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Hello From New Member Bawana

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#1 bawana


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Posted 27 June 2007 - 06:13 PM

(Note: Moved from Getting to Know You Thread)

Hi Sweet,
Thank you for the warm welcome.
No need to be sorry, it's been a very interesting "ride" to say the least. I already outlived the date that the doctor's gave me by at least 15 years and I helped a lot of people along the way, so it's all good. I don't help as many now because I live in a small town and my body is telling me to chill out , lol This Friday I get to find out how bad the kidneys are. Kidneys, Heart and lungs are whats slowing me down at the momentand it can be very frusterating, but I keep up the fight. I will be 46 next month, have 3 kids and a wonderful husband that is there for me through it all. I think I'm very lucky. I know it can be very hard for a spouse to understand but he's always there, good and bad. In most cases he has to pin me down, for my own good because I don't know how to say die or give and can be my own worst enemy. I spent so many years fighting and hiding the scleroderma from my kid's, that I am know no longer able to show my illness or pain. I can be at a level 10 pain and still smile and joke. In the begining I had my doctor take me off all my med's and I went it on my own. I was turning into a zombie and trying to run around after 3 kid's . Plus, I didn't want them to grow up with the burden of seeing their mom always sick and in pain and that's why I learned how to fight and hide it as much as I do. Now I don't know any other way.
A friend asked me once if I'd ever tried herbal treaments. I ended up taking my course and have been a herbalist for about 19 years. I treat myself when I felt I needed to. I am on some med's now because I don't have a choice, mainly for heart, BP and water. My BP won't come down and stay down, if I get a reading of 197/99 , we are happy because most of the time it's around 220/114. lol And that is with med's.
We try to get out to the mountains as much as we can. I love it and it seems to bring the rates down a bit when I can play in the rivers etc. It's only about an hour away, so we go quite allot. I can't do things and keep up like I use to, but it doesn't stop me from trying.
Thanks again for the welcome lol now I'll give you your ear back ttfn

#2 Elehos


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Posted 28 June 2007 - 02:29 AM

Hi Bawana,

I understand not knowing when to stop, and my husband simply shakes his head and chuckles when I make jokes about what's happening. My obstetrician cracked up years ago when I looked up at him in hard labor, in between pushes, and said, "I changed my mind, I don't want kids." Humor is quite a pain killer, and far too many of the chemical ones do the mind in so it's best to limit them.

So you're an herbalist??? Although not certified, I became one of sorts since we are terminally overrun with "weeds" around our yard, and it was quicker and easier to pull the grass and leave the rest. The best decision was to find out what was growing out there, and what some call a weed I call dinner. Or medicine. There's a lovely crop of purslane (a centuries-old veggie from India) coming up this year, and a squirrel decided to plant squash in my front yard (what a vine!), so even if gardening is physically out of the question these days, there's always something growing.

Welcome to the forums, and hope that we can help you out as much as you've helped others over the years. If you want to send a PM with some of your herbal favorites, please do! Although mine are mainly culinary, it seems that the wild and homegrown plants have done wonders.

Best wishes to you,


#3 bawana


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Posted 28 June 2007 - 07:08 AM

Hi Elehos

Thanks for the welcome. I agree laughter is the best medicine. lol I quite often get from my family "thats not funny!!!!" then I just laugh some more and say "oops" I came to terms with this a very long time ago, and passing on from this disease is just a part of what my life is...lol we just never know when. When my family and friends get upset at my joking I ask if it's better that I sit and worry about when I'm going to die or where I hurt etc. That doesn't do us any good and only causes more harm because of the stress, so I chuckle and and say "next" When my kids were small, I just kept telling myself, " I have to stick around long enough so they can look after them selves" Now it's the next thing in line lol like , getting back to the coast and walking the beach while I can still walk on my own, etc. Many doctor's have told me " you're not normal" My husband just laughs and say "tell me about it " I have to be strong for myself and everyone else, but I sometimes get to the point where I've had enough and am tired of fighting and being strong and I want someone else to take care of it for a change. Not to much about me is normal or usual. My SD started on my leg, rather than my hands or face, I was localized and am in the 5% that go systemic, I don't have the classic SD face or hands etc. Told my doctor , if I came into see him like normal people do....I might as well just set up a cot in his office. lol I stay away from doctor's unless there is something I can't handle myself. For the most part, all they can do is treat the symtoms and see where its gone. My physio guy tells me I'm funny because I always have a smile and a chuckle no matter what.

This is a tip for any of you that don't already know.

In physio they have a cold lazer. They can use it in pen form or what they call a bomb. When the joints get real sore and the mobility lessens, you can get this done and it's great. I get my shoulders and knees done. Its wonderful. What you get from it is, No side effects(like we get from meds) way less pain and more mobility.

Now the herbal end of things....sure I'll send you a PM on some things if you like just let me know what you need info on. I still help others just not so may SD patients any more. Only because I think I'm the only one in town that has it. There was one other but have since gone.
There are many things that we can take and do to help us but we have to be careful because some herbs and suppliments can't be take with certain conditions or doctor meds you may be on. Yes , I am papered lol but I have never set up shop. Mainly because I never no what I'm going to be like from one day to the next. So people come to me.... lol... when they can find me.
Take Care......ttfn

#4 Sweet


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Posted 28 June 2007 - 12:16 PM

Hey bawana,

Wow, thanks for the long post. I love your positive attitude. I think these days it's the rare person that actually dies from this disease. The key is balance, keeping stress low, knowing when to lay low like you talked about and just plain taking care of yourself.

Sounds like you husband is a gem, better keep him around!!

I also use several herbs, I lean towards natural remedies but do take a couple of prescriptions. Keep up the good work!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 bawana


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Posted 02 July 2007 - 06:08 PM

Thanks Sweet, yes he is a gem and keeps telling me he's not going anywhere.

He's gone through , (I think) sometimes more than I because he has to sit and watch alot of things he can do nothing about and feel totally helpless.

That is a very tough thing to do. There is only so much our spouses and families can do and it's so hard on them to watch the pain and suffering that we go through.

My hat goes off to to all of you out there that are on the other side of this.
You're a great lot and we love you for it. We'd most likely be lost without you.

Take Care All


#6 WestCoast1


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Posted 02 July 2007 - 06:58 PM

Welcome Bawana,
I am sorry that you have had such a struggle with Scleroderma. It sounds like you have come a long way however. Your story really gives me hope, it reminds me that a positive attitude and inner strength are so important to win this battle....thanks!