Black sky, shiny pearl
String of feelings, clouds, storms move
Shifting energy.
Français : Lune (Photo credit: Wikipedia)
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Flying, sky pink air
happily through marshmallows
The joy of wonder.
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A new world of stress
sky lights up flames thrash
The force of nature.
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Be at One.
Breathe in goodness, exhale worry.
Take your time, Walk as much as you can.
Treasure the details, a flower, a bird, a snowflake, a child’s smile.
Believe in whatever God or Spirit, Nature or Person you Love;
it is not for us to judge but to be compassionate and open-minded.
Keep good thoughts in your heart and soul.
Loving kindness to other people. It, karma, will come around.
Never be defined by others, especially those who smile to your face and turn around to stab you.
Move away from mean people.
Liars are everyone’s enemies.
Have the courage of your convictions, hold on tight to your values, your beliefs.
Try not to be influenced by outside people and know that all of us make mistakes.
Forgive yourself and others equally.
I need to listen directly inside myself, to follow my voice within, for every decision.
Stop, listen to your Heart, your Soul, Nature, Intuition.
Be gracious and patient, control your temper, monitor your mood.
Be compassionate and giving and even when you feel you have nothing to give, keep giving.
Everybody has a story
Let your heart be open to give and to receive.
Offer only what you have,
Honesty in its purest form.
Love.
Physical and Emotional Energy
Energy, or lack thereof, is one of the main complaints of all the varied yet connected physical illnesses I have. I honestly don’t remember what energy feels like anymore, except for the brief time when I was on Prednisone. I felt half my age and filled with methamphetamines. The world looked bright, I appreciated every second of being in that world, I felt grandiose, I was so happy to have this reprieve to what I perceived as “back to normal.”
When I had to taper down slowly I understood that this was not a drug to take for a long time. But, I distinctly remember when the drug disappeared from my body. Similar to the colorful, glorious leaves in Autumn slipping slowing to the ground until none were left… .. I looked up and saw only dry, miserable lonely branches. I remember specifically the day that the medicine left my body completely, I put my head in my arms and sobbed. There was an old movie called “Cocoon,” where elderly people were given the gift of youth for a short time, their bodies replenished, their illnesses healed, their faces back to their youthful selves. They seemed so happy until the potion wore off.
Of course the potion wore off, doesn’t it always? Aging is inevitable, loss of hearing, sight, lack of energy. I have been without that energy, that youthful quality for over seven years now but not just from aging gracefully, I could handle that. I am lying in bed with my back twisted, the heating pad behind me, feeling quite sorry for myself for actually being disappointed that I had to cancel a dentist appointment because of back pain. If that’s not pathetic, what is? It was a place to go, to get out of bed, leave the house and drive, to talk to new people, nice people, unknown people.Who understands this except other people with these disorders?
I blame my Thyroid (Hashimoto’s Thyroiditis) and Fibromyalgia for my lack of energy yet I blame the nasty, hateful people around me for draining me, for stripping me of happy energy for my soul. They are not to blame, however, I blame myself for allowing them to do that. I control me. This is my responsibility, not their responsibility. Let them rip each other apart if they want to, I don’t have to be involved with it anymore. That is my choice.
I will control whatever energy I have left. Physically and Spiritually.
LAF Photography
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.
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.
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.
Image by Lel4nd via Flickr
Oh sure, we are always supposed to give our thanks for what we have and do gratitude journals and write down five things every day we enjoy. No. I won’t do it today. I’m mad and cranky and I’ve had my fill of just about everybody except my dog (and my husband). My two teenagers, (that speaks volumes in itself) 16 1/2 and 18, have been making fun of me and teasing me non-stop. At least that’s what it feels like. We were sitting around the kitchen table and my daughter told my son something”stupid” I said and my son joined in with another mistake I made and proceeded to “text” dad with something I got mixed up with, Texas, Tennessee, whatever. What I felt like doing was having a nutty, exploding and screaming things like “Shut up, you ungrateful brats I’ve had enough” but I didn’t; I regret that now.
I feel like “Mommy Rae” and want to stand up on the kitchen table with a sign that says there should be “A Union For All Moms.” I did tell my children that they were taking advantage of me and I was sick and tired of it. I was ready to cry, explode or yell (which would not have been a bad thing) but instead I left the kitchen table abruptly so they could probably make fun of my lack of sense of humor or whatever else they were dissing me for. (note to people who don’t have teens: to diss: to make fun of or put down.) I escaped, stomped up the stairs and stayed in my bedroom and watched a DVR’d version of one of my favorite shows, Top Chef. I did not go down to “make dinner”early because I had my limit of “what do you want, and what do YOU want” since my daughter is a vegetarian and my son thinks good food consists of ring jells and mixed fruit cocktail in jello. I kid you not.
I napped my intense anger away and when my husband came home and I thought that he was the only one on my side and that’s what it felt like. When he gave me a big hug, I didn’t want him to go. To Buffalo. (no offense to those who live in Buffalo) On Sunday. For six weeks. I thought to myself “how am I going to live with these two monster teenagers alone?” I still don’t have the answer but I am going to lay down the law and tell them to step up and help out. The fact that I have a chronic pain disease does really not seem to affect them, hey, they are feeling good, isn’t everybody? NO, chronic pain means pain ALL THE TIME, I have the amount of energy as a dead tick does. I’m tired, I feel like crap. LISTEN TO ME!
I refuse to pick my daughter up late at night for the next six weeks because I fade at 3pm not to mention 12 midnight. She will have to make plans, get it together. Help out. Think of me. (I scoff). Teenagers, by design, do not think of anyone but themselves. My son will have to man up and help out with things too, he can pick up his sister late at night and take part in whatever is needed for the family. The what? The family, you know, the one that is supposed to be a joint unit, each of us helping each other. (I scoff again).
I’m doing the best I can, that’s what parents do. They try and try and hope that they make the right decision because they only want the best for their children. Do children appreciate that? A resounding NO. I have said the old stand-by to them: “I can’t wait till YOU have teenagers.” Does it make a difference to them? Of course not!!! It just makes me feel a tiny bit better and that is better than nothing.
Image by stvno via Flickr
Tonight I am having a pity party for one; I am the guest of honor. You are welcome to join me but motivational speeches and happy clichés are not allowed. I’ve learned that the sun will probably not come out tomorrow, it will be cold, dark and windy just like the last few weeks. Some of my friends with chronic illnesses seem to be feeling the same way: Is it the weather? Seasonal Affective Disorder? Pain and unhappiness? Other friends that don’t have chronic illnesses are also fed up and feeling down. I’m wallowing in self-pity and I am allowing myself to do so. Wallowing and venting are the main attractions in my self-imposed symposium.
1) Both my husband and I have been very discouraged because of the job market; he has been unemployed for a long time. He is always the best candidate, the one they love, the one they want. We get excited, euphoric even, and then the final news hits us like a tsunami: “We would love to have him but there is no funding approved for this job now” or “There’s a hiring freeze that just started.” We plummet, like rapidly deflating black balloons.
2) I need to protect myself from future painful disappointments. While, in the past, I have tried to feel positive and hopeful, I am now keeping my defenses up because it is too damn painful to feel excited and then let down over and over again.I am tired of feeling bad and blue and not having anything to look forward to. Yes, I have tried to be positive, I count my blessings and I list the things that I am grateful for: nothing works. A good friend of mine told me she was depressed last week and I asked her “why?” “Because I am” she said. I now understand that completely.
4) Physically, I have no energy. I’ve been over-eating and sleeping way too much these past two weeks. I’m trying to sleep straight through to May but the chances of that are pretty slim. I stopped taking the autoimmune drug that was helping my energy level because it made my legs ache continuously and I wanted to rid myself of extra pain. This is what happens when I try to rid myself of drugs and toxins in my body. I end up asleep. I made the wrong decision.
5) The holiday season is not joyful for me. After my father died, the holiday spirit died with him. We go through the motions for the children. I’ve accepted this but each year after his birthday in November things start to go downhill fast, straight through to New Year’s Eve, the night he passed away. Why can’t I prepare myself? Why is it only familiar when it is happening again? Think of it as a long, a really long extended period of situational depression.
6) I’m having a default Thanksgiving in my house this year. My mom broke her wrist and I just couldn’t let her have it in her house. She is also depressed because of her broken bone and pain and having to be dependent on others, this affects me too. I feel bad for her. I can’t begin to talk about my self-involved sister, there is too much to say and at the same time, nothing to say. Thanksgiving is in one week, I have nothing prepared and I am both overwhelmed and underwhelmed. I will rally for the holidays because I have to; it’s a necessity not a choice.
Let me tell you directly what I want: Accept how I feel and allow me to have the emotions I do have. Don’t analyze, debate or criticize me. Try active listening. Help out during Thanksgiving and be kind to one another. I would truly be grateful if you could do just that.
Image by Jinx! via Flickr
I have been feeling extremely discouraged and blue; I’m back to square one, for the sixth time, in my search for a successful treatment for both my Fibromyalgia and auto-immune disease, Hashimoto’s Thyroiditis. It’s been over 4 years since my initial diagnoses and I have been given drug, after drug, after drug. I start a new medicine, each time, with hope and innocence and excitement like a flirtation with a possible new love. Two months go by and then I find out that it was, again, just a fantasy. Side effects are my enemy, I generally am the person that fits in the “possible and infrequent side effects.” Another dream deflected, another dream deferred. Back to the drawing board, again; I eliminate the medicine and so too my hope.
I’m drowning my sorrow in leftover Halloween candy and cookies: Almond Joy bars, Kit Kat bars, Nestle Crunch, Heath bars, Reese’s peanut butter cups, Twix bars, Keebler chips deluxe cookies and pretty rainbow cookies filled with marzipan and jam. For my anxiety attacks that wake me up at 3:00 am and keep me up until 6:00 I occasionally take Xanax, one prescription drug that I trust.
Yesterday, I started Savella for my Fibromyalgia and decided to stop using Arava (an immuno-suppressant drug). True, Arava kept my energy up but my legs ached continuously, like someone was squeezing them into a vice and wouldn’t let go. I don’t want to be on as many drugs anymore. I want to simplify my life, my body. It’s always a long stretch between taking the new medication ( 6-8 weeks) to kick in and likewise for the drug to leave my body. My husband kept mentioning how the Arava gave me energy and he was right but at what cost? It was only the other day that it occurred to me that I don’t have to live with the side effect of leg pain if I don’t want to. I’ve been on this drug for months and the thought just occurred to me. I have a choice but with that comes the acknowledgment of failure. Am I so used to pain that I feel it’s acceptable, even normal, to have some?
I’m alone in my search because no one really knows how I feel except me and even I get confused, my symptoms blur together. It’s hard for me to describe pain that is not throbbing, jabbing; how does one explain “constant?” I go by hunches and I try to listen to my inner self. My body is telling me now to get rid of the different chemicals and if I have to, start again, reevaluate in the future. For now, I will try to nurse my defeat with sleep, and when awake, look bravely at the sun in the sky while it lasts. I dread winter; I always dread winter. My bones feel frosty and taut, my body aches with pain and my mood becomes as dark as the early sunset.
*These Days by Jackson Browne
Well I’ve been out walking
I don’t do that much talking these days, these days
These days I seem to think a lot
About the things that I forgot to do
And all the times I had the chance to
And I had a lover
It’s so hard to risk another of these days, these days
Now if I seem to be afraid
To live the life that I have made in song
Well it’s just that I’ve been losing for so long
Well I’ll keep on moving, moving on
Things are bound to be improving these days, one of these days
These days I sit on corner stones
And count the time in quarter tones to ten, my friend
Don’t confront me with my failures, I had not forgotten them
Image by DianthusMoon via Flickr
This is the last phase of being on the drug Prednisone. I am in the final phase taking 10 mg for three days and then I’m done. The amount of energy I had the first few days is gone. I am no longer cooking up batches of baked ziti nor am I running around the kitchen like a commercial for robotic, easy, fast, cleaning. I am not darting around but still have the quick heartbeat and a little of the energy left; but not much.
Unfortunately, my brain and my body are on different speeds. I don’t like the feeling of my brain running on overload and my body beginning to lag behind. I am more uptight and it’s harder to relax; it’s also harder to sleep fitfully. I have nightmares every night and I don’t know if there is a connection but my sleep is definitely not deep and not peaceful. My muscle aches and pains were definitely better in the beginning with the large dose of Prednisone but it is hard to differentiate if it is because of the medicine or because I was speeding so much I just didn’t notice it!
The Prednisone, is slowly melting away from my body, like the body of the bad witch in the Wizard of Oz when water was thrown at her (I’m melting…..) I hope that in a few days my body and mind will be more in sync. Now, I just want to get the drug out of my system and go back to whatever “normal” is for me and that is something that changes day-to-day.
I’m coming down from the rush and speed of Prednisone, a very powerful and intense drug. I was glad for the fake recharging of my batteries but now I am just waiting for it to leave my body, little by little and take with it the fastened heartbeat, like an injured bird that is attacking my chest. It’s time to slow down, naturally.
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