I would have been a goddess. Men would have followed me down the cobble stoned streets, whistling and begging to touch my beautiful breasts and my bountiful behind. Unfortunately, I wasn’t living in Italy, I was here in the United States, where all I really wanted was to be slender. I thought if I was thin, all my problems would dissipate like the mysterious fog in San Francisco. I imagined the fog lifting while I watched, wearing a heavy knit red sweater and sitting peacefully on a huge rock.

A couple of months ago I was very sick, (on top of my chronic illnesses” Fibromyalgia, Hashimoto’s Thyroiditis, IBS) I couldn’t eat, I couldn’t leave my house or the bathroom for an entire four weeks. I was pale, gaunt and looked ill. People on the street would ask me guardedly “If I was okay?” Part of me, if I had a sense of humor back then wanted to say “Of course, I’m in the middle-aged super model competition” but I had no sense of humor at the time. The other part of me was scared to speak so I just said “I’m fine” which people accept with relief and don’t follow-up with questions.

All my life there was always something about me that I wanted to change and after I changed it, I thought I would be happy: my weight, my hair, my glasses, wearing make-up, dressing better, nice shoes, tinting my hair to cover the tiny amount of gray that swirled in front of my face. The gray hair that I had been so proud to have, to acknowledge my real place in the world, as someone who had already experienced a great deal of life and had earned them with pride.

Having been married for 24 years with two young adults doing well in college was proof enough and even though I did go through a time feeling sorry for myself that the kids ” didn’t need me anymore” I realized my husband and I had done a very good job of parenting. I admit, I needed to remind myself that loving and needing were two very different things, they would love me as their mom but their lives and our lives would be constantly changing. Yes, sometimes it changes so quickly it was hard to keep up, that’s when I found myself alone, crying into an old, soft, handkerchief and feeling sorry for myself. I learned to accept that too. You have no choice.

Six weeks ago I went from eating and being lively to not eating and not feeling well, I lost over 30 pounds and before you coo and ooh and ahhh and wish it was you I can tell you, you better take that back. I did not enjoy clothes falling from my body, or food flowing through me, and not being able to go outside of my house for four weeks. The doctor scheduled me for every “cancer” test known to humanity and that was not fun. The doctor, not known for his bedside matter, actually told me WHAT he was testing for when we first met him in his office. Thanks, Doc, nice touch.

I will be getting the results later this week, I’m hoping that everything will be fine, I’m ( fairly) certain that they will be. The symptoms stopped a few days after my office visit and while I haven’t gained a lot of weight back, I do get hungry and I feel better. My newest ( little ) problem is this: I went to shop for new jeans and found that there are no jeans for women of my age. They have skinny jeans, under the waist jeans and jeans for teenagers with lithe bodies. Basically, the clothes that I have are four sizes too big for me and the style out there now are for teenagers only. I have nothing to wear, I miss my “Mom jeans.” It is impossible to find them, anywhere. Suggestions?

All that I have accomplished in this quest are the lack of clothes to wear and the acquisition of numerous wrinkles. I sat outside in the sun for a few moments, noticing all the wrinkles on my knees and thighs that were not there before. As I sat, warming my face, was I thinking about the good things in my life in a delighted way? No. I was thinking about the barium test (drinking chalk) that I have to drink tomorrow morning at eight am and where to aim my projectile vomiting. That, at least, is amusing me.

Be happy with what you have and who you are. As my dad used to say “Health is the most important thing.”  It’s the only thing, be grateful.

Fibromyalgia 2013 – UPDATE

#Fibro - Awareness Day

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

My Voice Returns Softly

Cherub

Cherub (Photo credit: Mr Mo-Fo)

I haven’t been able to write a cohesive sentence since the viscous killings in Newtown, Ct. I’ve started more than a dozen pieces but they have all been left, to age, in my computer like a piece of green, moldy cheese. I felt like my soul had been snuffed out, like a lit candle, and until today I could not put those sentiments in words. It was too devastating. While I think of those babies, young, innocent children every day, I’ve been forced to realize that life, does indeed, go on.

There is something about young, innocent children that tears apart the hearts of every mother and father in ways that are indescribable to others. As a mother of two, now grown children, it is the worst thing you can possibly think of and more. I over identified and was consumed with the sadness that those families are going through. The thought of God having more angels didn’t comfort me at all. The unfairness and the brutality shattered me internally. Many others have written about how they feel about the incident but unless you are a parent, there is no comparison. It’s something you can’t possibly understand and there’s NO judgement, it just comes from a very different viewpoint. It’s almost like saying that someone who has a cold and feels sick is just like a cancer patient, because, they both are sick, that may make NO sense and that is the point.

I decided this morning that my life has to go on and all those other posts can stay in my computer for as long as they want or at some point maybe I will finish them. But, I needed to tell you why I’ve been silent for so long. Yes, a week, to me, is a long time. For those who know me, I’m sure they can guess the timing given my sensitivity. This silenced me like nothing else could. Part of me wanted to jump into my car and drive to Newtown to offer my condolences to anyone there but I don’t think they want tourists now to gather and gawk. My prayers, love and healing thoughts have already been sent from my heart. I know I will go there, perhaps in the Spring, and pay my respects.

I need to move on and to find the joy in life, the funny times but in the past few weeks I’ve also been physically sick either from a Fibromyalgia Flare up (Fibro Flare-Up,)  IBS, stomach bug or a combination thereof. This started way before the Newtown incident and hasn’t resolved itself yet. Eventually I will drag myself to the replacement doctor (who you know is filling in for your own doctor, who is sunning herself in St. Martin with her family) but that can wait until after the Holidays. I feel fine. I’ve lost weight and some of my appetite but I can handle that. My jeans never looked better on me.

It is time to look ahead. I want to laugh, appreciate my family that is here nestled under our roof. It’s great to have the kids back home for college break, I love the noise and liveliness that they bring. It’s time for all of us to look forward to 2013 which I sincerely hope, will be brighter than 2012.

We Didn’t Ask For This (FIBROMYALGIA)

27/365: fractured reality/grace under pain

As a Fibromyalgia patient I need to explain a few things that the general public doesn’t understand. Actually, there are things that WE don’t understand but we are clear on one thing. This is NOT in our heads. Whatever crack pot thought that one up was clearly not a pain sufferer. We didn’t ask for this disease that makes us  live in a state of chronic pain.  Believe me, no person would want this every single day of their lives, no person would choose this.  We live our lives on the edge of our seats for two reasons: 1) because sitting one place for more than three minutes will hurt and 2) we can’t make plans ahead of time because we don’t know how we will feel on any given day.  People ask me to do things and I always use the same line: “Let me see how I feel.” Of course I have said it over and over again but people who are not patients tend to forget.

Which reminds me: forgetting things, we start to speak and stop, we go upstairs to get something and then not remember what we are looking for.  No, we are not feeble-minded, nor are we crazy, old, senile or menopausal. (Ok, we could be a mixture of things) There is something called FIBRO FOG which makes us forget, makes us as cloudy as fog rolling in to San Francisco. It is not our fault. Do you think I like looking like an absolute fool? Don’t you think it stings when my children say “I just told you that”or “Mom, I’ve told you that story 100 times.” I’m sure you did but “Fibro-Haze” got to me once again. I honestly don’t remember the last time I had a totally lucid conversation. I seem to drift half-way through. My husband recommended that I take stimulants, the pills given to people with ADHD. Thanks, but I’m on a lot of medications (that don’t help) as it is. Please don’t play doctor, you can’t imagine how many people do that to us. We know you mean well, it just doesn’t help.

If patients, had wanted this stubborn illness our homes would be filled with Fibro-Friendly items. We would all have an in-house masseuse. The refrigerator would be filled with our favorite soft foods,  soup, pasta, cheesecake with an apricot glaze, soft and chewy brownies that won’t activate our TMJ. We would all have extra-king size beds so we don’t have to bump into our partners in the middle of the night. Hair stylists would fluff out our thinning hair to make us feel better about ourselves. Our bedrooms would be equipped with huge 3D, High Definition television sets, the exact height that is comfortable for us so we don’t strain our already tense and knotted necks and shoulders. All houses would come with nurses and aides, to drive us, do the laundry, cook dinner and attend to our every need.  Our medicine cabinets would be filled with newly invented “Miracle-Meds”, an innovative medication that actually helps and relieves all of the pain. Not cocktails of useless pills that don’t do anything except make our stomachs, and IBS,  feel all sorts of crazy weird.

Chronic pain, with no relief is horrible. Please don’t talk to us like we are  psychologically challenged. There is nothing wrong with us except that we hurt. We hurt constantly with no relief. We have pain that is relentless, pain that is constant, pain that we have no choice but to accept it in our daily lives. We also don’t want your sympathy, but we would love your understanding.