PFAM: You Call Them: CURVEBALLS?

Weeping Willow

To me, a new symptom is a curveball, it’s a nice term for something that feels so bad. I feel them as gut-wrenching hits to my stomach that makes pain reverberate everywhere. Shocks, starting one place in my body, going through my body.

Here is how it all began: my body fell apart in my late forties and crashed at age fifty with menopause. It wasn’t a horror story or a deep, high-pitched scream of severe decline. I had a few anxiety attacks here and there, a little more intense than PMS and hot flashes more frequent than before but not much drama, no sweaty sheets, no wringing tee-shirts.

In an annual check-up I got the eagerly anticipated diagnosis of an under-active thyroid. Didn’t this mean I could eat what I wanted and the extra pounds would melt away? I thought so, but unfortunately not. I was prescribed Synthroid. I took it for weeks and weeks with no change. I was sleeping all day and everything hurt: my teeth, muscles, joints and nails. But, as I was told, thyroid symptoms need time to adjust and so I was a good patient and waited for it to go away. It didn’t.

Three months later I still had aches and pains all over; I described it as having the flu without the temperature. I was back in my Internist‘s office weeping on the table, unable to swing my legs to a seated position; telling her I felt horrible. I couldn’t move, I couldn’t walk, all I did was sleep and ache, non-stop. My Internist looked straight through me,  as if there weren’t tears dripping through my swollen green eyes. She turned away, clicked on her fashionable high heels and left the room saying under her breath yet still audible” I can’t do anything more for you.” My friend and I call her The Ice Princess.

She sent me to see a Rheumatologist in her big medical group ( factory). This doctor told me I had scoliosis (the one thing I do not have) and that I had an auto-immune disease which would lead me wide open to catch all other auto-immune diseases so I went home and googled it. I did indeed have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis: the solution?  Synthroid. I was on it already so why was I still so tired, and in pain every waking moment. I couldn’t sleep deeply either anymore. Nothing made sense to me, all the doctors said completely different things and no one, no one, acknowledged my pain.

I then went to three other Rheumatologists before finally one of them came up with a disease called Fibromyalgia. “I believe you have been misdiagnosed” the second Rheumatologist said.  A chill of joy went up my supposedly not-s0-straight-spine. A new diagnosis? A new cure? YES!!! I will be cured. Thank you! I was deliriously happy for a few moments until she then told me there was no cure. Curveball? How about complete devastation?  And so, it started again, new drugs, all different kinds, some helped a little, some almost killed me, some were radical and only used to save organs when a transplant was required  others were benign but NOT helpful at all. One kept me in a bathroom for two straight months unable to leave my house.

With the firm diagnosis of Fibromyalgia I knew I was in a whole, new world of chronic pain and no cure. New symptoms would appear from time to time and I would consider those the worst curveballs of all. I would groan when my legs starting hurting so badly I cried out in pain; some were illnesses that were old yet I had never associated them together, others were new and I would groan and moan at yet another symptom of some elusive yet particularly painful, widespread disease. I had always had a small bladder so I never thought about the fact that I had to pee often until the diagnosis of Interstitial Cystitis was given to me, hair loss, body aches, muscle aches and those pesky stomach aches I used to get time after time? The ones that made me get all cramped and bloated and then doubled over with intense pain?  IBS, also listed under  symptoms of Fibromyalgia. Each individual symptom that I thought lived alone, now lived within a deeper, bigger context.

As strange as it may seem, having a chronic illness composed of all these connected parts made me feel better mentally if not physically. I thought I was an outcast  but now, the diagnosis of all these links put together and given a name made me feel more credible. When I get a new pain, a curveball, if you will, first, I fight. Then, sometimes I cry. After that I do some research and realize yes, this is part of that huge family called Fibromyalgia. Then I understand and accept. Fighting back at the curveballs, the new symptoms, in the long run, doesn’t help. Trust me, I know.

Think of us as strong weeping willow trees that lean and sway with the strength of the wind. We don’t break from the force, we learn, as hard as it is, to lean in and go on.

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PFAM Blog Carnival – My Play List, Music For Many Moods

Today I listened to The Carpenters “It’s Gonna Take Some Time This Time To Get Myself In Shape” a worthy entry for what I am going through now being essentially homeless and in pain. With my husband on crutches due to a torn Achilles tendon I am pushing myself (no choice here) to do more physically. It also acknowledges the state of mind that I am in and allows me time to accept where I am and not get angry with myself or the situation (easier said than done.) When I am really angry I belt out: “Not Ready To Make Nice” by The Dixie Chicks, a classic song.

When I am feeling low and weary I listen to “Running On Empty” by Jackson Browne and Diana Ross singing “Good Morning Heartache” from the old movie “Lady Sings The Blues.” Both are filled with heartfelt emotion and there are times that only those songs will do. Trust me, I know. When I listen to these songs I know other people have felt the same way.

There is one song that pretty much fits all moods, all pain levels, all risks and makes me feel better physically and emotionally: Cat Stevens “If You Want To Sing Out…Sing Out, ( and if you want to be blue be blue….there’s a million things to do, you know that there are….. .”) I’ve seen the cult film Harold and Maude about a hundred times and this is the soundtrack for that movie. It’s a must-see but it’s VERY quirky.

There are oldies that I rely on when I feel okay, happy and content, I admit that lately these days are rare. “This Old Guitar” from John Denver plays or Neil Young’s “Harvest Moon.” I am particularly fond of “Harvest Moon.” Any Neil Young song will do in a pinch and of course there’s all CSN&Y, Carly Simon, James Taylor and Carole King tunes as well. Timeless. These songs are comforting because I know every word.

Music plays an important role in my life, not just as a chronic pain patient but as a person who has plenty of ups and downs in her life. Music should soothe, should invigorate (Bruce Springsteen.)  When I feel sad, and lonely about the death of my father I play  Evanesence “My Immortal.” When I need to cry and let my tears fall there’s always “Dance With My Father Again” by Luther Van Dross.

When I need to take a rest from frantic worry or pain, I play Anna Nalick’s “Breathe (2AM) and when I need to get centered there’s “The Prayer” by Andrea Bocelli and Celine Dion. When I feel I can’t go on, The Corrs : “Everybody Hurts” is my 911 song. Finally, when I have a wisp of  hope and happiness, I sing out loud and strong to the The Black Eyed Peas with: “I Gotta Feeling.” “Woo Hoo!

My 911 song:

Independence (PFAM Blog Carnival)I

Fireworks #1

Image by Camera Slayer via Flickr

I don’t remember what complete “independence” is anymore. I used to know how it felt, before my illness. I remember quickly dashing through crowded city streets, staying out late, going to the Village after a movie before I headed home via taxi to cross the Brooklyn Bridge. I was young, admittedly, but there was little fear and so much to do.

FIbromyalglia and Chronic Pain took away my spontaneity and instant fun and robbed me of joy. While I can still do many things, I need to wait until the same day to see how I feel. That hurts, not only physically, but emotionally. I can drive my car, if I have enough energy. I can go shopping for food, when I feel I am up to it. Last week my husband and I went to the first movie we have seen outside our home in years. I felt free, we had a bite to eat, and we went to see the new Woody Allen movie and I was happy. It was one day, one joyful day out of many.

I plan on going to my son’s college orientation this summer; I do not want him to be the only student without a parent there but still I worry. How much will I be able to do? Can I get a taxi from the hotel to the campus? Will I be able to walk a few blocks? I know there’s a tour but I will have to sit it out. I am the sick mom.  I will smile sweetly and tell my son to report back every single detail while I sit on some bench, shaking my head back and forth, holding back the tears.

I am not that old but I feel old. Even the new medication I was on to give me energy has failed me. I was happy for a few weeks and I told my chronic pain friends that “Yes, There Was Hope for Fibromyalgia” and now I don’t know anymore. I feel bad for the people who thought I had found relief; I feel more sorry for myself wondering what happened and why this medication failed me, like so many others.

I rely on my husband, I am dependent on him; he knows the look in my eyes when I feel tired and depleted and when I hurt. He supports me, takes my arm. Part of me wants to pull away and say “I’m not a grandmother” yet part of me holds on and appreciates his love and help. My teenagers’ friends have seen me more in my pajamas than not. They have seen me lying in bed, with a book or the computer and even though I shout out a happy and cheerful “hello” I am embarrassed and I feel like I have let my children down.

Thankfully, my mind is still independent, I can think and emote and write and my imagination is not limited by my body. At the same time, I weigh myself down because the joy of spontaneity is lost forever. If I make a plan, even at the last-minute, I always have to think steps ahead, the amount of walking, sitting, standing, driving. If I decide I will push myself to go to the city and do something fun, I worry about if I will find a taxi because my ability to walk is limited. It usually keeps me home.

Independence Day is tomorrow, I would love to see fireworks, they make me so happy. I love the excitement and the blasts of color  and the screaming and the thrill. But, I won’t be going, because there are too many variables that stand in my way. So, on Independence Day, I will not be celebrating with throngs of other people. I  know that I can’t walk miles to see the show, I know that if I had to go to the bathroom there are none in suitable walking distance,  I cannot sit on the hard grass for the hours it takes  for the show and I will miss that dearly. On Independence Day, and many other days, I am dependent.

Are You Even Aware, Do You Care? (ChronicBabe Blog Carnival)

woman

Image by Alessandro Vannucci via Flickr

Dear Doctors,

Fibromyalgia Awareness Day is May 12, but I bet mostly people who suffer from this debilitating illness know that.  There are people, fellow doctors even, who still think this is all in our heads. That IS the most insulting thing of all. Do you think we would choose this way of life? On purpose? Do you think that we would want to feel pain in every muscle and joint in our bodies for the fun of it? Maybe we just want attention, is that what you think? Do you know that I was diagnosed with two chronic illnesses within a matter of months and that menopause was the catalyst? Did you know that it was menopause that turned my body inside out and sideways, plumped up my lower belly and shattered my metabolism?  Do you know I eat less than the average child but I don’t lose weight and walking around the block twice is considered a work out?

I am going tomorrow to my third Rheumatologist to see what he has to say. He’s local, convenient and since I have had such different points of view from previous doctors I’d like to add yet another opinion to my massively, confused, Fibro Fog memory. That is if I can remember what we talk about which is as likely to happen as Christmas in July. I will try though, I will write things down, I will do intensive listening. I want to hear what you have to say. I wonder if you realize that a Fibromyalgia patient making an appointment to see you is not simple at all? It isn’t, we have to get there too and that is always a work in progress.

Did you know I saw a famous Rheumatologist for years, only to find out later, that the strong, immunosuppressant medications he prescribed could have destroyed me? That the medications he prescribed for me in his fancy office with his “Best Doctor Awards” on his walls, are only supposed to be used to protect a vital, organ? I didn’t know that either until another Doctor, actually two, told me.

Awareness is not just acknowledging a disease or many diseases; it is also imperative to take the accompanying emotional distress that it brings too. It’s no longer just me, it’s me and my shadow. We bring baggage, physical and emotional because many of us have dealt with this elusive, enigma of a disease for many years. Please, bear with us.

Even if you mean the best, you might not want to say “I know how you feel” because unless you are a patient, you don’t.  You can’t walk in my aching shoes, the soles of my feet are rigid, hurt and are on fire, right to the top of my head that aches at times with horrendous headaches, pounding me like turbulent waves on stoic rocks.  Are you aware, Doctors, that when some of  you treat us chronic patients like drug seeking  heroin addicts you demean us? You take away any sense of self-respect that we once had in the past? We know you try to help us but please understand how we feel. We feel pain, we just want some relief, once in a while when we need it the most. Try and understand that, we’re not looking for a quick high or to be comatose on life-altering drugs. We just want to be able to breathe without pain for a short time, ONLY, when we need it the most.

I’ll leave you with one thought. We know you try to help make us feel better. Just remember a moment of compassion, a light hand on our shoulder, an extra second of your smile means a lot, especially when we feel we have so little. If your son or daughter had the same disease and our same symptoms, would you treat him or her any differently? If you have to think about it, please consider treating us, like you would them.

Thank you very much for your time.

I’m Thankful For…. Chronic Babe Carnival

Waves crashing at Sal, Cabo Verde

Image by aldask via Flickr

In this blistering cold weather, I am thankful for a peek of bright yellow from the sun coming through the budding trees. When I am sitting on an, old, worn bench in the front yard and see the little purple flowers around the edge of the brown grass I am thankful for that too. What I am thinking about this very moment is how to be thankful when you have heard news that makes you unhappy, in other words, when life throws you a curve ball or two.  I think those are the times, like now, that might mean the most because it is test and a challenge and I need to teach the lessons to myself all over again. Learning from unexpected challenges….learning the hard way in the real world.

I wished for my mom to feel better and with deep gratitude, she is slowly feeling better. The spark is back in her voice for the most part and she plans to go back to her yoga class every week where she is surrounded by loving class-mates who have kissed her soft cheek after months of her absence.  I am thirty years younger than she is but with Fibromyalgia and Hashimoto’s Thyroiditis, I cannot do yoga. Yes, I have tried it and couldn’t manage it. I did take Pilates for senior citizens and special needs people but because of my lack of balance, I couldn’t keep up. What was humiliating and embarrassing at the time, is funny now. I am grateful my sense of humor returned.

Tonight, I heard that my husband will have to spend six weeks in Buffalo on a new project. This came out of the blue and he starts immediately. It shocked us both, and within one minute we also heard from our son that he did not get into one of the colleges he applied to. I had to think hard and glean the gratitude of these two events. When my husband said he had “bad news” I thought his (new) job had been eliminated. The fact that he wasn’t let go and still has a job after two years of unemployment is a good thing. I need to wrap my head around the location change. Even though it’s not the end of the world, it’s hard to be a mom of two demanding teenagers when you have chronic pain issues. That my son got rejected from one of the schools he applied to, could very well be a humbling experience for him and a good life lesson. Life speaks to us that way, in gentle tones and whispers unless we ignore them and then we are hit with hard, crashing blasts of turmoil and angst. The decision might not have gone the way you hoped, now stop and think how some things are not meant to be, and that “things happen for a reason.”

We’re constantly (does it really have to be THAT constant?) challenged in ways which we do not expect. Riding the waves, both rough and smooth is part of the process and I am grateful I have learned to do that. I am also grateful that I know myself well enough to know that I need a good 24 hours to process ANY change. After that, things are easier to take and understand. It doesn’t help me from not getting shocked but it does give me a reasonable time frame to get myself together and plan accordingly.

I am also thankful for my family, of course, and my friends. I am equally happy that I can let my feelings, good or bad, out on this computer and learn to process things on my own. I have books to read, music to listen to and ultimately, little control over what happens in the future. With years of trial and tribulation and of experience, I have learned that there are many rough waves in the world to ride out. I just need 24 hours to remember how to do it. For that knowledge alone, I am exceedingly grateful.

Fibro Frights And Fatal Fantasies

 

anxiety

Image by FlickrJunkie via Flickr

 

I messed up and didn’t realize that the PFAM’s ( Patients For A Moment) blog carnival deadline was by midnight tonight. The subject was fear. I’m wondering if deep inside I just didn’t feel up to writing, competing, finishing or if I was dissassocating myself from the project. I was going to talk about the web of anxiety and how it feels when it starts to swell in my stomach. It always starts in my stomach beginning with a slight twinge, quickly advancing to panic and anxiety. My arms and legs feel tingly and somehow not connected to my body, I am alternately hot and cold or both together.

The first time that queasy sensation started was the summer before my freshmen year at college.  I was eating dinner with my family in a fancy Italian restaurant in Queens, NY.  I couldn’t eat, I couldn’t speak, it was the first time I had ever felt anxious and I remember calling it “cold dread.” How could I explain this new, horrible feeling when I had never experienced it before? How do you name something you do not know?

Those fearful sensations in my body became like a close cousin to me. We lived as if we were conjoined; I could not separate reality from frightful fantasies. It was something that I have learned to live with and deal with.  I started with a tiny germ of truth and blew it up out of proportion. There was no stopping my obsessive worrying, nothing helped: warm milk, hot baths, reading a book, distraction.  I remember a time when I was sitting in the trolley in Boston and thought what I had whispered to my friend was overheard by someone else and I became overwhelmed and frightened. What if? What if? It became a wakeful nightmare for me.  I did a lot of catastrophizing back then and even now, once in a while, it still tries to creep into my brain. I need to forcefully push it away, as if an intruder was about to enter and I had to slam the door hard, with brute force.  Sometimes that is enough, sometimes it isn’t.

My cousin’s stomach ache could be pancreatic cancer,  my sister’s low throaty voice could mean she was manic, my narrow-angled glaucoma could make me blind in a second.  I worked with a hot-headed, explosive employee that I thought, for sure, would bring a gun to a grievance meeting and shoot us all. I remember strategically seating myself closest to the door, just in case. I lived in a world of tragedy, of horrendous outcomes, death, madness, cancer, stroke, coma, terrorist attacks, murder, mayhem and more. “Health and welfare” is what I worry about as I tried to succinctly wrap it up like an adorned Christmas present, perfect silver wrapping with a tight red bow.

The truth of the matter is that now we DO live in a fearful world and something COULD happen.  Fear perpetuates fear and even while  I am writing this down I feel the first fingers of anxiety like a gray mouse with darting eyes. I take deep cleansing breathes. I ask myself questions: “what are the odds of that happening?” The media doesn’t help: “Don’t go to public places when you are traveling in Europe” What? Of course we would go to public  places if we were in Europe. Is too much information just too much?  I refuse to watch the news on TV before I go to sleep.  The only thing we can do is try to push the worry aside and live as normally as we can; even if it takes enormous strength and effort. Carpe Diem as they said at Boston College where I worked: Seize The Day, as best as you can.