Haiku Heights-Green

A Thick Forest (Photo credit: Jon Person)

*Envy steals the soul

Gripping, stomach shooting, pain

Life lost in the past

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Forest, milky dew

Inhaling fir, musty leaves

Crisp apples of sun

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Ocean, sea of lights

Tumbling green, gray-blue colors

Looking for lace foam.

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*Dedicated To Tammy Spice, who once had a doctor that destroyed her life. I wish I could take the pain away from you. Please keep on fighting.

Tired, Tired, Tired

(106/365) Tired but can’t sleep (Photo credit: Sarah G…)

I can’t watch the news anymore; even when I just glance at the news on the computer, I know the world is a scary place, a terrible place.  The fear is in my stomach first, like raw clenching tentacles and the tightness inside me like an army of multi-colored stretched rubber bands.  I feel anxious, I see it reflected in my own eyes, fear, insecurity, doubt. Yes, the world is a bad place and many dreadful things happen. I also take other people’s pain and clutch it in my arms, like a hug surrounding a wounded child.

I can list a number of my most awful days in a second, like rapid-fire stock market trading but when I try to conjure up incredibly good days, I have to think, hard. The usual, marriage and childbirth come up, of course, but really, what was the last golden day I had that was out of the ordinary?  I stop to think. Tonight, I can’t come up with anything; my brain has been taken over by fear and pain.

I know I am too sensitive but it sticks with me like a second skin; sometimes I invent future nightmares. I know I shouldn’t do that and I try to stop myself  but there are times when I feel overwhelmed. It passes, I know, but while it happens, I forget.

My legs, from Fibromyalgia tonight are aching, painful, much more than usual. Fibromyalgia is eating up my world slowly but aggressively. New symptoms, tingling and numbness of my hands and feet, leg pain, imbalance, nerve pain too. It wasn’t supposed to get worse, that’s what the doctor told me, or did I dream that? I knew it wouldn’t get better and I accepted that easily but today is so much more painful than other days. I want the pain to end and drown in sleep. Tonight, I want to curl up and try to find a comfortable position and just lay here in the dark. I asked my husband to come upstairs to kiss me good-night, I haven’t done that in many years; his tender kiss on my forehead reassuring.

I don’t want conversation or to watch television, I don’t want to read a morbid book or even a funny book and I don’t want to listen to music which usually calms my soul. I just want to stay still in the dark and breathe evenly and not hurt. This pain is severe; I never take pain medication but tonight I may have to grope for a pill from an outdated prescription.  I don’t really want to take it, it’s a false reading of tortured limbs but tonight, but tonight I need a break.

A break from physical and emotional pain, let me lie here and fall asleep with my dog sleeping on my foot and my warm diet root beer by my side. Let me forget the worry and the fear and the pain. “I don’t want to fight,” I said, to my sister online; I don’t want to waste the little energy I have on our frequent disagreements. Fighting is not the answer and not the solution. This stress on me is unnecessary and I want it to end, there is no room in my life for painful interactions. Whatever it takes, I promise to try to do it because I want peace between us, even if sometimes, it is artificial.

Let me stay in my little corner tonight, huddled on one side and let me sleep, just let me sleep.

The Lost Souls

I can’t stand the pain anymore;  I just can’t take it another second. I am having a hard time accepting that this is my life. I am not coping well today; I am not coping at all. Another day of stomach pain and too much sleep, no energy and endless trips to the bathroom, not leaving my home. Is it my long-lost enemy IBS revisiting me? Is it the side effect of the Cellcept that I am taking for my auto-immune disease, Hashimoto’s Thyroiditis? I don’t know, I really don’t know. I could easily start crying now, I just don’t know if I could stop.

I don’t know what to do and I hate that feeling, I feel powerless. I have no energy to fight or to make any medical decisions, minute or radical. I don’t have the strength or state of mind to start going to doctors anymore, again. What if I do nothing? Stop the medications and live like that? I’m scared. The medicine is supposed to be making me feel better and in some ways it does, except for the horrible side effects. Unless it’s a virus….See? There’s no way of knowing and I feel helpless, truly helpless.

People try to be nice, “Hang in there!!!” they write or say with heartfelt warmth. No. I can’t. I just can’t do it anymore. I’ve been pushed beyond my limit and I don’t know if there is a way to pull me back on board without me kicking my legs, punching fists in the air. I refrain myself from starting to scream obscenities like an absolute crazy person. I take an orange pill for anxiety, I drink a cup of ginger tea from a yellow ceramic mug. I droop.

It is clear I can’t continue to live my life this way. I’ve seen more doctors than I would like to see in a lifetime. Friends and relatives  yell out well-meaning ideas: homeopathy, acupuncture, massage?  There’s a doctor in Massachusetts, in Israel, two towns away? Try gluten-free, try vitamins, go to Dr. Weill, to this woman we’ve heard about in Brazil, how about the Mayo clinic for a minimum of $50,000 dollars and no guarantee?

I don’t want to talk about this, I don’t even want to write about it anymore except for the other “friends” who have painful and annoying chronic illnesses like me. They understand, they are the only ones who understand what it is like to live hour by hour. It’s not life-threatening, true, so we don’t get much sympathy but we have no lives to speak of.  What about us? The lost souls that linger in our beds, hoping for a surge of energy, a sign of life?  We are not part of the statistics because really, who knows about us? Who cares?   We are not in hospitals or reporting ourselves to the CDC.  We are not checking in to one specialty hospital because they don’t exist. We have symptoms all over the map, we are not just one disease. There are many, many of us who are unhappy, who are fighting each and every day ; we feel sorry for each other, because only we can understand the struggle, the fight, the emotional and physical pain that live with us just about every, single day.

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The Methotrexate Blues

Oh me, oh my.  My poor, poor stomach. I am feeling sorry for myself and I don’t care.   I take the drug, methotrexate,  twice a week for Hashimoto’s Thyroiditis, an auto immune disease. I hate it. A few hours after I take it (with food, without food,  after food, after a lot of food) my stomach feels like it’s going to explode, and generally, it does. I get cramps, feel horrible, and look worse. I look pasty, have NO energy and have to stay in bed. And I sleep. A lot.  Is it worth it?  I really do not know. That is what I am grappling with today as I lie under my covers feeling cold and weak and on your one to ten stupid scale, Dr. Guru, I am a 2, and that’s rounding up.

Yesterday was one of the best days I’ve had in about 18 months. I had energy, I had spirit, I had faith. I went to the grocery store and happily shopped for an hour and a half. I walked, I strolled, I tilted my head to face the warm rays of the sun. I was so happy. So I napped for a couple of hours in the afternoon, I was fine with that!

In the early evening, my husband Dan and I went to my sister’s house for a cozy  dinner with her and her husband. She made tacos, with chicken, cheese, yellow rice, crisp lettuce, red beans…..and we all laughed and chatted amiably and I shared a Diet Coke with her. We sound exactly the same and we usually interrupt or laugh at the same second.  She told me that I “looked really good” and I was absolutely delighted. I felt good, I felt happy and now I am paying a price. A huge, unfair price.

Went to bed at midnight last night and woke up at 12:00pm this afternoon.  Took four of  those horrible tiny yellow pills, the “M” medication and from then on  felt like_ _ _ _. (Fill in the word of your choice). I couldn’t make it out of bed, except to use the bathroom, and I had no energy; believe it or not, I needed a nap during the afternoon.

I’m resentful and disgusted and depressed. I went from such a wonderful day to a pathetic day. I AM thankful for the one wonderful day I had, believe me, but at what cost?  If there was a pattern I could adjust to it but there is none. I don’t have an instruction booklet for my own body and my body has a life of its own.  The only change that could possibly  made in the future is that I inject, yes, you heard correctly, inject the drug directly into my thigh. Hopefully,  this avoids the stomach complications but I haven’t gotten a definitive answer from the Dr. on that.  I’m cranky and frustrated and  the next time I see an orange it will probably be to teach me how to inject myself.  Swell.