Feel Good, Eat Cake

I just read a friend’s blog and while I have never met her in person, I worry about her. There is a definite bond for those of us who have some kind of chronic disease or illness. We feel for each other, and we really do care. I see myself sometimes in her writing,  stressed out, anxious and at times depressed. I have been there, done that.

Luckily now (even though I still have the same illnesses) I have taken the time to listen to my inner self (when it works). Sometimes it’s better than listening to many other people. Who knows you better than you? Also, apparently the medical world is trying (and succeeding) in making women go crazy. Let’s blame them. In light of this, take the newest controversy which has been a staple in womens lives for years: (and encouraged by all doctors)  calcium supplements.” You MUST take them”, my gynecologist says. “Definitely says my internist,” you HAVE to, it’s for good bone strength and preventing osteoporosis.” Oh, okay, absolutely. Now, just recently “we did a little research and the calcium supplements are now related to an increase in heart disease for women.” Huh?  I don’t understand how on earth we are supposed to know what to do, what to take. No one is making it easy for us, especially doctors. Ask a number of doctors one question, take your pick of the answers they give you. Why does this always seem to happen to women and not men? How come they don’t get conflicting and controversial views half as much as we do?

It’s all personal choice. Remember the saying “everything in moderation?” (if not, my dad used to say it all the time). I think that’s mostly true. Denying yourself certain things, certain foods will make you (okay, definitely me) crave them more. So, if you want dessert, order dessert. You don’t have to eat the whole thing. Ask the waiter or waitress to give you half and put the rest in a container to take it home if you want. As my friend Bruce always said “no ask, no get.” It’s really as simple as that and a motto I live by. (Thanks, Brucie)

We all have our individual preferences and rituals. For example: I make a mean banana bread (if I do so say so myself). I know that if I add raisins to the banana bread I could probably, with enough time, eat the whole thing. However, if I put raisins and chocolate chips in (the family favorite) I don’t eat much at all. Why? I don’t really like the addition of chocolate when I love anything raisin-like. It’s all a matter of trying to think things through first and that, I admit, is harder than it sounds and it  is an ongoing problem.

Let’s all try to worry less, walk a little more, take in a few minutes of sunshine and try to live life day by day. Not only “one step at a time” but one crawling, aching, stiff joints and baby step at a time. We’re all in this together.

We Laugh, We Cry

6/24/10

Last night, on instant chat, I talked with my friend P. for a long time. She and I are sisters in this crazy world of  chronic pain and difficult, unusual symptoms. The auto-immune disease that I call my own, Hashimoto’s Thyroiditis,  has its own set of innate problems, cells attacking cells. She has more physical pain and I wish I could take some away from her.

When we started talking, we were both subdued. We discussed our achy, ouchy  (I know that’s not a real word but it fits) symptoms. We were tired, tired of being tired, tired of being lethargic and uncomfortable. We talked about our day (some would consider this complaining but in our world it really isn’t). We were merely reporting and commenting on “the symptoms of the day” (you’ve heard undoubtedly about the ” soup of the day” well, this is different) and sleep deprivation, medications and diagnoses. We sound like we are pharmaceutical “reps” weighing in on different medications (we just don’t get paid for it and no free samples).

I got so frustrated at one point that I decided we were in desperate need of a new direction for our conversation. We decided on fantasies. (No, not that kind, get your minds out of the gutter!). We fantasized about a huge beach house (for me) and a very small one for her (so that when she cleaned it, it would be manageable. ) In MY fantasy, I don’t CLEAN my house, I just live luxuriously in it. I wanted neighbors, she did not; I kid her about being anti-social, she kids me back.

P. asked me questions about my ex-guru doctor and I updated her that the ex-guru doctor was still the guru doctor and I loved him (gee, had I not?) again, still, anew.  We’re a fickle bunch, we are.  She told me about natural remedies and I grumbled about how expensive they were and that I could barely leave the house to get the mail, much less drive to a costly massage or have a homeopath give me their remedies. (I’m sorry but I still have somewhat of a problem with the word” remedies”). We encouraged each other to plow forward, and she reminded me that “at least I had had one good day” which I was beginning to lose sight of in my quest for another.

We ended up laughing on both sides of two computers when I mentioned that perhaps we could have a “reality” show of all of us in the chronic pain/auto-immune/fibromyalgia/ CFIDS  and “other”categories.   I guess you had to be there but we took it so far that she was going to pitch my idea to producers. We LOL’d and ROFL’d so much that I had to help her up (virtually) from her  chair at home.  It was silly, it was ridiculous but it  felt so good to laugh and smile. In our world of chronic pain/illness  it’s an actual honor to be able to make one another laugh or put a smile on someone’s face.

I have been helped by so many kind people on this blog. But, I am the worst technical person in the world. It’s a wonder that I can even manage this simple blog (you’ll notice the elementary style with no photos or fancy techniques-sorry). If I were more technical, I too, would cut and paste and give awards (that are so special to me) to all my dear friends on this network (you know who you are!).

In my own way, I just wanted to tell everyone how thankful I am for the support, the humor, the  advice and encouragement and the friendships that have been made. We may have different symptoms but we have a common bond.   We take comfort in each other because only we can truly relate to one another. Doctors may sometimes not hear us, loved ones may not always understand us and we may feel a little crazy at times but, it’s our glue, our bond, that keeps us together.

Dedicated to all my blogger friends and to my friend P.

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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