Sunday, March 13, 2011

Kidnapped Myself...

In a way my body truly has taken itself hostage. It has pulled itself away from those who love me, and those who I love. I'm chained to the bed or the couch for the most part. Hidden away from the world, with infrequent cameos as proof of life to everyone. Yes, I'm still here, but I'm not the same person as before the "kidnapping". There is no ransom demand. My health issues want to see me holed-up and in misery for LIFE, and not a moment less.

So, how do I negotiate with an invading terrorist; when that terrorist is my immune system? Oh, go to the doctor? Sure, without insurance that's so easy! I'll get right on that! I don't want to hear the random suggestions anymore from those who have absolutely no idea what I'm going through.
"Drink a hot cup of tea and take a walk" - If a walk were all it took, I would've been cured last Spring when I was on painkillers and could still walk properly! But, apparently walking isn't going to cure my health. Thanks anyway.
"I heard about a couple amazing herbal supplements that would help with (xyz) problem" - First, I have about 26-35 bottles of supplements that I have tried on faith. My stomach doesn't like supplements at all because I don't have a gallbladder, and I've only had worse problems from attempting to listen to random research advice from people who are not licensed medical doctors. So, why don't you take those supplements and tell me how you feel after loading up with the suggested dosage on a daily basis for just a week? Yup, that is going to be somewhere between 30-60 tablets + per day. Have fun!! Enjoy the nausea and vomiting that it will cause you.
"Isn't there anything your doctor can do to help you out?" - Yes, there is...but I wouldn't know since I haven't been to a doctor since last June before my insurance lapsed after I lost my job. If I had a loaded savings account and didn't need insurance, I'd be at the doctor's in a heartbeat. Or are you offering to pay my doctor's visit and medications cost? Because that would effing rock!! Thank you. ;-)

This hasn't been the easiest week for me. Instead of getting better as Spring time neared, I've actually felt worse. More pain, more fatigue...but so much pain that I cannot sleep well or regularly. I'm so worn down physically, mentally and emotionally.


  1. You go girl!! Tell them how you feel! You know that I am here for you baby sissy! Wish you were not so far away... cause I would be there to take care of you...

  2. I'm glad to see you are writing as an outlet. It's cathartic, isn't it? I used to blog all the time, but when the news kept getting worse and worse, it was hard enough to acknowledge it, let alone put it in print. When itsin black and white it's real.

    You are strong and brave. And I know you don't feel it. But you are still alive right now, and that is a huge first step. You have things that you want to live for, and people you want to be around for. So you are fighting the good fight. Remember, you can't win every battle, but you can win the war. This is am war we are fighting Amanda. Our bodies are attacking themselves, and it's just f***ing every other part of our being up. You are supposed to be an emotional wreck. At this point in the game, it would be crazy not to be! You are mourning the loss of your former self, what was and never will be the same you think. Once this gets under control, and it will once insurance things fall into place, things will get better. No, you will probably never be the same as you were before, but you will still be able to do a lot of the things you once loved again. You'll have to plan, you'll have to take meds, but you will be better than you are in this moment.

    Remember, you already have the hardest part taken care of... You have a diagnosis, albeit many, but you and your soon to be doctors know what they are dealing with. No, there aren't cures, but there are treatments for SLE, CFS and FM. You can get a quality of life back. You will learn your limits.

    Remember, this is aggrieving process. You have lost someone that was so very important in you life...your former self. You will go through the classic stages of grief, from anger, to sadness, to not believing, to finally being ok with it. No, you'll never be happy you have these invisible diseases, but you will accept them for what they are. Don't think you can't life a 'normal' life from here on out. It will just have to be amended.

    Amanda, amended. Amen.

    We can do this together. Don't you dare give up or quit or anything else and leave me in this alone. For "I walk beside you, wherever you are, whatever it takes, no matter how far. Through all that may come, and all that may go, I walk beside you, I walk beside you."

    We found each other for a reason. Maybe it's just for a sense of sanity, or maybe for a shoulder to cry on. But I'm here for you, and so is your family and your love, Sonny.

  3. Thank you Tammy! You've been such a wonderful sister and friend throughout all of this crap. I love you dearly!!

    Miranda - you're right!! I loved who I was. I was such an amazing person, sister, daughter, and friend. I was outgoing and witty, sarcastic yet caring, adventurous but oddly cautious...and so many other things. I have a lot of learning ahead of me. And, I'm sure I'll still be an emotional wreck for quite sometime after starting all the medications (even the anti-depressants). This is a lot for anyone to go through. I can't believe that so many of us do it though...every damned day!!
    I'm glad I found you on BYDLS!! I have a good feeling about you :-) You do make me laugh. That's for sure! I'm lucky to have found a new spoonie sister like you!! And, I'm here for you also!!

  4. Thank you for sharing this with the world, I feel trapped at times and I have insurance however everything they put me on I have bad side effects to that I live most of my time in bed sleeping or trying to sleep, then it's up and down all night long.

    now with the time change my body has to readjust.
    trust me your not alone out here. I appreciate you sharing what your going threw.

    Try to get some rest and have a Beautiful Day some how.

  5. Thanks sweetie. I hope that I do improve with medications. I know that side effects can be worse than the original symptoms on occasion. It's never easy figuring out which is worthwhile. I went through a lot of medication "hell" with my GI doctor a few years back. It was not pleasant, and it caused a lot of additional problems that thankfully went away a few months after stopping a couple of the medications.
    I wish you peaceful and restful sleep, and plenty of spoons too!!
    **gentle hugs**

  6. I'm so glad to have found you too! I've never had a sibling, so I'm so happy to have a spoonie sister! <3

  7. I have plenty of siblings, but another one is always welcome into my heart and life. One of my sisters has Fibromyalgia, and so does her son. It's easy for her to understand some of what I'm going through. But, it's still hard to explain with all the "extra fun" my body is going through with this auto-immune hell called Lupus.
    Miranda - you have been so kind to me, and I'm so glad I found you on BYDLS!
    I'm always happy to find another spoonie friend. I've found so many "winners" in the new social networking circle I've found for people like us. It's refreshing to know it's not just me...and I'll be able to encourage those spoonies who encourage me daily!