Dear Body,

I know you have been trying to listen to me and I appreciate the effort but now, finally I think you have seen the light, pardon the pun. You have known what to do all along but with your being stubborn (and not letting your sister be right) you have negated every suggestion from everyone else. That’s not bad, you need to listen to yourself.

At the same time, I am proud of you, so very proud that you have decided NOW to,( on your own ), to do something entirely different. You went into a bad slump for a day and a half the “I can’t do this anymore” cry


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but you realized you really don’t have to give up. What a mood elevator that was!

Suddenly and slowly like each ray of a sunshine blooming like a petal you decided to do completely different. Instead of adding another med, you were going to stop them all. Yup, each and every one except for Synthroid which is medically warranted for your health. The others, well, you’re not stupid, you won’t go cold turkey, but you can talk (if you want) with each medical doctor and believe me there are way too many and discuss getting off the meds with ease. You are not asking IF you can do it but HOW. Hear that Doc? I am not asking your permission, this is my body and I’m taking it back.

You’ve had it in your germ-filled hands for exactly seven minutes each time. SEVEN MINUTES !!! I have (barely) seen you. My body, outside and inside deserves more than seven minutes. I need love, I need  respect and I deserve it. I know my body much better than you do. My instincts have never steered me wrong. Never. Can you say the same, that you have never given me the wrong diagnosis or the incorrect prescription. I thought not.

The other thing I will do and believe this is harder for me than the above is try to eat healthier foods and that means less processed foods. I can’t promise to throw my Kraft American Cheese Slices, individually wrapped, away, just yet, but I will only eat them when all other comfort foods are exhausted. I do make a mean chicken soup, all natural.

But, again, I’m not going to make myself feel bad if I go slowly in my process. And, I refuse to make quinoa on principle, kale too just because they are “popular.” I’ll wait six months to see what the new food trend is.

I’m not saying I wouldn’t order it for lunch at a cute local farm- to- land sweet restaurant my friend Sarah and I go to but I’m going to take just one step at a time.


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There you have it, my intentions, to be healthier, naturally and stop throwing back these ridiculous pills the doctors have given me because that’s what they do. Maybe I’ll send this to Michael Finkelstein at the Sunraven Center and we will go full circle. Meditation instead of medication. (Love that !) At least when Danny finds a job or if he has a sliding scale. It’s worth a shot. ANYTHING is worth a shot. Be Grateful, Be Kind even more than you have been. Heal Yourself. The time is now.

Love,

Soul

ps: Dedicated to my new friend, Ken

Cookies? Check. Ice Cream? Check. Impulse Items? Check.

WELCOME HOME

 

I haven’t had the energy to go grocery shopping (something I hold near and dear to my heart) since early Spring. I’ve had all my illnesses flare up at the same time: Fibromyalgia, Hashimoto’s Thyroiditis, Syncopy, Fainting and Crashing, No Energy etc. For me? A tragic loss. For the supermarket? A major deficit. I’m not joking (as most of my readers will tell you) I LOVE FOOD, good food, strange food, NEW food and products. I will always look at every item on the shelves to see if I can spot any new items. I always can and I always buy them. I have no idea what the photo below is showing but that is a product I would definitely buy and eat, wouldn’t you?

Fastelavnsboller (Photo credit: Wikipedia)

 

 

 

 

 

 

My husband came along for this trip just to see if I could physically make it but once we were in the store I shot out with my carriage grinning wickedly. I don’t need a list nor do I want one. This is my home. I look at every item in every aisle and I know what I need, want or have to have for that week.

I knew it was a mistake NOT to go into marketing after I graduated college. I am the one to pick out the next new product, the new sensation, the new flavor, I’m a marketer’s taste test dream. Is it too late? I am at my prime, have your people twitter my people.

My mom says I have been like this since I’ve been five years old. I haven’t outgrown it and am proud to say my children, have inherited this hobby too. Even now, in their twenties, they love to go shopping with their mom.

For a while when I was younger (no, I’m not kidding) my then boyfriend, now husband, watched a show called Supermarket Sweep. We watched the original show every single night when it first came on. We toyed with the idea of getting married in a supermarket but somehow never went through with it; I regret that.

Stew Leonard’s is a great place to shop and fun too. I bet they would help if we could talk my (un) romantic husband into the idea. Right near the mooing cow! Don’t get me too excited, please.

Stew Leonard’s (Photo credit: JeepersMedia)

Anyway, I bought: (New Product) lemon ice cream with mashed lemon cookies inside,huge, soft oatmeal raisin cookies (new brand) some new kind of skinny-ish popcorn for when you need something slightly salty but not fatty while you are watching a movie at home.

 

Also, I am now taking a new medication for my fainting spells, the fancy name is Syncopy also: Fibromyalgia, Hashimoto’s Thyroiditis, Narrow Angled Glaucoma, Eppiglottitis, IBS,  and others. I now have to have breakfast. I bought apple, blueberry and strawberry breakfast bars. This is the first time in all my life that I have eaten breakfast, my mom will be so pleased.

Usually, it’s just that steaming cup of coffee in my white Starbucks mug with half and half and one sweetener. I look forward to the smell and the first sip every single morning.

After that, I just go on with the boring details of my day. If I don’t feel the need to nap, I feel it is a personal triumph. Then our dinner conversation begins around 4pm. What shall we cook?  It doesn’t really matter, last night we had hot dogs, baked beans, and broccoli, the night before pizza but they are all precursors to the most important part of any meal: dessert. The lemon ice cream dessert:

I dipped my spoon, my little spoon, into that new lemon ice cream, slowly, tasted a small bite, let it linger on my tongue and swallowed slowly, making sure I had a cookie bite with the ice cream. I was hoping for a dance sensation in my mouth or as my husband and I used to say “I hope it dances.” Did it? Oh yes. After half a cup of delicious lemon ice cream with bits of lemon cookies, I have found a new love. It’s so nice to be in love again, I feel tingly all over.

 

Is Begging From Strangers On The Internet Now “In?”

The first time I saw an ad over the internet for a couple asking for money from complete strangers, all over the world, I thought it was a joke. I literally thought it was a spoof but it wasn’t April Fool’s Day so I didn’t understand it. Until I saw another ad asking people for money to pay their expenses to cover their credit card minimum. I’ve seen actual ads for couples asking people to donate for their fertility treatments, for their sick dogs and cats and yes, one for an ailing bird.

My husband was laid off from his job10 months ago. He started looking Day 1 and hasn’t stopped. I am not able to work full-time due to physical limitations (numerous health conditions including Fibromyalgia, Kidney Disease, auto-immune disease, Hashimoto Thyroiditis, Syncope and Hypotension ) but even I am looking for part-time. We are not eligible for unemployment money. It never crossed my mind to put an ad on Facebook or anywhere on the internet to beg for money. Call me old-fashioned. When did this become a socially accepted use of media? Or, a personal standard?

I’m not judging (okay, I’m TRYING not to judge) but this is all so new for old-fashioned me. Is this the younger generation’s idea of problem solving? I sincerely hope not. So, believe me this blog post is NOT about asking for money. I would not do that. But, I am asking for a favor and while I don’t have high hopes I consider this networking because my husband gave me permission to put his résumé on my blog.

He does not want a hand out. We would not accept money to pay our bills. We would rather move (which we are talking about) anywhere he can find a job. Do I want to move? Not really. I have an elderly mother here and my sister, both twenty miles away from me, I’m in the middle. Our children go to SUNY schools.

Half Empty Or Half Full? (Photo credit: MarkyBon)

I am not asking for pity but a connection would be lovely. The following link is my husband’s resume, please read it and pass it along if you know anybody. Anybody who is somebody is even better!

Click to access dfriedmann.pdf

If you can find it in your heart to take a minute to read his résumé, we would greatly appreciate it. I’m not too proud to network for my family, that’s what families do, we stick together. We are trying to stay positive, truly. Today was rough, maybe tomorrow will be better.

Thank you for reading my blog and for any help you can give us.

 

 

 

 

 

 

 

An Open Letter To Ellen Degeneres

English: Ellen DeGeneres in 2009. (Photo credit: Wikipedia)

Dear Ellen, I hope you don’t mind me addressing this to you, I just need someone to listen, someone who cares about other people. I thought you were the right person even though I’m sure you will NEVER see it. That’s okay. With the exception of a few best friends I’ve learned the hard way that other people are too busy in their own lives to care.

I DON’T WANT ANYTHING FROM YOU.

I guess I’m trying to think and talk out loud here. I’m lost, and have no idea what happened to me, I have no idea who I am either though I used to know so clearly.

Have I just become a mountain of symptoms trying to blend themselves together in a jig saw puzzle where no piece fits? I’ve made changes, I stay away from negative people, I try to be as kind as possible and pay it forward when I can but still trouble follows me like a black cloud.

Believe me, I am NOT asking for pity. I don’t want anyone’s pity, if I want pity I give it to myself, underneath my three layers of blankets, with the door shut tight, my dog lying next to me on my bed. I don’t want pep talks either, encouraging me that it “is just a phase.” This phase is my life and I have accepted it, I just don’t understand it.  When I try to fight against the “down” period, people tell me not to do that and to be positive. Everything is a mixed message.

You have the natural talent to bring joy to others just by being yourself, I love that.

Right now, I am a huge collection of symptoms that I don’t mind sharing, I’m 57, there are people who are 97 that are healthier than I am. From head to toe: narrow angled glaucoma (eyes) many, MANY painful treatments in my eyes to try to correct that, but its a life long condition, hearing loss (had stapedectomy-operation for ears) the dreaded Eppiglottitis, I don’t wish on my worst enemy, I shiver at the thought, (open, gaping wounds below the throat,) horrific TMJ, shooting pains from my jaw/ear to my brain causing me to scream with agony caused by any random thing and some other facial myalgia the doctors threw at me) which I don’t even count. I have IBS, Fibromyalgia, Fatigue, No energy, Chronic muscle and joint pain, Fibro Fog (not remembering something someone said a minute ago.) General Anxiety Disorder, Hashimoto’s Thyroiditis (an auto immune disease of the thyroid) foot pain, wait, the most recent one and most deadly,  Kidney Failure, Stage 3? (No one ever told me about Stage one or two) I think I’ll stop here.

Now for the social things, I can’t work because of the above illnesses, my husband was laid off for the second time and still is not working. We have two fabulous children who are attending two different state universities and a dog (our second) I rescued from a shelter.

I want you to know that we ARE thankful for our blessings, we truly are. Writing this down makes me realize that even more.Thank you for listening, sometimes it is good to write it down and look at it on paper.

But, am I jinxed? Is this what they call “going through a rough patch?” Whenever I feel I’ve reached bottom something else happens. Do you only know where the bottom is when you finally start climbing up slowly? Isn’t it possible to stay down here forever?

I guess I just have to accept what is going on now, breathe slowly in and out and believe that something good will happen. Someday.

Please don’t “like” this post. I don’t.

Support Thyroid Change, Please

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

A really important organization with lovely people.  Here is my published blog post.

http://www.thyroidchange.org/blog.html

http://www.thyroidchange.org/2/post/2014/02/you-call-them-curveballs.html

Just A Tiny Bit Of Cancer

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

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

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

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

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

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

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

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

I Already Said I’m Imbalanced So Shut Up

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

Even My Face Hurts

alone (Photo credit: dragonflaiii)

Not having a good thyroid-fibromyalgia-hashimoto’s thyroiditis day. That’s the thing with these stupid chronic, auto-immune, thyroid diseases, you can feel great one day and like crappy crackers the next. I knew it, I jinxed myself with that Pollyanna positive post a few days ago. I am aching all over, and for once, I even made an effort to go outside to do an errand instead of surrendering to my soft pink fleece blanket and baby blue down comforter that were inviting me to stay in bed. I’m back in there now, its night-time and I just pulled on my old mint green night-shirt, from Victoria’s Secret, (so huge and not sexy) that has snowflakes on it and I’m cranky. I posted a comment on a website before where other people were moaning and groaning about how they felt and I just joined in with them because sometimes you need a break. They understood how I was feeling and that is exactly what I wanted.

Did it cure my aches and pains? No. Did it make my sluggishness disappear? Of course not. Will it banish my throbbing headache? No. But, it gave me an outlet just like this, to vent because sometimes that’s all you have left. I am here with a spouse who is watching football downstairs and who does NOT HEAR me, our kids are in college drinking beer and cheap vodka, old friends have deserted us, and we are getting older by the minute.

I’m feeling lonely or alone, maybe both and the only things keeping me company now are the tears welling up in my eyes and my dog. I’m tired but I know, feeling this way, I couldn’t fall asleep and it’s too damn early anyway, it’s not even 9:00 PM. I’d be up cruising my little cottage at 2:00AM if I went to bed now. I’m just in a funk, maybe I’m having a pity party, that’s alright too. I don’t know and I don’t care. It will, most probably, only last a few hours so I will soothe myself with music, darn, I wish I liked wine but I hate it, beer too. I don’t want to go on a food binge, that got me into deep trouble the other night, it was not pretty. All I can say is: Baked Lays (sour cream and onion) Jarlsberg cheese and crackers, toast with butter and honey, a Ring Ding, canned pears in heavy syrup and that’s all after dinner. It was not a pretty sight.

No more eating, no more eyes tearing, still have a headache and my face feels like a sledgehammer has taken up residence in my brain. Things don’t stay the same, it will get better or it will get worse. I really don’t know which way it will go. 50/50 at best. Hey, we all have these days and nights, we have no choice. If we didn’t have the bad, I guess we wouldn’t appreciate the good, at least that’s what I’ve heard.

PAIN 11/11/11

I AM convinced that menopause was the catalyst for my getting a thyroid disorder, actually an auto-immune thyroid disorder called Hashimoto’s Thyroiditis and Fibromyalgia which crept in….no, more like, crashed into my body right after menopause and never left. It also changed me from a happy person to a somewhat content person. I am more anxious, I have more fear. If PMS was a wading pool, menopause for me, was like a tsunami.

I had been to doctor after doctor, half of them not having a clue what was wrong with me (including my beloved internist who walked out of the examining room in frustration and left me crying inside, alone.) There was a rheumatologist who said I had “scoliosis” and that my auto-immune disease of the thyroid would leave me “wide open for other auto-immune diseases.” Thanks, really helpful and informative not to mention it scared me half to death. I had another rheumatologist who put me on cymbalta and when it did not help said she could do no more and a maniac rheumatologist who put me on various, toxic medicines that are generally given ONLY to transplant patients so that they don’t reject a new organ. He also let me stay on one particularly noxious medicine that gave me gastrointestinal problems so badly I couldn’t leave my bathroom for a month. When I called him after a month and told him what was happening, he said just “give it another month.” A month later, weak and dehydrated I had an office appointment and he said “my bad, that was my mistake.” YOU THINK?

It’s hard to remember “Before” menopause since I am convinced that menopause and fibromyalgia both robbed me of my memory. What was I saying? Why did I come up here? What did I want to remember? Frankly, its terrifying. I can remember verbatim the words spoken in my husband’s and my first fight but what I did yesterday? Not easy at all. It also robbed me of all the energy I ever had, poured it out of my body with an invisible pump and threw it in a large body of water far away from here. It could be fueling the energy of a little known country for all that I know…..

I consider myself a sick woman now, not a healthy one. My Fibromyalgia flare-ups have been so long and pronounced it’s like they are my new constant. I don’t remember when I didn’t ache in agony. Movement of every kind makes me groan out loud. I’m not asking for sympathy or even help, I am hoping for understanding. Please, just remember, I HURT all the time, whether you believe in this chronic pain disease or not. It is my unhappy life, not yours; do not judge. I don’t complain to you, so please don’t offer suggestions. If I want your opinion, truly, I will ask for it. You have NO idea what I go through so don’t even think about saying “you know how I feel.” Trust me, you don’t.

Hope For Fibromyalgia-Medication (Follow-Up)

Image via Wikipedia

For those of you who asked what drug regimen I am on I am happy to answer. However, I AM NOT A DOCTOR just a Fibro patient who has been going through this for over five years. You should have a Doctor, a Rheumatologist for Fibromyalgia. I also have Hashimoto’s Thyroiditis and sometimes doctors just look at thyroid levels. My thyroid levels were fine but I was still having the intense pain, so I went for different opinions. Don’t just go to an Endocrinologist if your Thyroid levels are fine and you are still experiencing ongoing pain, lethargy etc. Sometimes diseases can be linked together.

At the moment I am on Savella (drug for FIBROMYALGIA) and Nuvigil (was once used for late-night workers for narcolepsy). I also use Alleve at times (2) twice a day if needed but I mostly use that because I have foot problems, however, it may help Fibro problems also, too soon to tell. I also take Synthroid for my thyroid.

One of my friends asked which drugs I have tried. The list is so long it’s on my husband’s computer but I will post this now so you won’t have to wait for the other meds.  A partial list included:

Cymbalta, Plaquannel, Methotrexate, Arava, and Tramadol.

Good luck, let me know what is working for you and what is not.