View Full Version : Hello Everyone....

07-18-2006, 07:24 AM
I just wanted to say Hello. I just registered. I have not been able to drive myself anywhere for the last two months and it just hit me today to see if anyone else has become a "hermit" and is going stir crazy. :roll: I swear I don't know what is worse, the pain, or become totally dependant on other people. I have always been the "big dog" and this whole experience has been mentally challanging. I'm sorry for jumping right in and depressing everyone. I really do look forward to making new friends that truely undersand a life with SLE. God bless.


07-18-2006, 09:07 AM
I hear that!!! Asking for help SUCKS!! But, it gets easier as you realize what happens if you don't...

I don't go out a whole lot either, but every once in a while I do. And I make sure that at least once a week I go out and hang out with friends... Friends who "get it"... The ones who DON'T, I limit my time with...

07-18-2006, 09:09 AM
P.S. WELCOME to the board! It's a great place!

07-18-2006, 09:09 AM
Hi Kathy:
Welcome new member. I am also new and yes I do know what you mean when you become a "shut-in". I also am extremely independent in nature and asking for help is not something I do easily or willingly but with this disease you come to realize you don't have much choice. I have always been the caregiver and now needing care has really shown me some humility and who my friends are. My husband had to make a lot of adjustments dealing with this disease also, sometimes we tend to forget we aren't the only ones suffering and making adjustments.

My own mobility has become more and more limited over time and it was a big step for me to begin to use mobility aides to get around. At first I was embarassed but now I'm over that because at least I can get outside and around. My husband had a difficult time dealing with it also because if I needed a mobility aide to get around that meant he would have to accept the fact that I was limited and ill in some way (that was hard for both of us to admit). I always use a cane, sometimes a wheelchair (helps in the house to roll around and cook, do dishes etc.) and a walker (mostly in the home especially in the mornings when I first get out of bed). My most recent purchase was a scooter for outside, shopping etc. Now I can walk the dog and get outside to smell the summer air. We live in a beautiful old neighborhood by the river and I so missed being able to walk around. Now I can view the latest landscaping in the neighbors yards from my scooter. There are ways to become more mobile, they just take some getting used to. We are also considering installing an elevator in our home because neither my husband or myself want to move and we live in a two storey house. Water is me place of freedom, the only place where I can move my body uninhibited so I make sure I swim and/or do water aerobics at least 3 - 4 times a week. It also is my de-stressor and maintains my muscle strength thus reducing my pain. It it sometimes all I can do to drag myself out of the house to our local YM-YWCA but it is always worth the effort. I use my cane or take my walker to the edge of the pool and then WAA--LA F R E E D O M !!!!!!!

There are lots of things about this illness that are difficult to deal with but one thing I know for sure and that is there are people out there that understand exactly what we are going through because our struggles are also theirs.

Keep the faith, take care of youself and hope to hear more about you
and your situation.

07-18-2006, 07:52 PM
Hi Kathy,
I felt the same as you. You find out who really "gets it" and who doesn't. I used to walk daily (4miles), and hike on the weekends 18 mile days, I was so active. I worked full time, and joined everything. Well life did change. After six years I still have to ask for help, it has gotten easier over time. I have been lucky, I have a wonderful husband who has been there through it all. You learn to adjust to your life, the depression does get better.

Welcome to this site, I'm new too and I just love it. I say put a smile on your face and all of a sudden life gets better, really.

07-20-2006, 03:50 PM
I just wanted to say Thank you for the warm welcome. Sorry it has taken me so long to say so. I have had a really hard last few days...or should I say harder. There is no such thing as good and bad days anymore...only bad and worse. I have gone thru the site and read some comments. There was one young lady who said she could not afford this disease. Amen. I don't have health insurance and no hope now of getting it. Today alone I spent all day at the hospital getting an ultra sound, chest x-ray, and more labs. I will start meth injections next week along with the pred, plaq., pain killers, mus. relax., etc. Isn't it amazing that an entire family can go on a 7 day cruise cheaper than we can get medical care. Can anyone say PRIORTIES!

I am blessed with a wonderful husband and my "children" (birds and dogs) As a matter of fact on of my children just informed me that he is, and I quote, "a sexy bird". Gotta love em. :silly: I still say they are the best medicine. Now I can add all of you to that being blessed list. Although I have not written much, which I promise to get better at, I get comfort from reading what has already been posted. Everyone seems wonderful and I wish the best for each of you.

Well, off to ebay....need to check out all of the stuff I don't need but have to have.

The New Friend,


07-20-2006, 06:50 PM
I understand completely. I don't have insurance either. My physicians are great at giving me samples and working out payment plans. I hope that you do feel better soon. I too believe that this is a great find and I thank God for this web site.

07-22-2006, 03:10 AM
Hello. I'm jumping in this conversation a little late, but wanted to share with you my experience. I was an avid hiker, and worked as an executive secretary for almost 25 years. Indepence was so important to me, asking for help was out of the question.....until; I suffered a mild heart attack at work. While I was at home recuperating and telling my mom "I don't want any help". As I checked my e-mails the next day , I noticed a sweet message from a friend, and it goes like this:
"friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly".

Having friends is a good thing....and you just made a whole bunch of new friends here. Speaking from experience myself, isolation isn't the answer. It leads only to lonliness....and that's absolutely no fun. Let those who love and care about you become the blessings in your life, you'll both be happier for the experience...and they will be blessed in return for their acts of kindness (smile)

I'll keep you in my prayers. Hang on to hope, it will take you further than you can go on your own.

Take Care,