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Long time no write.... Long time no write....

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  #1  
Unread 04-26-2004, 10:38 PM
Long time no write....

How is everyone? Still here I see...

Well it's very very late here and while I'm waiting for a work item to load, I'm typing you guys an update.

Well...the news is not good, but at least I know what I'm dealing with...I think.

I cant remember the last thing I typed re: myself, so here goes:

After many moons and alot of pain I found a doctor who did a VERY thourough exam and complete physical history

The conclusion: Multiple Auto Immune Diseases and to boot... Lyme disease.

MUID: Stuff like Lupus(SLE), Psoriatic Arthritis, Sjorgen's Syndrome, Reynauld's Syndrome, Illitis, and the list goes on.

Guess, I know why I've felt so horrible eh? And why I felt fine for a while, then blam!

I began a regimine of drugs to help. It did help. For the first time in a long time, I felt like a human being. For a whole 3 days I felt GOOD. Then whammo! Vision failing again, pain, lots of swelling, etc. I don't even look like myself anymore. Oh...and the tremors. They're pretty bad now (so pls excuse spelling and typos).

I haven't forgotten u guys...it's just well...hard to do the things I NEED to do (and frankly I'm not doing them all) let alone the things I want to do.

Doc says destress or die...so everything than can go is.

However, if there's people with endo ?'s - please send them my way. I had trouble finding a post LOCKI set up...LOCKI if you read this, please send the girl my way...I'm glad to help when I can.

There's alot I want to say, but I don't have the strength to say it - a common theme lately. I can't sleep, but no energy. Go figure.

I think of you often and hope and pray for you all.

If I could impose, please pray for me just one more time...that God will guide me where he wants me to go....where I'm needed. Where my purpose is. And in particular...help me through some tough decisions. I need to get down to basics. What fills me up, what empties me completely.

I have a meeting soon to decide about fmla, after that, one about chemotherapy. I need money, but in order to make it I just might have to kill myself (simple things seem to do wierd things to my body depending on the day, the mood, the moon, the light, the whatever...it seems I'm allergic to life).

Oh, and endometriosis is an auto immune disease still hanging round. I never got rid of that old friend....probably never will.
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  #2  
Unread 04-27-2004, 08:04 AM
Long time no write....

's Adrite

I'm so sorry that you're having such a rough time. I will keep you in my prayers always, and I do hope you can find some relief. Do hang on. I had/have endo too and also fear it is something that may always haunt me.
We are always here whenever you need to drop in.
Big 's
Shelley
  #3  
Unread 04-27-2004, 08:04 AM
Long time no write....

Andrite:

Thank you so much for popping by to give us an update and for sharing the spoon theory link. I'm saying for you now.

Lord, please lift Andrite into your loving arms. Please give her Your peace and guide her as she walks through the special journey that is uniquely hers. Help her to realize Your purpose for her and to have comfort in knowing that she is doing Your will.
Amen.

I am truly sorry to hear you are dealing with so much. But, it sounds as if you are dealing with it all well. It must be scary to have your doctor say "destress or die".

I had to go on zoloft to learn to slow my mind down, give myself a break and just in general get a handle on the stress. I feel so much better physically because of the mental changes and I am not dealing with nearly as much as you are. Still, I have a real appreciation for how stress impacts our physical state. I do wish I could have done this without medication, but I am not dwelling on that .... part of giving myself a break.

Lots of gentle healing s for you, dear sister.
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  #4  
Unread 04-27-2004, 09:58 AM
Long time no write....

Oh ((Angie)), my Dear friend
I'm so sorry to hear of your DX's but am relieved you at least know now what to wage that battle on
I'll be praying for guidance, for some relief for you Pls know my thots are with you often and that I'm here if you need me, for anything!!
Thanks for the update.....(((((((hugs)))))))
  #5  
Unread 04-27-2004, 06:59 PM
Long time no write....

((((Angie))))) It's so good to hear from you again I'm so sorry that you're still struggling with so many things I always wish and hope and pray that when a Road Dweller isn't posting for a while, it's because she's, finally found the Off-Ramp... doesn't happen too often, unfortunately.

I remember you posting about the Lyme disease and how it explained so many things. Hopefully, finding the cause of your health problems will also bring about the relief that you so badly need

Have you gotten back to your doctor about the symptoms all coming back after 3 days? From years of having to deal with med adjustments for DS, I know that the body will need some time to adjust to new meds, almost always. Sometimes, the adjustment period involves humongous and unplaisant side effects (that's usually my case). Other times, it means that you'll find some miracle relief for a few days/weeks only to be find that you still need some tweeking/adjustments once your body adjusts to the med. Relief in this case may just mean upping the dosage a bit.

ps: I know, I know... I'm preaching to a lady who knows much more about meds than I do!!!

(((Angie)))) Do take care and you know that ers and good vibes are going your way to help guide you into making the right decision for YOU.

Take care, dear friend.
  #6  
Unread 04-28-2004, 08:29 AM
Long time no write....

Angie,
I am so sorry to hear that you are feeling so badly. With
the new diagnosis, I was so hoping your journey on this road
would end. Since your hysterectomy, you have been dealing
with many health issues.
I pray that God directs you to the right doctors, and grants you wisdom to make those difficult decisions. You have always been a fighter. Please don't give up the good fight!!! We're behind you all the way, Angie!!! Hopefully, something good will happen to
turn things around for you. There's always hope!!!
I did PM the endo sister, and asked her to PM or e-mail you.
Thanks for offering to help when you are feeling like this.
  #7  
Unread 04-28-2004, 08:49 AM
yup...

I called her and she's wonderful!

However, the next step for me is probably Chemo.

I'm ok with it (I think). Anything is better than nothing right now - except of course the surgery the Uro guy wanted to do. I 'ixneyd' that one - with my new docs blessings. I just have to get the inflammation under control...right now...I dont care how that happens. If you dont mind...just pray I find my place in this world and can get some support financially if it comes to finally laying down my job responsibilities...That's weighing on my mind...but all I can do is turn it over to God. And pray...

Any experiences with Methyltrexate?
  #8  
Unread 04-28-2004, 05:00 PM
Long time no write....

((((Angie)))) ers are going your way... and lots of fingers are crossed, hoping that you find your niche... and a way to manage all of this
  #9  
Unread 04-28-2004, 05:38 PM
Long time no write....

(((Angie)))
Your sisters are ing for you. I do hope and pray that you find the answers and relief you are seeking. Many, many s my friend.

Yeppers, I'm still here. Guess I'm one of the ones who once they enter can never leave. Have found a bit of help with the Osteo doc and an accupuncturist. Not 100%, probably not even 75%, but have a few good days. Also learning to listen to my body. And dh is learning how to listen to MY body also.
  #10  
Unread 04-29-2004, 12:03 AM
Long time no write....

Dear Adrite,
I am sorry that you are suffering so much right now. I think we can all empathize with you at some level. Thank you for sharing the site with the analogy of the spoons.
The other day I was having a particularly hard day and I shared some things with my sister who lives across the country. A card came in the mail days later. I would like to share it with all of you sisters. It begins:

I worked closely with Mother Teresa for over thirty years...One day, after my conversation had been filled with a litany of problems, some seemingly insoluble, Mother Teresa remarked, "Everything is a problem. Isn't there another word?" I confessed that I knew no other word that carried the same weight. "Why not use the word "gift" she suggested.

The inside of the card reads:
Everything that happens in this life is a gift. Even as you go through this difficult time, you are gaining strength and wisdom that will help you further down the road. So, although you may not be able to see how everthing will turn out, trust that God is working through this for your highest good- and please remember I'm here for you- if and whenever you need me- to help in any way I can.

Then my sister wrote at the bottom:
Remember, the Lord doesn't require us to run faster than we have strength. He just asks that we be patient with the process. It's ok that you don't have all your strength back yet. I do believe it will come. I love you!

Like the lady with the spoons I am now living my days as she does. In my heart I don't really believe that I will regain all of my strength back, but I recognize that I have to be careful how I spend my spoons. I feel such a loss with this realization, however, it is a reality and nothing is going to change that. There is always hope for a miracle, but I think the miracle is making it through one more day. Adrite, I haven't been on in awhile either. I have a lot going on right now and it takes so much energy to write, but there is a pray in my heart for you.
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