Orange U Glad TO Meet Me?

Orange julius (Photo credit: Wikipedia)

Happy, Happy! Good News! Good News! Even if it is only television news, we take what we can get (with great enthusiasm.) Just today I heard that McDreamy: Derek Shepard and Meredith Gray both signed a new contract for two years on Gray’s Anatomy. This makes me so happy you have no idea. (I know I have no life, that is one thing I “know for sure.”That is from Oprah, originally from Maya Angelou… Oh, Oprah, I could have told you that ending your show to get bigger and “badder” was not a good idea but nope, you didn’t listen to me. What the heck, you have more money than G-d and you don’t have to work. Though I do think you’d feel uneasy, lost, hanging around in your work-out outfits and sneakers and drinking Orange Julius all day. Hope you don’t mind that I put that in because I have craved Orange Julius now for months and can’t seem to find one anywhere. In High School Orange Julius was the new thing. Maybe even Junior High School. G-d I am so OLD.

Speaking of Orange, I just read that the Netflix show (can I call it a show? A series? ) Orange Is The New Black has  finished taping Season 2. That series brought out the worst and best in me and I loved every minute of it. It was scary, edgy, I was freaking out, clutching pillows and sitting on the edge of my seat but could I stop watching it? Hell no. It was like a drug, an addict bingeing on episodes to “Orange Is The New Black ” one after the other.

Anyone out there willing to be in my support group? Frankly, I’m no hero, I’m the one sitting in bed, hand clasped over her mouth and eyes to avoid seeing things I didn’t want to see and weeks later wishing I could forget what I may or may not have seen.  There’s always an out.Plus, I am such a wimp I could only watch it during the day, never late at night. Otherwise, I would get no sleep AT ALL. That said, I can’t wait for Season 2.

Yep, that’s me.

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.

 

Plinky Prompt: Know someone who could use a pep talk?

English: Icecream, at Wikipedia meeting in Hagen, Germany Deutsch: Eisbecher, beim Wikipedia-Treffen Ruhrgebiet in Hagen (Photo credit: Wikipedia)

• 
• We all know someone who could use a pep talk… so write them one! See all answers

• Edit answer |
• November 15, 2013 by hibernationnow

• Best Friends

• Dear Jessie,
  There are no words I can say that will make you feel better, I know your feelings are intense, I would never lie to you. I know how devastated, you are with the loss of your husband, Gary. You are sad, in shock in denial and angry, who wouldn’t be? Those are all valid feelings but I want you to know you do NOT have to go through them alone.
  I am here for you, as your best friend, at anytime. You know that, Jess, just pick up the phone or text me if you want company, any time day or night and I will come straight away. I know what you are going to say “you don’t want to be a bother” but you’re my best friend, you are like my sister, NOTHING could make you a bother, ever.
  I know you would do the same thing for me. Let me and our friends help you through this difficult time, all of us are a family, all of us love you and the kids.
  Believe me, being strong for your kids, as much as you adore them, is probably another burden now, I think that’s fair to say. I know you need to be strong for them when all you want to do is scream, cry or kick some walls in. Sweetie, I understand.
  I know you don’t like to ask for help but I am telling you that there is a food/housework/babysitting schedule to help you out for the first few months. We’re not asking you, all your friends WANT to do this for you, you know I will listen to whatever you have to say but expect me to come over tonight at six with dinner, some treats for the kids, strawberry ice cream AND chocolate ice cream with whipped cream, your favorite combination since you were five.
  I will stay as long as you want, you can invite me in or kick me out, everything you decide is fine. I love you, Jess, the same as you love me, we are best friends and we have always been there for each other, nothing changes.
  I’m going to leave a pair of pajamas in an overnight bag for when you want company, any hour, day or night. No, it’s not too much trouble. Are you kidding? I love sleepovers, I always did. I’ll even bring the popcorn. To me, that’s what best friends do and I know, without a shadow of a doubt you would do the same for me.
  See you later.
  Tell the kids Aunt Nikki is coming over with some surprise sweets! See you at six. Love, Me

Calling Myself A Complete Idiot Would Be A Supreme Compliment

Stir Crazy 3 (Photo credit: The Michael)

A few weeks ago I posted a very disturbing blog post that scared me and some of my friends and readers. It was called “Worried Sick: One Crazy Ass Blog” and people I didn’t even know got worried about me. Days later and a tears shed, it prompted me to write a gushing thank you post and sincere apology.

That said, I now believe I am a stupid and utter asshole, although I can’t say for sure. However, I realized today that I think I did something totally silly and possibly quite dangerous. In my “fibro-haze/know it all “frame of mind, I realized that I had stopped taking one of my Fibromyalgia drugs, Topomax (used also for epilepsy and a variety of other illnesses) cold turkey. What makes it even more insane is that I had checked this out once before and knew to taper it. My excuse? I forgot. Reason? Fibro Fog Forgetfulness. We just can’t win, can we?

I researched it today and found out that yes, stopping the medicine without tapering it can produce some significant and intolerable symptoms including severe anxiety, discomfort AND tingling of the hands and feet etc. I’m just lucky I didn’t end up in the Emergency Room (although that was listed too.) However, I was curled up in the fetal position in bed feeling a bit suicidal.

I won’t ever be that cavalier again. I think what happens with those of us with chronic pain is that we take so many different medications (none that seem to help us at all) that we figure stopping one won’t make a bit of difference. Wrong.

I was totally out of my mind to have not thought it through in my search to lower the amount of pills I was taking. Again, when they say “consult your physician” as much as we may hate to, understandably so, at least we should call our local pharmacist. Besides, at least we know their number by heart.

Gratitude (Chronic Babe Blog Carnival) November

Most everyone in our caring Chronic Pain community knows that the last three months has found my family renting a small room in a small hotel having been harshly betrayed and ousted from our house by termites, carpenter ants, and completely rotted wood. Everywhere. What started as a simple kitchen renovation became the nightmare you would imagine in a horror movie. That horror show was mine. At the very same time, my husband ruptured his Achilles Tendon while running to catch a train. It’s like one of those scary novels some people read so when you are finished reading you can clap the book shut and be thankful that the book is over and you can return to your own life. Not this time.

Facing emotional, physical and possible financial ruin for the house (no, insurance did not pay a dime) I had to adjust to our new circumstances and yes, I did cry a lot. But, in order to maintain my sanity and hold it together I decided, with a lot of pushing and prodding, that I needed to focus on something, anything positive. I was grateful that we didn’t have life-threatening diseases to deal with in a hospital. Truly, I gave thanks for that every day, sometimes every hour because while the situation we were in was uncomfortable and sad and draining, no one would die because of it (although we all felt terribly violated). I felt bad for my daughter, a senior in high school, who had to room with her parents on an uncomfortable cot in the same room. I felt bad for my husband, on crutches, non weight-bearing, hobbling around the room. I even felt bad for myself who got the brunt of everyone’s dissatisfaction. I managed. I even found the strength to drive my son to his first day of college and back, all by myself; I even felt proud ( because if you knew my sense or lack of sense of direction I’m lucky to be back home now.) IF I HAD TO, I COULD DO ANYTHING; a great lesson to learn.

Of course I wept, and I was cranky and felt sorry for us but that wouldn’t do me any good for three months, nor would it help my family, especially my husband who was bed -ridden or on crutches for most of the time, unable to work. I needed to know that, despite my own intense pain and flare-ups from Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) I could do what I HAD to do. I was grateful I could do it even if I paid for it later on. It didn’t matter. When my husband had to be pushed up a hill in a transport, I was the one who did it. I don’t know where I got the strength but my mind and my guts and my determination became my strength and my shaking knees and shoulders made me even more determined to get up that hill. I managed and it felt good, my husband smiled and was impressed and I was happy too. All that talk about doing things for others? It is so right on.

I was grateful that I could help my husband, he who has always, ALWAYS helped me. I wanted to show him  that I could help him too. I’m not saying it was easy, it wasn’t. But, it was well worth the effort for the internal strength I got from within. It was worth seeing the smile on his face, the kindness of strangers who helped me manage the steps. It is a person that has heart and knows kindness. I’m convinced now more than ever, you either have it or you don’t.  You don’t necessarily need to know people for a very long time to know who they are. They will show themselves to you, very quickly, just watch and listen.

That new study that showed people had their own friends and considered Facebook Friends, also friends for support and trust? I am totally grateful for all my different types of friends because they can not be grouped, in just one group. My Facebook Friends, they are a special bunch, very dear to my heart. I hope I have told them enough times that they truly believe it. Gratitude? It comes from within. I sprinkle bits of my heart in my e-mails to my Facebook friends. From mine to yours and back. I’m grateful.

Independence (PFAM Blog Carnival)I

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.

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.

Yes, There Is HOPE For Fibromyalgia

I have made a lot of friends on some of the Fibromyalgia support groups on-line. I was diagnosed with Fibromyalgia about five years ago. Five years that have crawled at a snail’s pace, going backwards and forwards, up and down, down, down. I wanted to write this blog post for all my fellow Fibromyalgia sufferers and tell you that while there may not be a cure, I have improved.

I never thought I would be able to get out of my bed and get to the bathroom without all the serious, horrendous, stiff, and chronic pain I have had for many years. I never expected perfect, I don’t now, but I do know improvement and I have improved. I almost want to cross my fingers while typing this so I don’t “Jinx” myself, I’m sure all of you can relate to what I am talking about.

I will always have good days and bad days, that is a realization I have accepted. I have taken, in the past, probably about thirty different medications in different combinations and this is the fourth Rheumatologist I have seen (and will continue to see.) While your Doctor does NOT have to be your best friend, you should feel that he/she believes in you AND in Fibromyalgia as a chronic pain disease. That’s very important. The Rheumatologist I went to before this called Fibromyalgia a “lazy diagnosis” and attempted to treat my pain with dangerous immunosuppresant drugs that made me sick as a dog for months at a time. He did this because combined with Fibromyalgia, I also have an auto-immune disease called Hashimoto’s Thyroiditis. I didn’t know better so I followed his advice and took seriously harmful drugs at a dosage that should never have been prescribed. This old Doctor was a genius, but not in Fibromyalgia and not in being pleasant and understanding. As my present Doctor put it referring to my old doctor “it’s his way or the highway.” Don’t accept that.

I am now on a combination of drugs that not only treat my symptoms but also have treated my energy levels. I am NOT running any marathons, believe me and I have flare-ups that still can make me cry, but overall, at least on some days I am better. Please, do not give up hope, do whatever you have to do to find a good Rheumatologist and only a Rhematologist that believes in you and the disease. One where you feel that he/she really wants you to get better and that they truly do care. Don’t settle for less.

We all deserve better and I just wanted to say to all my on-line friends (Hi Graceful Agony Ladies, Chronic Babes, ohmyachesandpains, etc.) please don’t give up and thank you for always being there for me; I love you all.  To friends that are new or newly diagnosed I NEVER  thought I would feel any better and now I do. How long will it last? I have no idea. I have accepted my limitations, I accept that I will have bad days as well as good but I can say for sure, that compared to how I felt five years ago, I am better. My attitude is better too.

If anyone is interested in which drugs work for ME, I would be happy to tell you. Don’t give up, I almost did. If you are new to this and don’t know how you are feeling or if you are feeling mad and angry and sorry for yourself; go ahead, you deserve it. Been there, done that and try to stay in the present, not the past or the future. As my dad used to say to me “Be in Neutral.” It’s a life lesson from my dad that has stayed with me, try it, it might help you too.

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 Stranger

Image by MasterTaker via Flickr

My head is throbbing, my cheeks hurt from congestion, my legs feel like tree trunks. I want to get showered and dressed and hop into the car except I don’t hop anymore nor do I skip. In the best of times it’s hard to even walk, to get up from a seated position, to lower myself from standing to sitting in the car. I’ve been robbed. I have been robbed of my physical, mental and my emotional health by some unknown force like the robber fly as he takes his victim.

In addition to Fibromyalgia and an auto-immune disease, Hashimoto’s Thyroiditis I now have a simple virus or mini-flu which in the best of times makes you feel poorly. But, a virus on top of my other two chronic illnesses makes you feel overwhelmed. I can usually handle the discomfort and pain but not now. Not this time. Is it a flu, a Fibromyalgia -up or a flu on a fibro flare? No one can even tell me what a flare up really feels like or what it does to my body. I don’t really need to know but it would be nice if I could once in a while differentiate my sources of pain. I can’t. I only know that I feel worse, that every step is agony and that I groan going up the steps and down, clutching the banister for support. What has happened to me and who have I become?

I don’t have the energy or the will to get showered, dressed and out the door. Everything I do seems to be an overwhelming task. I cannot remember what it felt like in the past to have such strength and motivation and joy to start a full day. If I can do one errand, get out of the house for one thing in particular, it’s a good day; I have achieved something major.

Fibromyalgia hurts my body, my mind and my feelings. Imagine having a disease that gives you extraordinary pain when half the world is smirking and rolling their eyes and the other half are nodding with tears streaming down their cheeks in empathy. The world, as always, is divided.

I both dread and look forward to my appointments with my Rheumatologist. Sometimes I feel that THIS time he will have the magic answers, most times I can comprehend that there are no miracle cures. I have this chronic illness that will not go away, ever. I am not the same person who used to walk with friends for 3 miles in 45 minutes, who was a size 8, who belonged to a gym with my friend Lisa, who was young and independent.

I was a different person years ago. I worked full-time and drove back and forth to work, made dinner, took care of my child, went to bed fairly late and woke up to the shrill noise of my alarm clock and my husband’s arm nudging me awake. Who was that girl, that young woman? Why did you have to keep her held hostage forever? Why not even a reprieve now and then?

I sit, I wait, I lie down, I avoid the ice, the freezing rain, any chances to fall and break another bone. I lie back against three lumpy pillows and think about dinner or when I will feel able to pick up my prescriptions from the drugstore. I am not who I was yet I don’t recognize myself either.

Who am I? I am lost.