Multiple Sclerosis and Me

by Esmeralda 11 Replies latest jw friends

• 

  Esmeralda

  Hi Everybody,

  Since I posted in another thread mentioning that I have M.S. and it came as a surprise
  to some, I just thought I'd clarify a bit...

  This is why I am so lousy at answering e mail, guys! This is why sometimes I miss answering
  posts that are addressed to me, even though I try to keep up with them. Without warning
  my vision might go all funky on me, hands go numb and its hard to type, you never know what
  you'll be feeling from one day to the next.

  I was diagnosed with M.S. last fall after a hospital stay and 2 months of testing. Most likely I have
  had it for years, as I was misdiagnosed with something else before and now know better.

  I posted about it on my website, here's the link if anyone wants more info. There
  are also more links to info on Multiple Sclerosis in case anyone has a friend or loved
  one with the disease and wants to understand it better.

  http://WTSurvivors.homestead.com/MonSter.html
  http://WTSurvivors.homestead.com/MSInfo.html

  Thanks to all who have given me such great support during the past months. My family has
  totally ignored my situation and upheld their shunning despite my illness, as I know that they
  have done to many of you with more serious ailments.

  I'm not posting this to get attention, in fact it's not necessary for anybody to reply...I just wanted
  everyone to know that if there's a lag in my replies or if I disappear a few days at a time its
  due to circumstances beyond my control...not because I don't care. I'd hate to think
  that anyone thought that I allowed time to pass between replies because I was rude or uncaring!

  I will continue to try to keep up as best I can...I may have MS but it doesn't have me! I
  participate as fully as I can on the good days...and sometimes on the bad days I just read. You
  all are an inspiration to me, and I'm grateful that this forum exists.

  Love ya'll,
  Essie
• 

  mommy

  Hey
  I just sent you an email
  I love ya,
  wendy
• 

  TR

  Hi Es,

  One of my best friends has MS. He controls it with some sort of injection that he takes every other day or so. If you're unfamiliar with this treatment, let me know and I can find out more for you.

  TR
• 

  Tallyman

  Wendy, thanks for the thoughts you proffered in the other thread
  ________________________________________________________________

  Ez,
  MS is one of the (few!) medical acronyms I've managed to dodge,
  so far.
  I've read your webpage about health struggles and will say that I think I can "pull rank" and that "I've got you beat"... maybe even you and MommyDark put together. I've been living with with this DD and its constellation of symptoms & manifestations for almost 25 years.

  Here's a short list of diagnoses I've gotten by medical doctors in the last quarter century:

  Sjogren's Syndrome
  Epstein Barre virus
  Chronic Fatigue Syndrome
  Chronic Fatigue and Immune Dysfunction Syndrome
  Fibromyalgia
  Hypothyroidism
  Leaky Gut Syndrome
  Candidiasis
  Stomatitis
  Multiple Chemical Sensitivities
  Chronic Insomnia
  Pernicious Anemia
  Low Red Blood Cell Count
  Abnormally Large and Irregularly shaped Red Blood Cells
  TMJ
  Acid Reflux
  Gastrointestinal problems

  (am I a Schick Pup, or what?!)

  I'm having a flare-up, BigTime, for the last 4 weeks.
  Seems to happen every Spring, but also is triggered by stress,
  which I've had plenty of, of late.

  Here's a link to Ken Raines website, in which I exchanged mails replying to a husband of a jW in England whose wife has ME(CFIDS).
  He said that in parts of Scotland it is called "The jWs Disease".

  I've wondered about that for some time, since I came down with this life-changing malady during my last year at Watchtower Farms and still feel that those who fall ill to this DD are 'pre-disposed' to getting it, (my hunch is due to a weak constitution formed during an unlucky toss of the dice during that genetic crapshoot called 'Conception'... but that's just a wild, intuitive guess) after it is triggered by the ungodly, unnatural stresses the Watchtowerkult puts on a body.

  I agree with the theory of stress being the trigger that the English letterwriter points to, but I take great exception (thru hard experience) that the cause is 'psychological'.

  THAT'S the standard Cop-Out most doctors give in to when they try to treat you. They don't like to say: "I don't know", because they can't find the exact physiological cause. (must be the 'god-complex') Rather, they slough you off with: "Yes, I do know. Your problem is psychological. I'll refer you to a Shrink."

  * http://www.premier1.net/~raines/rebuttals2.html

  Anywho, hope you do better, and if you ever find a Magic Pill for all this, please let me know.

  T
• 

  dedalus

  Hey Es,

  I totally understand about the lag time caused by your illness, so no worries on that end -- I'm just really glad whenever you are able to post. And when you turned up in the chat room the other day -- well, that was terrific!

  By the way, this morning I read your earlier post, a couple days old, I think, about the anniversary of Jack's declaration of love. It made me smile -- I'm so glad you two have each other!

  Sometimes I think it'd be really cool if everyone could get together for a barbeque. For some reason I imagine it's happen in your backyard, though I don't know what your backyard looks like, or if you even have one. REM could bring his guitar & play some tunes, I'd tend to the grill, you and Jack could curl up under a tree, AlanF & Farkel & Tallyman could engage in some brilliant satirical antics, and later, we could all take turns giving noogies to Fred Hall.

  This is a silly little rumination, just a way of saying it'd be nice to give you a real hug sometime!

  Your cyber bro,

  Dedalus
• 

  Had Enough

  To Esmeralda:

  I am so sorry you have this added burden to all the other family tragedies you have gone and are going through. I'm relatively new here but get so much of a boost from your posts I just had to let you know.

  I posted the following note to you on another thread about an hour ago and I'm re-posting it here because I didn't want you to miss my thoughts to you. I said:

  "Just wanted to say Thank You for all the encouragement I have received from your posts. To my first post a month ago, you said:

  This board is a great place to help you ease yourself back into life after the BOrg. We've all been through one issue or another, and someone here will be able to relate to your experience and help you over the rough spots. Funny, isn't it? We don't shun anyone here.

  Those words above and your own personal tragedies you've shared with us, just encourage me to keep on going even though I feel like I'm stuck in limbo. My surviving parent, sibling and one of my children are all still active members. It just saddens me so much to hear how your family treats you. I just don't think I could bear that right now. I know they would shun me if I made a clean break and da'd myself because they shun my da'd son in the name of helping him to see the error of his ways. So I just carry on doing nothing and stewing over wanting to fix everything and can't. The borg just ties our hands.

  Thank you again for all your encouragement. It helps!

  Had Enough"
• 

  LoneWolf

  Hey, Es ---

  Sorry to hear about your MS. That's a nasty one. I love your comment about you having it but it not having you.

  Thought I'd tell you something that might brighten your day a little.

  My neighbor has been complaining for years now that he has an awful case of Diaphloogus of the Lower Ba-orgatory and that the only cure is to roll down a long flight of stairs, screaming loudly at each bounce, three times a day. Think maybe we could get our heads together and dream up a better cure?

  LoneWolf
• 

  StiLLinTruth

  Hey Ezmie my dear, don't worry about your illness.

  It will be gone in the new world..

  ..providing you make it there!

  :)
• 

  CornerStone

  Hello Esmeralda,

  You totally DO NOT have to apologize for any percieved lack of posting or replies to post. I realise it's just your good nature to do so. A while back you posted some information on MS at my request. Here's a belated thanks, Thank you! It was very helpful to me.

  I do not want to bring you down but I have a friend who has chronic progressive MS, the worst type. He has had it for the last 15 years or so. His life has been a sad journey since he was diagnosed with MS. One sad element besides his wife leaving him to marry his "best friend" and his being confined to a wheelchair is that only TWO JW's visit him on a regular basis. Me and another. All the many "friends" he has met and associated with and assisted over the years can't seem to find the time for a visit or a phone call! He still goes to meetings (gagh!!!) but as you can imangine has become greatly discouraged. Over the years I have felt this brothers pain, not fully ofcourse, as he sat there in misery over what he had lost and where he was in life because of his illness. MS can take so much away. Things like cleaning yourself, feeding yourself, or just going to bed are a luxury to him. How many times have I picked this brother up in my arms to take him for his shower or to put him to bed or to pick him up off the floor where he has fallen from his wheelchair I could not count. I know , however, that it's a blessing to help others and I believe it's a privilage to help him. Not the "I get to carry the mike" type of privilage but the God given type.

  I post this to let you know that there are people out there with MS who know first hand your troubles and that there are caregivers who can empathise with those with MS. You know, if those selfproclaimed, "caring" "brothers" showed half as much attention to my friend as they do to their field service reports, then I would still be trying to be a "good witness" instead of slowly slipping out. It's their lack of love for one another that is proof to me that they are not from God, as Jesus warned. How they treat my friend is all the proof I need, besides dates, false propheies, etc.

  Anyway, I always look foward to reading your post because they are insightful and interesting. So stop apologising, you do a good job as it is. Take care.

  CornerStone
• 

  Tina

  ((((((lil sis essie))))))))) never apologize,you've done nothing but contribute positively ! We love and care about you,Always Tina