I was younger than two years old and my baby self was in a crib, crying and upset. It’s almost as if I see the image as a third person, like a photo you want to take. I am upset and I hear soft footsteps coming. It was my dad who came, he reached over the crib and started rubbing my back. “Ah, Ah, baby, Ah Ah baby” he murmured, over and over again, until I was calm and safe and soothed.
When I spoke to my friend on-line I told her I was thinking of writing a blog with the title “Losing Hope.” I’ve learned to wait a little while and see how I feel later on. Granted, passion fruit sorbet and coconut sorbet helped a little. It was probably a combination of the sugar and the unique sorbet flavors that worked so well together.
The morning started with a phone call my husband made to a hiring manager. The good news? He is definitely the candidate that they want! The bad news? They don’t have the funding for the job. This is the second time this has happened to my husband. He’s been unemployed for a year now. (Anyone know of a Software Engineer job?) I see his sadness and as hard as I try to boost his spirits today I just sunk lower with him. I’ve been good and supportive but today was too much, so we acknowledged we were blue and then went out for an inexpensive Latin dinner (with a coupon) where he had tilapia (fish)with mole sauce and I had a quesadilla filled with spinach, mushrooms, cheese and horrors of all horrors, green peppers. After I finessed the green peppers to the side, I was happy.
We took our dog out for a short walk after dinner and as much as my joints hurt, and my knee locked, my fatigue overwhelming me, at least I did it. It was one of those perfect, beautiful, warm, dry evenings. It was also something my husband wanted to do and he does not ask for much. So, our 8-year-old mutt, Callie was in heaven, my husband was smiling and after giving myself a tiny push, I felt better too.
There were some “family” issues which bothered me but I got over it with helpful prompting from my husband as in “what do you expect? They always do that….” Enough said. My mother warned me about not eating too much food on the free cruise and the chubby girl resurfaced and I felt my body inflate and swell.
It’s hard to be sensitive, I can be very empathic but also hurt easily. It doesn’t seem to be a lesson I’ve learned or accepted. I try to “not care as much” but it’s a skill I lack and don’t think I will learn it anytime soon. At least I’ve learned to get over something quickly which in the past could have been long and drawn out.
I’m vulnerable, to diseases, to emotions, to temperature; we all are. After trying to fight the knowledge of a cranky, “snarky” day, I’ve learned (most of the time ) to just give in to it and ride the waves until everything calms down. You never know, maybe the next day will be filled with sunshine, honey and bright blue skies; it’s possible. Allow yourself to have a bad day or more when you need it and don’t feel guilty about it; we deserve it.
Sigh. Girls. I would take back teasing a young woman who was a dear friend at the time. I was jealous of her other girlfriend and I did not handle it kindly. I wasn't mean or spiteful, I didn't say anything bad but she was somewhat of an emotionally frail person and apparently couldn't handle teasing. I'm not justifying what I did, but I knew then, as I know now, it wasn't the right thing to do.
I am definitely a spiritual person and I do believe in G-d, in my own way. I don't go to church or synagogue but I believe that there are powers other than us mere mortals. I definitely believe that those who have died still love us and care for us and I know if you are open to receive messages, you will get them. My dad died 9 years ago and I have gotten very clear messages from him which I am grateful for. I am not scared of them, I welcome them and cherish them. I know that love never dies and it most certainly doesn't end when someone has passed.
1) I hate spam in my folder and if it reaches above 10 or 15 I HAVE to delete it. I won’t wait the month they promise to automatically delete it. I don’t trust them, plus I’m a little OCD.
2) Need to love my dinner on Sundays. An old family tradition dating back to when I was a child.
3) Still love and own (and may purchase more) stuffed animals or as I call them “friends.” And, I’m not embarrased about it.
4) I have been known to put either grape jelly or strawberry jam on pizza. Happily. It started with dry pizza in college, it has continued. Don’t judge, try it.
5) I am happy for 3 seasons of the year. Winter? Not so much.
6) I have NO sense of direction but can remember every word from a fight with my husband that happened 25 years ago. (My husband hates this.)
8) I don’t care about my age but I always care about my birthday. I used to think it should be a National Holiday…..and why isn’t it?
9) If there was a fire and my family and dog were safe and I could pick one item to save it would be Nokey, my frail, old stuffed animal that my Dad bought me when I was two. Nokey (from not knowing how to say Monkey, will be 52 on my/our birthday) in October.
10) My favorite cake is a cake that is chocolate with layers of raspberry jam and chocolate cream. An Americanized version of the Austrian Sacher Torte.
11) My husband is an absolute sweetheart who makes me a cup of coffee every morning; he makes a mean gazpacho too.
12) I sometimes worry about things before they happen, called anticipatory anxiety.
13) I don’t get people who get “high” on exercising. Never has happened, never will. I guess I’d have to exercise more to find out. LOL. So not happening.
14) The cicadas singing their songs at night in the summer comforts me. I imagine them having conversations with each other as I try to fall asleep.
15) I used to throw up in the bushes before day camp every day when I was little. Did my parents think this was normal behavior?
16) Old friends are not “always” there. Some are, some aren’t. There is no guarantee. New friends are a special gift.
17) Chris Rock changed the way I think about my hair. I had my natural brown color glaze to hide the fake highlights he said everyone in his audience had.
20) Did I mention how much I love jelly doughnuts?
Dear New Chronic Pain Member,
I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.
Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail on the wall called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.
For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.
This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here. My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.
Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother) Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.
I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others: TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.
I have no illusions that I will be “cured.” There is NO cure for my illnesses. I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.” “Get more exercise” says my mother. “Go to a nutritionist”says my sister. They mean well, they just don’t get it and how could they? We live in a different world.
The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower, purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.
I’m a book kind of girl. I read a lot of books, buy a lot of books, borrow and lend a lot of books. That’s why I always say to myself, once you’ve read the book, DO NOT see the movie. I say it, I mean it, I don’t listen to myself and I regret it. So, in my opinion the title of this movie should be “Eat, Pray, Don’t Love. That’s how I felt after seeing “Eat, Pray, Love” based on the book by Elizabeth Gilbert. WHY didn’t I listen to myself? Because I think I know myself better than I really do; and I am usually wrong. So, once again, I am saying visualize on your own, don’t see the movie afterwards, it ruins the images you have.
The movie started with Julia Roberts’ luminous face, all toothy grin and natural beauty. She’s a great actress but a little too showy, too pretty and shiny for this movie. Light softly silhouettes her face, there is beautiful scenery which of course showcases again the light of Julia’s pretty face. She’s beautiful even when she is supposed to be an emotional wreck. I wanted more authenticity instead of Julia Roberts playing Pretty Woman Now Middle-Aged. It was Julia Roberts on Julia Roberts, in just about every scene.
Another thing for us real women; if i had gone to Italy for a month of carbs and conversation I would have gained 30 lbs. and would have worn sweat pants instead of the teeny-tiny jeans she was wearing before and after in the film. If you are going to love your pizza, and your pasta, your wine, bread etc. keep it real. Most women don’t giggle lying down in a fitting room buying only the tiniest of jeans. Yes, we’ve all done the zipper trick at home, on our beds, alone, but most of us would show we have gained weight, which is how real life is. Embrace your body? Not with those size 0 or 2 or 4 jeans, not even close.
The other incredibly annoying thing about the movie, which I found totally inappropriate, was the sound track. As soon as I heard the first song, my mouth was wide open, aghast. I’m sure the songs themselves will be hits but they just didn’t belong to the movie. Did Elizabeth Gilbert hear those songs in her mind? Somehow, I doubt it.
Pretty woman, you’re still pretty, and beautiful but you’re amazingly privileged in the movie. I know a lot of people who go through marital troubles and they don’t get paid a nice salary for taking off time and traveling abroad. I understand the chaos you went through, I ‘m just not buying Julia Roberts feeling it.
Fight, I would tell myself. Fight for your right to be a family member and not the caretaker. "What about me?" I would shout, scream, cry hysterically. I would demand attention any way I could until they listened, until they understood and stepped in and stepped up. I would have made my mother act like a parent instead of folding like wilted flowers in a vase; you know that horrid smell of dead flowers that have overstayed their welcome; a smell, a memory that never goes away.
At the moment, I am avoiding depression like the plague. All fingers point to my being depressed but I am dodging bullets one by one, as fast as they come flying to me, I duck, I hide, I dart. I'm like one of those menacing bats as they come swooping; bats that I am terrified of and have a phobia about. If I keep avoiding depression I will be happy. I expect at the ripe old age of 53 to have some things go wrong in my life. Today I met a 21 year old woman who has been going through the same things I have been. That just doesn't seem fair to her. There's been illness, illness, illness and my husband's unemployment. There's been stress, anxiety and a feeling of despair. So, what I am avoiding is good.Trying to take things day by day. Am feeling blessed that I didn't know these feelings at 21 years old. I'm grateful that at 21 I wasn't plagued with these feelings, I want depression to bypass my young friend too. Yes, we are all in this together. People helping People; and so it goes.
In our modern day village of "Anatevka" we live in a very small house that is white, with black shutters and a red door. Our mailbox is also red and it makes me happy that we have it. All the houses in our neighborhood are small, so the neighborhood is reminiscent to (for those who remember this) Mayberry RFD. Children ride their bikes around the blocks (it's a circle) going from the upper circle part to the lower. We are the neighborhood, people from the maxi-mansions drop here on Halloween because it is safe. Moms push their baby carriages in the street, there are a lot of trees and people have luscious gardens with pretty flowers; there are also a lot of playful dogs. There is a tree with red berries that my daughter used to call "the red berry tree" and there's my favorite, a pussy willow tree. There's something so comforting about the feel of a pussy willow like the silky coat of a kitten.