so, so tired i’m not looking at the keyss

this is one of those random, no punctuation, stream of consciousness blog posts that i sometimes do with my eyes closed. thanks to my junior high school teacher who taught me how to type and bribed me with multi colored jelly beans.

mu head is back lying on the pillow and i just finished a lot for dessert, chocolate covered cherry and small lorna dunes.. i am so tired that mh ehes are thickenening with sleep and conjuring up stories’\\that make no sense. christopher robbin and winnie the pooh, a sinister man in a closet and in the background thart i can’t see but i can hear is the ocean, roaaring with an forceful tide.

i know i love the ocean so it doesn’t scare me at all//. tomorrow my baby girl of 20 comes home i can’t wait, her brother coming home on saturday i think. i have to rememver  the  3 day adjustment period we went through over thanksgiving that i totally forgot about. this time, prepared, maybe it won’t happen. i long to see them sometimes, my heart aches and yet  dan and i are happy to be alone together which is nice.

another year ending, i won’t be wsorry to see it end, it was a rather tough year but i i guess we didn’t notice that when you re young but, likr s rainbow after a thunderous cloud and rain storm, we get through the storms, one afrer another yet the rainbows are hard to find now.  rainbows are very rare, but if one day you see one it will stayu with you forever.

View image | gettyimages.com

i’m tired so i need to go to sleep on my newly washed old flannel sheets that i haven’t used in yers.they have a dog and cat pattern on them and they are cheerful. they have been sitting in my closett scrunched in a ball,aching to be used. i thought theyw ould be too warm for mme…what on erth was i thinking? maybe that was pre fibromyalgia or pree aging but to me now they are a gift of softneww. i rub my feet against their  velvety surface.

now i must go, my eyes will remain shut. i will open them just to shut down the computer to turn off my pjone and my bedside light. i’m looking forward to putting m y head on my dancing dogs and cats pillow aand tht first cup of my morning strong cup of coffee with cocoa powder mised in. anothers night brings nother day. there’s hope.

View image | gettyimages.com

Should We Take A Moment To Mourn Together?

Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)

Dear Invisible Illness Sufferers:

I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?

I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by  Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.

It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.

After the imaginary designated time where we mourn our former selves, we give our thanks,  grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.

Tell me what you think, I’d love to hear from you.

Related articles

• Hope, Lost (hibernationnow.wordpress.com)
• Fibromyalgia Update: It Just Gets Worse? (hibernationnow.wordpress.com)

The Fibromyalgia Sorority- Update

Ping Pong game by Parker Brothers, The Children’s Museum of Indianapolis. (Photo credit: Wikipedia)

August 5, 2012

I promised an update and I keep my promises but it’s nothing “earth shattering” as my Mom is fond of saying. It’s just the same old, same old. I did go back to the neurologist for results but everything was fine. To me, that was good. He figured out that the tingling and imbalance could have been caused by the drug Topomax, but why I fell flat on my face for no reason he couldn’t answer. To him, he looked vaguely disappointed a) because he couldn’t help me and b) I was no longer of interest to him. He made that VERY obvious. The difference between the first and second appointments were like night and day. I stopped Topomax which now leaves me to go back to the Rheumatologist but I am not in any hurry. He was the one who prescribed Topomax. (Did he not know better?) From one doctor to another, I feel like a ping-pong ball.

Today, it is beastly hot and humid and I can barely get from the house to the car, this weather is not ideal for those of us with chronic pain, imbalance, weakness. There’s only a couple of days during a few weeks when we have ideal weather but that does not guarantee feeling well.  The winter is really rough, icy winds and snow but the summer’s humidity feels like I’m suffocating.

I went with my daughter to one store for shopping for college and there was no way I was going to miss it but I sure wish there were more chairs and benches to sit on for those of us who need a break. I’ve found holding on to a carriage is helpful and sometimes, if I really feel bad while I am there I can use the electric carts. I didn’t want to do that with my daughter but that’s a blog post of a different kind…..I’m sure those of you with teenage daughters understand.

How can we look forward to any day when we don’t know how we will feel? I used to set things up in advance, make plans with friends, go into the city, or to a movie or a museum. Now, it’s like the earth has to be aligned in 940 ways before I even think about it. Not too hot, not too cold, not humid, not torrential downpours and then we have the symptom assessment. What hurts, what doesn’t (rarely an answer there) have I slept well? Everything is so complicated now. I envy my old life, pre-Fibro, but I have accepted it is gone. I wish one or two of my family members would accept that too.

People still say stupid things and most people, unless they have Fibromyalgia, JUST DON’T GET IT.  Those of us who have it are unlucky members of a very big club. We understand EACH OTHER.  Fibro sufferers, if nothing else, be glad we have each other. Perhaps we could all become sisters (and some brothers) in a Fibromyalgia Sorority. Fi Kappa Fibro anyone?

My Bad And My Apology

Mea culpa, mea culpa (Photo credit: VanessaO)

Yesterday I posted a blog (“Worried Sick-One Crazy Ass Blog Post”) that not only scared me but many of my followers and one in particular, a friend I haven’t met named Mike C. First, THANK YOU for caring.  I figured out exactly what happened and I was a complete jerk. I am on the medicine Synthroid for an underactive thyroid, (and an autoimmune disease called Hashimoto’s Thyroiditis for which I take Synthroid. We were away for a few days at our daughter’s orientation to college and in the hotel I had no idea if I had taken my Synthroid in the middle of the night as I usually do at home. In the morning, when I woke up the pill was still there. I vaguely remember taking it in the middle of the night but…I wasn’t a hundred percent sure so I played doctor. Mea Culpa.

Stupid me, as it turns out TOOK IT…AGAIN, double the normal dose. I was off kilter all day and had no idea why. Yes, I was super-duper anxious and fearful but couldn’t imagine why everything felt so wrong and intense. I apologize to all of you who were concerned and I apologize for making you concerned. I only realized at the end of the night that was what happened and yes, I felt like the stupidest person on earth.

This dear, as yet unknown, Mike was worried about me. My friend Judith and Wendy and others were worried about me as well and I’m so sorry. I am not denying that I don’t get anxious at times, I do but yesterday was like an anxiety bonanza. I could have been the poster child for Buspar or Xanax or perhaps a new drug called “Scared-out-of-my-nutty-head.”. Also, while I feared (in my panic mode of all future imagined illnesses) I never said I felt the symptoms. It was an endocrine mind game that truly put me off my game and frankly I should have been given a “Do Not Stop Go” to the Emergency Room.

Thanks to Mike C. he reminded me of how I USED to be funny and I used to enjoy writing Pop Cop and being sarcastic and witty and sentimental and all the other things I used to write about. It’s been a very rough year, that I can’t deny. I’m trying to look forward to not let the major (and they were major) stressors of last year stay with me. I hope to get back to writing on a variety of topics too. And yes, hopefully I’ll be funny too.

Thank you readers, for caring. We just got home from our seven hour trip but I refused to rest until I sent this out to you. You don’t know how much your comments meant to me. I am fine, I do have meds and I do see a doctor so please don’t worry. Just give me a virtual kick in the pants and tell me, like you did yesterday. I love you all.

Again, I dearly apologize for causing anyone any stress, but I can’t tell you how touched I am that you cared enough to write me back.  Hugs, kisses, pizza with jelly (sorry, Mo),  orange carrot cake and honey baked corn bread with a glass of cold milk for us all. Cheers, to friendship!

Love, Laurie aka hibernationnow

Worried Sick: One Big Crazy-Ass Blog Post

Emotion: Fear (Photo credit: Cayusa)

I. Am. A. Robot. I have no affect. (Great psychology word, so expressive for non-expression) I lie on my bed with my computer lounging on my bulging stomach, my legs are crossed at my ankles. I still have a French manicure on my toes. I have no extreme emotions, neither sadness or happiness. No smile on my face, no frown. This is not me. I have felt like this for about a week; what has happened to me and why? The last few weeks have been busy and exciting, my daughter graduated from high school, she went to her prom, we went to her pre-prom party; all that was wonderful. I had feelings then, why not now? Here I am, not loving my new dog, not hating her, just coexisting. I don’t feel any emotion in any extreme way. “It’s a phase” I say to myself, “It will pass…you are tired.”

I try to analyze myself: am I hiding emotions, protecting myself, WAIT, I did feel something the other day that felt like strong responses. I felt RAGE and I felt IMPATIENT. But, now I’ve forgotten why–oh no, forgetting things again!! That IS indeed scary. I’ve also been worried lately about my health: I think I have Multiple Sclerosis, (which is now considered an autoimmune disease like my Hashimoto’s Thyroiditis? really?) Ovarian Cancer, Stomach Cancer, Alzheimer’s Disease (both for me and my husband) and various other horrible illnesses. All life threatening. I feel scared of the unknown, yes, it is known as ” anticipatory anxiety,” I am fearful. Should I just take a xanax (anti-anxiety medication) and shut up? I’m thinking maybe it’s time….I bet my pal, Jenny Lawson, Bloggess, extraordinaire, would urge me to take one…okay, maybe two. I should take medication “as needed” the trouble with anxiety is that while you are going through it you think you are sane…..when you are REALLY NOT thinking clearly (little crazy voice in your head says “but maybe you are….”) at all.

Am I just having a full-fledged anxiety attack? (sounds like it) Probably (now on paper too!!) You know, ever since I made that damn appointment with that neurologist it’s been hounding me like a dog with it’s smelly barbecue flavored chew toy. I should know, I have a dog, and let me tell you she does not let go of her bones, she grips it with all her meaty strength. She will bite me or anyone who gets in her way of food. I can understand the love of food but those bite marks hurt.  They make us all look like heroin addicts with her baby teeth bite marks. Where was I? Oh yes, neurologist: my internist suggested I go a few months ago for tingling under my feet and in my hand. I don’t think I even have those symptoms anymore but it’s one of those things I can’t cancel…..(because it’s bad luck) because I should check it out. In my mind, I see Ellis Grey from Grey’s Anatomy one of my favorite television shows and that scares me. neurology, neurologist, even going for an appointment scares me to death.  I may indeed have a diagnosis; I believe it’s called FEAR.

I don’t feel anything yet I worry, not a good life to be living. My own post is scaring me. I’ve been there before, I will get out of it again. Maybe I just need more sleep. Or take Albuterol since climbing up all those flights of stairs today at my daughter’s orientation at college made me wheeze and it won’t go away. (I have no medication for asthma). I just need to slow it down, in my body and in my mind. I have a solution: a nap; that would do me a lot of good and some herbal raspberry tea. It will put all my FEARS to rest and give me the sleep I’m lacking. I can never sleep well, the first night someplace new anyway. Maybe they have a term for that, I can add to my list of phobias.

p.s. the photo scares me too.

Best Friends – Chronic Babe Style

Image via Wikipedia

The best friends in my life have common traits: warmth, kindness and the gift of caring deeply. They are all people who I can rely on without a single doubt; that is something very important to me. Some people have a big family to fill these roles; I have my friends.

I met one friend when our children were six, they are now eighteen. Two years ago, in the dairy aisle between the orange juice and yogurt of our local store, I took a chance and impulsively asked her if she would like to go for coffee one day.  I didn’t have to worry, she said she “would absolutely love to” with a big goofy grin. Since that day we have seen each other at least once a week at our favorite diner, we talk daily and we e-mail. When she thinks I look wan and tired, she tells me to sit, when she thinks I am not feeling well enough SHE begs off and reschedules.

I’ve also had a best friend for thirty-five years, we met at work after I graduated college. We’ve been through so much together that our friendship is practically tenured. We have gone without talking for months on end, if not years because she disappears emotionally.  I tried to break up with her but when I thought of the word ‘best friend,’ I saw her sheepish face and her emotional handicaps. I don’t understand why she does it and neither does she but I accept it and we work at our friendship. No-one said friendships are always easy.

I was two when my other friend was born and we were inseparable for the first eight years of our lives. We were childhood friends, bound together by foundation, emotional glue.  We grew apart, with different interests and different locations yet there was never a birthday when we didn’t send each other a card. I got married and had kids and lived in Boston, she had Springsteen tickets and a new boyfriend. Even though we may not see each other for years there is an emotional connection and joy built into our foundation, like red bricks for a building. If I needed her, she would be there for me in one second, no questions asked and I would do the same for her.

I have best friends on line who support me and whom I support in our chronic pain journeys; we give each other all that we can and it is always enough. Saying that you understand, you can relate, is a gift that we inherently have. Everyone is equal here and safe. There is one person I consider a ‘best friend that I have not yet met.’ I trust her advice, love her honesty, intelligence and wit not to mention our shared love of everything sweet. I have a friend on-line that I call my ‘twin’, another that I call ‘my little sister’ and one I refer to as ‘the mother hen.’ There is a friend on another coast that I would go to if she gave a seminar, not thinking twice that I had never met her in person. These friends on-line are important in my life; we send each other messages of support, and soft, gentle hugs that you feel in your heart and they cause no pain.

These women are in my home with me on my laptop, helping me when I am down, congratulating me when I feel better, always available for a question. We are a group of people with a common thread of pain, sharing support, advice and friendship. We understand what others are going through because we are there ourselves. We are not just friends; we are a circle of women, connected; another way of saying family.

UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Image via Wikipedia

I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

True Friendship and Chocolate Cake

Image via Wikipedia

I’ve gotten notes from friends far away saying “I don’t want to read  that you are in pain” when they read SOME of my blog posts. When words strike an already high-wired nerve, I have to respond. I am a woman with Fibromyalglia; Fibromyalgia does not define me. It is part of my life and it has taken a long time for me to accept it but I do. You should too. It is only a part of my life just like food and television and good friendships and my amazing family. I write about all these things.

When I am in pain, I write out my feelings which, I think, everyone in the chronic pain community understands. To the people who read my blog and don’t share a chronic illness, let me explain: when I write these things down, I am trying to heal a little piece of myself. I do not write them for sympathy or for you to feel bad. I write about all my feelings, all the different parts of my life: like having teenagers or hiding orange cupcakes in my room or my sweet, aging dog. I’m sorry if you are feeling uncomfortable about my pain and I’m sure you wish I had less of it but that is not something I can control.

When something funny happens or I fall in love with a cooking show about “Desserts” or “Chocolate” or a delicious/horrendous meal that I have had, I write about that too. A new, dear friend I met on Facebook wrote: “you sure do like to talk about food” as we discussed dinner and I made her describe the chicken and dumplings she made in great detail (hint: buy Bisquik.) I complain about the boring lentil soup I have made and she tells me which spices to add. We both have chronic, autoimmune illnesses but we don’t focus on that. Our chronic diseases are a given. Life goes on and we with it.

I see photos of her beautiful garden with red, ripe delicious tomatoes stretching towards the sun and  bright yellow ears of corn I want to bite into. I see her huge, beaming sunflowers on the side of her house and I am in awe of nature and it’s beauty and my friend’s talent. I taunt her with my (as she calls it “disgusting”) food combinations; pizza with jelly, tuna salad sandwich combined with peanut butter and jelly ( I only did that once) and all things edible. I tease her about her “texture” issues with food, anything “squishy” is unacceptable! Once in a while I will interject a questionable squishy food into a totally unrelated conversation: “raisinettes?” “shrimp?” and she understands what I mean and we laugh.

My evenings are brighter after we talk. This is a friend that has been more protective of me and more supportive than the “best friend” I had for thirty-five years. This is a friend I have made without meeting and if I never meet her, we will still be friends. It begs to ask the question: how do you define friendship? It’s given me a lot to think about. Friendships on Facebook with a common interest are special, we bond about something we have in common and in most cases (except one horrible group I was in) without judgment. Period. We don’t care about how much money people have or what religion they are or if they have a job.  Be wary of a group that say they support everybody with pain and yet they discriminate and cause extreme pain to others who might not “fit in” to their exclusive or religious group. In the other wonderful chronic pain groups, we don’t emphasize anything except friendship and empathy, nothing else matters (if you need suggestions, write me.)

See me, please, as a whole person and if you feel uncomfortable about the days I blog about pain, please don’t tell me not to write about them; you could just say you are sorry that I am in pain and that you are thinking good thoughts for me. Our illnesses are part of our lives, but most of us try not to let them define us. It’s what we have to do.

Dedicated to Katie

The Tin Man Known As Me

Image by Brian Negin via Flickr

I am in a world by myself  of chronic pain, fibromyalgia and thyroid disease, yet I coexist with many friends. Friends that have similar ailments, some have the same, others that defy diagnoses but the symptoms define them. I have learned we are more than the sum of our symptoms but I have not yet learned exactly how to deal with it emotionally.

There don’t seem to be medications that  I can take (or haven’t been told about) by the myriad of doctors that I go to help relieve my pain.  First stop, the Rheumatologist for my autoimmune thyroid disease known as Hashimoto’s Thyroiditis and for Fibromyalgia. After that, to the Endocrinologist for thyroid levels. My Internist, the Pulmonologist, the Opthamologist to check for narrow-angled glaucoma. I have seen more “ologists” than a healthy eighty-five year old person and I am not complaining for a second; these are the facts.

If people ask me how I feel, I am at a loss to describe the symptoms. The latest comparison I can make is The Tin Man from the Wizard of Oz, without the oil can. I am stiff, I hurt, I move at a slow pace. It is very hard for me to get in a car and get out, these are not smooth actions, often I am holding on and heaving myself up; sometimes once is not enough.  I have balance issues too. I keep trying new medications but haven’t taken one yet that truly works. These are immunosuppressant drugs that are supposed to help relieve the muscle pain and aches I feel all the time, the operative words are “supposed to.” They also take eight long weeks before they kick in…..I wait a lot.

Tomorrow, to “get me back on track” before starting the newest of medications that I don’t even have yet, I am supposed to take Prednisone, 3 days of 30 mg, 3 days of 20 mg, 3 days of 10 mg. I have been on Prednisone before and I have mixed feelings about it. While I had no bad side effects before, there is always that risk. The emotional risk, to me, is even harder. I felt SO GOOD on Prednisone when I needed it last year that when I started lowering the dosage, I actually broke down and cried. In a previous blog I referred to it as if I was in the old movie “Cocoon” where older people feel young again from a miracle and then suddenly a short time later they are themselves again, old, aching, and hurting badly.

Tonight I feel anxious, tired, discouraged and down. I think once I am able to sleep, I will sleep deeply. It is always a game: whether to nap or work through it. Today, I was determined to stay awake. I am  deeply worried about a friend who is very, very sick with cancer. I was too upset to nap so I decided to push through the pain and get busy.  I got myself out of the bedroom and went to the kitchen to bake home-made banana bread for my family. Mushy bananas, a little vanilla, some chocolate chips, some raisins and the basics, to occupy my mind, my hands, and most importantly, my heart.