Sorry for the major vent yesterday.

Wow. That was quite the post, huh? That is why when I am feeling at my worst I stay away from writing. ;)  But I did feel much better afterwards, hehehe. ;)

This morning I went to see Diana, my primary care nurse practitioner. And we had a long discussion. About my falling down twice in one day and breaking the fall with my forehead, about my knee surgeries, etc. And here is what we have decided. I am to resume the lymph edema treatment, but this time it is with the goal of easing the pain and swelling in my legs, and not the goal of the surgeries. We have agreed that the surgery will most likely kill me. And so, that goal for the knee replacements is over with. And in a way, I feel relieved as the idea of having such a major surgery after the fiasco last year just scared me to death.

 Diana said to me " Marlene, one of the things you will have to come to grips with is the fact that you are a beautiful, wonderful person, and you still have alot to offer to people. Your legs are not Marlene. They are a component of Marlene, but not all of you. And there is so much of you to offer to your friends and family and it doesn't matter if your legs work or not." She said alot more and I fought tears and couldn't even look at Greg, cause I knew I'd lose it for sure. I understand what she is saying. Really I do. But I still struggle every day with my growing list of limitations. It's really hard to swallow and she knows that I have fought hard and long with my circulation issues and the arthritis. Being in a wheelchair just doesn't make me happy. But it will help my pain level and keep me from falling and cracking my skull! So, I promised Diana I will work on that. What a wonderful friend she is.

As she walked Greg and I out, she told me her new office doesn't have any CHRISTmas decor for this year. The doc that left the practice took it all. (Last year for CHRISTmas I gave her and the other gals in the office one of my pine cone trees, so she knows I do floral stuff) So I said, that I can do! So in a few days when the pain from the falls has eased a bit, I will work on a few trees, garlands, and swags for the office. It will feel good to get designing again. And I know very well that she did that on purpose to get my mind off our conversation about the surgery.

And so my fibrofriends and fellow chronic babes, I say to you- your illness is not who you are either. It is a part of you, but not all of you. You too have lots to offer the world. We all need to work on that. Let's do it together, shall we?  Love and gentle hugs.   M

How do you cope???

This question goes out to all my fibrofriends and other chronic babes. How do you cope when people don't get it? How do you cope when people don't understand that lots of days your pain is so bad that just moving to pick something up makes you want to cry???? Or getting in and out of a car a few times when you are in a flare is enough to put you in bed for 2 or 3 days???  And how do you get people to understand that when you have to say no to going to see your grandson, or for dinner, or shopping, or a party, it's because you are in pain and haven't slept for nearly a week, and not because you are making excuses??? And when and if they have told you that you are making excuses to get out of doing things, how did you handle it?

I know it's not nice to wish illness on anyone, but there are alot of days when I wish sometimes people who act like this could walk in my shoes for a month or two. Perhaps then, they would understand how hard it is to say no. That we cry when we can't see family and friends when we are invited. That we would like nothing more than to spend time doing fun things like we used to. I've been told that I have changed over the years. That's what chronic illness does. It changes us. We no longer can jump in a car for a quick shopping trip or visit. We have to conserve energy so that we can make a meal, or take a shower or do the dishes. We have to say no when we want to say yes. We can't be all about our grown children or spouses or girlfriends anymore. We can no longer take care of everyone else anymore, because we have to take care of ourselves. It has to be all about ourselves when we are chronically ill. We have to make sure that what we do doesn't make us more sick than we already are. We have to walk away from the bullshit that drains every drop of joy from us. If we don't, it consumes us. And then comes the flare! I always think a flare cannot get worse than the current one, but they do. Sometimes the pain is so intense that my words get slurred and I can't think straight. Some days I am so weak that I can hardly carry a cup of coffee let alone hold on to a 20+ pound baby. The last time I did, it was so hard I stiffened my arms to hold him as I was afraid to loosen my grip-and that- only that-holding my grandson put me in a worse flare because of what I had to do to my muscles to hold him. And I cried for days because I am so weak, I am afraid to hold him. Again, I ask you, how do YOU cope.

How do you cope when the doctors give you a choice of knee surgeries or wheelchair, but you can't have the surgery because the cardiologist didn't clear you, and neither will the other doctor because the lymph-edema in your legs has reached new highs- or when they say you need spine surgery because of the scoliosis and the ruptured/torn disks, but you are scared to death, so you suffer with the back pain and sleep in the chair many nights? How do you cope knowing you need these procedures done, and then your hiatal hernia is now so bad that your esophagus isn't closing and stomach acid is burning your throat and mouth and now you need surgery for that too? How do you cope with not being able to do things around the house without the fear of falling down and injuring yourself again? (yesterday I fell twice. Once because of knee, once I passed out and hit my head on the table leg- Greg was home) How do you all cope when you have this much on your plate, and people don't get it?

I really need some advice here. Really. I know I am not alone, as I have read many articles on some of the forums I am members of. But I would like advice from my friends that know and understand what it's like to be chronically ill. Tell me how you cope with all of this. Or, even if you are not ill, but understand the ones that are.