Wednesday, April 03, 2013

Remember me?

I've been away for so long, you all probably don't remember who I am. If you do have a fragment or sliver of a memory of me,  then I will have to tell you that I am not the person you all know anymore. Changing has not been what I wanted, it has been completely out of my control. I don't look the same, I don't think the same way, and I surely don't FEEL like I used to. I have turned into a person I don't know, feeling things that are totally new, wondering where the person I used to has gone.It's funny - I think most of us are often not impressed with the person they are, always wanting more... I know I didn't appreciate who I was, always thinking that I could do better, be better, certainly look better. I took so many things for granted...and we never know that until we have lost it.

The most upsetting (horrifying) thing for me has been the physical changes. The parts the whole world can see. I know that this sounds really superficial, but really it isn't. Most of us define who we are by what we do, how we look, and the feelings that we have for ourselves and for others. Well now physically for me --- I look awful. Seriously. I see someone else in my mirror, actually asking the one staring back at me to bring back the old version. I tell him ( my mirror is a man) that I can't continue this physical downward spiral... he never reply's but sometimes I wonder if he laughs at me. :)  Heaven knows I would laugh at me, too.

I am now good at doing nothing. There is nothing left to define myself by what I do, since I literally do nothing. If anyone counts reading, or staring into space a definitive career or even a quality, then I will be at the top of my game. I miss my job. I miss leaving each morning and being so happy to return at night.  I spent so many  years being irritated that I had to interact and talk to others. I have always been a loner, wanting to be left alone in so many situations. So now, I have my wish. I want to publicly state for the record that being alone blows. Yes, I have a husband, he leaves early each morning and returns late in the evenings.  I thank God for him each day. I feel sorry for anyone who has to deal with this new me on a regular basis.Yes, I have grown kids but the truth is, it's hard for me to even let them see me. I cannot avoid it all the time, and I know it's wrong to feel this way, but I am actually ashamed of myself and I don't want them to know that, either. I am well aware that none of the changes in me are my fault, and there is nothing I can do about it. That doesn't make it any better for me, certainly I would work hard to get back to the old me if there was even a tiny chance. I can barely walk, I limp and hobble and I am bent over to the left side, sometimes nearly in half. I have gained so many pounds, due to medications and lymphedema and pop tarts. Doctors tell me it's no big deal, it's not my fault, but those that know me well know that I'd rather be dead than fat. I don't even look normally fat, it's all in the middle, showing up there overnight. Literally. You've no idea what it's like to go to bed a small, normal size and wake up looking seven and half months pregnant.

Surgeries are in my future. My spine has moved (?) three inches to the right, which is impossible,and oh so painful, just ask any doctor. The only cure for that is extensive surgery. Screws and plates and cages are involved. I don't know when yet and I don't know how, but I do know that I am not going to walk bent to the left forever. No - spines don't move. Unless you have had a spinal stimulator put in your body with (leads) wrapped all around  your spinal column. That is my theory, not the doctors. But spines don't just move for no reason. You know I did all the research on this damned stimulator before I had it put in. I didn't want in the first place but my doc was sure it would help the pain. It did help for quite a while, until I developed lympedema, and then I couldn't take it, not when my left leg swelled up to the size of a hundred year oak tree. The doc did say that the leads were causing the swelling problem, people don't just develop lymphedema. Those that are fighting cancer can get it, but it is a secondary problem. I have it as a main problem. It causes giant swelling in my leg and abdomen. So there is the reason that I look like I am having a baby. Just for the record, I want to say this never happens. You don't just develop this problem. Of course, there is no cure. Just a series of compression garments and manual stimulation to release the water. No thank you. There is one certified physical therapist that can do that here, she is part of the cancer center downtown. I have resisted this treatment so far, it just sounds too far out to even imagine. Obviously, I went to the one remaining doc at my old pain clinic and we discussed having the stimulator removed. Makes sense, right? Sure he will take the little box in my lower hip out. But the leads --- the things causing my problems? No, they stay in forever. They wrap themselves all around the spinal cord and trying to take them out is way too risky. Dangerous, even. In all my research, no one ever once mentioned that. I asked about having it removed if it didn't work the way they said, they told me sure it can be taken out. But not the wires. They neglected to ever say that. And I was too stupid to ask.

Enough for now. I know this is awful to read, and I certainly understand if you can't make it through. I just wanted you all to know why I am not around. I am sad, I am sick and I am fed up.

I do think about all of you and plan to one day get back here like normal. I love and miss you, my friends.  :)


Golden To Silver Val said...

What a beautiful surprise to see you posting again!!! I'm happy to see it but sad about the contents. I will send you an email and we can talk about all this. I hope I have the right address; I've sent you several emails but have never received an answer. I could NEVER forget you, are one in a million and that Jamie is still there....that Jamie will always be there. I know you're disappointed and fed up and you have good reason to be, but we'll think of some ways to bring you out of it....ok? I've missed you so much! Big hugs and love.

Coffeypot said...

I have never hear of lympedema and had to look it up. You are having a rough time (to put it mildly) but I admire you for courage. Yes, you are brave. Many would have given up by now. But I say go for any treatment that will relieve your discomfort, no matter how far out it seems. You are in my prayers, too.

Josie Two Shoes said...

What you need to know is that we love you no matter what you look like or how you feel, or how inactive you may be. I am ALWAYS delighted just to see your blog name popping up in my reader. Isolation leads to depression. This was an incredibly honest post and it helped me to understand more not only what you are experiencing physically, but how it feels emotionally and mentally. Yes, huge changes to adjust to from the active little Jamie we once knew. But I also know that deep down you ARE still you, you still have control of your mind and a heart as big as gold, and I'm betting you still have that intuition that told you things like me meeting up with a guy named John... the one I am now married to I presume. :-)) I wish I had "happy words" to say to sugar coat the harsh reality of your life and make it better or preferably make it go away. I don't. But I do know that it helps to have people to interact with and I remember that close-knit group of blog buddies we once had. I would NOT be alive today if it wasn't for you and how much you cared, and how much of my whine you endured while telling me I would be ok. I hope you spend as much time as you are physically able, rejoining the blog world a bit. I'm doing the ABC's of things I'm grateful for this month, and I know you to be a woman of faith (hard as it is to understand what God has in mind for us sometimes), so I'm betting you could come up with one or two each day too, those adorable little boys for sure. When is the next grandbaby due? And the cuddly cats who I know are good companions and love having you home, and Spring is coming... slowly... and. That doesn't negate any of the bad stuff it just is to help you remember that there is still a few rays of sunshine peeking thru the clouds. I for one, would be perfectly happy to have you just stopping by each day to tell us you got thru yesterday and let us know what you are dealing with today, I know it's ups and downs, and scary medical monsters! I care about your journey and I want you to know you aren't really all alone up there. You are precious to my heart! I also want to assure you (as the daughter of a mother who was severely disabled in her last years) that your kids want and need to see you, they will learn to adjust to the changes, but to them you are still MOM, and that is all that matters. Please keep us updated, and I'll keep praying for you, I've never stopped and never will. Big hugs, and a bit of warm Texas sunshine being sent your way. XOXO, Josie (Sorry about writing a whole epistle in your comments, I can't help myself. :-)

Maria said...

Hi Jamie~yes, yes, yes to everything Josie said. It's always so good to see your name pop up. We think of you often & you're always in my prayers.
I'm so sorry for all that you are going through. As a chronic pain sufferer, though certainly not to the extent that you suffer, I always took solace in books. Reading got me through the worst of times.
There are no words to make you feel better. Just know that you are thought about & my best advice...DON'T ISOLATE. Everyone who loves you follows your lead. Even if it's just having someone sit with you, it so very important.
Take care, sweet Jamie.
Prayers go with you.

Jamie said...

Oh my friends , you make me cry. Such beautiful words from you....I thank you so very much. I can't find the words right now, just please know how much I appreciate each of you. Hugs. Big, big hugs. :)

Juli said...

Well, you can read blogs. Even if you can't comment, you can read. And that could be your outlet, for now. Until things are better. Because you have to believe that something will get better.

Believe it and it will happen. Honest. (((HUGS)))

SOUL said...

I get it. And i never forgot you. OX.

C.A. said...

I am thinking of you, my friend and sending healing prayers of peace for you. You are on my mind....

Gentle Hugs...


Leann said...

I don't think I could say anything better than what Josie did. Exactly what she said!!! Your kids need you, no matter what you look like or the mental changes you've gone through. You are and always will be Mom and Grandma.
Love you, think of you often, and pray for you always.
Blessed be sweetie.

Lena said...

We are all here for you! I am so sorry to hear that things have not turned around at all.

Josie has said it all so well and I agree with her all the way.

Please don't be so hard on yourself about questions you didn't ask. How could have you known??

Be gentle with yourself. It is not better to be dead than fat. Your family wants and needs you.

Hope you can post more and stay in touch.