THE BEST EXPLANATION OF MY DISEASE EVER

2 Comments

LOVE LETTER TO NORMALS
 
by Claudia Marek

Here is my letter written to explain to family and friends what it’s like to have fibromyalgia. It won’t work miracles: it’s hard to understand our illness from the outside looking in.  But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own.  Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need.  The best time to do that is when you are not upset!

Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!)  If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn’t help over half the people who tried them.  No matter how happy the people in the pictures look, there’s still no miracle drug available.

There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying. 

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse.  Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back tosleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’lltoss and turn and not be able to sleep at all. Every little thing will keep me awake.  I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational.  I know I am, but I can’t help it when it’s happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It’s very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

Jokes on: Getting into Heaven

1 Comment

Originally posted on The Hunt FOR Truth:

.

The day finally arrives: Forrest Gump dies and goes to heaven. He is met at the Pearly Gates by St. Peter himself. The gates are closed however, as Forrest approaches the gatekeeper.St. Peter says, “Well Forrest, it’s certainly good to see you. We have heard a lot about you. I must inform you that the place is filling up fast, and we’ve been administering an entrance examination for everyone. The tests are fairly short, but you need to pass before you can get into Heaven.”

Forrest responds “It shore is good to be here St. Peter. I was looking forward to this. Nobody ever told me about any entrance exam. Sure hope the test ain’t too hard; life was a big enough test as it was.”

St. Peter goes on, “Yes, I know Forrest, but the test I have for you is only three questions.

1. What days…

View original 465 more words

TAMING EMOTIONS

4 Comments

Child loss plunges us into a new and different world that is so foreign to us. We now hear words like “rainbow baby”, “angelversary”, “new normal”, and “triggers.” The language for parents of child loss is different, and so is everything else. Life will never be the same without our child and yet we’re expected to live “normal” although what we’ve just experienced by child loss is far from normal. Children are never supposed to die before their parents. Every day we put on our “normal mask” as we face the world………and every night when we take off the mask we are exhausted. It’s so hard trying to “tame our emotions” while out in public! Why do we do it? Because people would think we’re crazy if we let our true emotions show! Very few people “get it” when it comes to how hard it is to lose a child! Living with a broken heart day in and day out is the hardest thing we’ll ever have to do!

Grief Speaks Out

2 Comments

Is there something you have done, or do that helps with your grief?

I was touched by what Connie wrote in response to someone who asked, “Will there come a time when I can look at a photograph and find the joy in it?” Connie shared: 
“Something that I found that helped me out a lot when a loved one died was to place a small candle in front of their picture… take some “quiet time” whenever you need to, light it, share your day with them, cry with them, laugh with them… whatever you need to do that that time. There’s something about a small flame flickering around the face of our loved ones that is quite soothing.”

(me) This was something I never thought of doing but I will. There are many little things that can be done. I have in the Notes at the top of the page some techniques I have found helpful for dealing with grief. I just put a picture of my husband getting ready in the morning (he is smiling and you can see him and his reflection in the bathroom mirror) in my own bathroom. When I look at it – it makes me smile. It took me a while to get used to having a picture where I see it without choosing to look. Oddly enough, it feels like company. I like to wear his shirts to bed and I have a cosy jacket I still wear all the time – for some reason it feels like a hug. For some people it is meditation or prayer. I like to go back in time in my imagination and remember what it feels like being held and talking about everything and nothing. I bring that sense of comfort with me back into the present. For some of the memories – a song – or other grief triggers – I have had to train my brain to think of them as they were at the time – with all the happiness in them – without the sadness and pain of his death. I have shared this before – we used to dance at home and my husband would sing, “As Time Goes By” in my ear. I heard that song and I literally mind wrestled with it – I said over and over (in my head -since I was in a restaurant): “Song – Go back into the happy place.” I would feel so lonely and sad – and say it again, “Darn song – stop making me sad…go back into the happy place.” Now it is the ring tone on my phone. I guess that’s what a lot of it has been for me…working with memory to have it be as it was. Also working with ways to have my husband’s life and his spirit even after death inspire me instead of simply being overwhelmed with grief. When the dark moments come I try to accept them but limit the time I spend with them. That’s me rambling on. With love. xo

SPRING WEATHER /DREAMING

1 Comment

High winds, slashing rain
trees bent in a bow to nature
tornado warnings abound

******************

Heavy sulphuric air
fear prevails as whistles blow
a preview to Hells Fury

*******************

Heat of day,  then cold winds rush
forming ice in Spring, as rain pours
Dancing flower pots and hanging baskets
sirens racing up and down the streets
Hear the beat like a mad drummer cymbals crashing
Hail from Hell!

Silent Grief – Child Loss Support~Extreme Emotions

Leave a comment

 

Parents must learn how to deal with two extreme emotions when child loss occurs — the joyous celebration of their child’s birth, and the deep, penetrating sorrow of their child’s death. Every day following child loss is a tug of war between being so happy and thankful for our beautiful child, but so crushed in spirit now that our child is gone. And, we never know which emotion is going to win from hour to hour. Child loss is the most unpredictable of all griefs! One thing is for certain — our heart never stops weeping once child loss occurs — never!

MARYLAND CRAB CAKES

1 Comment

FOR ALL YOU CRAB CAKE LOVERS!! HERE YA GO!! YES!
MARYLAND CRAB CAKES:

INGREDIENTS:
1 large egg
2½ tablespoons mayonnaise (I like Hellman’s Real)
1½ teaspoons Dijon mustard (I like Maille brand)
1 teaspoon Worcestershire sauce
1 teaspoon Old Bay seasoning
¼ teaspoon salt
¼ cup finely diced celery (you’ll need one stalk)
2 tablespoons finely chopped fresh parsley
1 pound lump crab meat*
½ cup panko (I like the Whole Foods 365 brand for this recipe)
Canola oil

DIRECTIONS:
1. Line a baking sheet with aluminum foil.

2. Combine the egg, mayonnaise, Dijon mustard, Worcestershire, Old Bay, salt, celery, and parsley in a large bowl and mix well. Add the crab meat (be sure to check the meat for any hard and sharp cartilage) and panko; gently fold mixture together until just combined, being careful not to shred the crab meat. Shape into 6 crab cakes (about ½ cup each) and place on prepared baking sheet. Cover and refrigerate for at least 1 hour.

3. Preheat a large nonstick pan to medium heat and coat with canola oil. When oil is hot, place crab cakes in pan and cook until golden brown, about 3-5 minutes per side. Be careful as oil may splatter. Serve immediately with tartar sauce or a squeeze of lemon.

Quick Tartar Sauce

Ingredients:
1 cup mayonnaise
1½ tablespoons sweet pickle relish
1 teaspoon Dijon mustard
1 tablespoon minced red onion
1-2 tablespoons lemon juice, to taste
Salt and freshly ground black pepper, to taste

Directions:
Mix all ingredients together in a small bowl. Cover and chill until ready to serve.