Posted 12/30/2003 2:38 PM (GMT -7)
Dear Brynn,
I just lost a long reply I tried to post to your reply. I will have to try and post again to you. Anyway, I hope you get this, and thankyou so very much for being here. Wholebon
Posted 1/2/2004 11:59 AM (GMT -7)
Dear Brynn,
     I hope my computer doesn't lose this reply as it did last time I tried. I just wanted to again thankyou for your warm welcome and tell you it felt like water to a parched  and very thirsty soul.
     To answer your question, regarding hobbies, yes, I enjoy making floral wreaths etc. something I don't do often enough though, as well as being a voracious reader. I love the outdoors,and try to get out for walks whenever I can. Like many of us, it is so frustrating not to have the energy anymore to pursue all my passions, but at least I have the abililty to do the above. Yet, I am increasingly lonely, as the CFIDS, IC, EI, and other symptoms have left me very isolated.
     I also appreciate that you have a background with working with disabled children, because I do not have any support around this either. Even though my son is now 24, and working full-time, he still requires me to always be in the care-taking mode and I sometimes just feel like running away from all the responsibility. I do have help from my partner, but I am still the one who is on call 24/7 .
     My food and chemical intolerances really keep me very restricted as I can only eat a few things and have to cook all my own food. Even when I travel, I have to cook all my meals ahead ,put them on dry ice, and bring with me.So just taking care of myself is a full time job. And over the last few years I have just about given up trying out new therapies, meds. herbs, treatments, just from sheer exhaustion. Also, I have never been very lucky with results: either my IC or CFIDS reacts and I get flare-ups from natural remedies as much as meds. etc.
     Just recently, I finally got to a compassionate doctor regarding earthquake hot flashes and night sweats and I was tested using saliva test for hormonal levels. A special compounding pharmacy made up a bio-identical natural progesterone cream for me: I felt the positive results almost immediately:I felt less depressed and better energy. But within days, my bladder was in uproar and I had to discontiune it. I am feeling very hopeless about myself at this point .My body just won't tolerate anything and the ramifications for me at this point in my life are very very frightening.
     I don't mean to scare you away.I just have so many areas in my life that are not working.Yet, in spite of all, I have never given up completely. That is why I am here. Just sharing some of this with others who can relate, is a positive in my otherwise very restricted life-style.
     I hope to be an active member here and I will also check out other sites as you recommended. I am slow but I am persistent. Take care and thanks again for the affirmation. Wholebon
Posted 1/6/2004 1:13 PM (GMT -7)
Hi WholeBon,
I have that problem all the time.  I am always losing messages before I can get them posted.  Sometimes, my mouse strays into the links that are just to the right of the box where you type your message, and it goes off by static, or I bump it.  Half the time, my cat jumps onto the keyboard and I have no idea which key she has hit, but the message is gone.  Then occassionally I forget you can't leave the page, by the back button, or forward or any link.  One of the other moderators composes her messages in Notepad, and pastes them into the message window, so she doesn't lose them while composing.  I haven't yet resorted to that, because I like to use the colors and bold, and such.

I remember being in a place like you describe, where it just takes all the energy you have just to stay alive.  And I was slipping fast, had all but given up when I finally convinced a Dr to treat my pain.  Ever since I've gotten some marginally reasonable pain control (there is still plenty of pain and plenty of room for improvement on the pain control--but I have to play the Drs' game, unfortunately), anyway, since we've partially controlled the pain, I've started to catch back up, but it's been a long slow journey.  So I can definitely relate.  Especially the cooking.  For somewhere between 3 to 5 years, all I could eat was beef, chicken, potatoes, butter, salt and water. PERIOD.  No seasoning, no simple herb tea, no juice or soda, no vitamins, those 6 things and that was IT.  Of course, no Dr could believe it, they all thought I was a psyche case, and of course, you don't give pain meds to psych cases.  It was absolutely a nightmare, so believe me, I understand.

I never got any results from the herbal treatments and vitamins and natural this and that, either, and gave up on it all several years ago.  If I could just have all the money back that I spent on that stuff, you know...:-l

"Earthquake" hot flashes???!!  lol!  Does that mean the earth moves when you get hot, kind of like a volcano?!!  No offense, it's just a description I've not heard before.  I've been through both the hot flashes and night sweats.  I did it "cold", with no hormones or anything, and it's all over for me.  And the hot flashes and night sweats were my worst symptoms, night sweats being the worst of the two, and they were just massive sweats.  I would wake up completely soaked from head to foot, including nightclothes and all the way through the sheets to the mattress, hair wet even.  I'm really glad it's over!  Regarding the cream, though, I wonder if you started using it very gradually, whether you might build a little tolerance, so that you can still benefit some by it.  Benefit some, if not as much as if you used it all the time.  Like maybe use just a tiny amount once per week for a month.  Then twice a week for a month, then 3 times, then maybe start using a little more but still 3 times per week, etc.  So maybe you can identify an amount that you can use safely, that might not be a full effect, but at least a little bit.  Who knows, maybe starting it just really slowly, you might eventually be able to use a full dose.  I don't know, I'm not an expert, but it's just a thought.

The floral wreath-making sounds really neat.  Do you mean using dried plants and flowers and stuff, or do you make "live" wreaths?  I think creativity is my most powerful healing tool, meaning that I make the most progress on emotional or psychological issues when I approach it creatively.  I've had some art therapy and some music therapy, and I write on my own, without special therapy.  I think that it is a means of resolving the issues on a level not possible by simply talking, a level from which maybe the problems started in the first place. (if that makes any sense)  Which is not to say I do creative projects very often!

You mentioned feeling stressed out about being on call for your son 24/7.  And I'm wondering if you've ever heard of respite care?  There are several different organizations that I've heard of, that offer respite care.  In case you haven't heard of it, it means you would be able to leave your son in the care of licensed and insured professonals for some period of time--a weekend or a week.  The whole idea is to relieve caregivers of that 24/7 responsibility.  Most people that use these services are either parents of ill or disabled children, or children of aged, ill or disabled parents.  Anyway, if you might be interested, I would suggest contacting your local United Way agency.  They usually maintain awesome lists of agencies and other resources for people in need(any kind of need).  And most of them have websites with fully searchable databases, so you could look up the agency or group or individual that provides this service, yourself.

Don't worry about scaring me away, because I've had as many problems as you.  I've scared people away myself.  I don't think anyone who has CFS would be scared away.  We all know how it is.  Well, I've probably gone on for long enough.  Hope you're doing well as possible.  Take care.

brynn,  Moderator for Chronic Pain forum
            and Chronic Fatigue Syndrome forum

Posted 1/10/2004 3:38 PM (GMT -7)
Dear Brynn,it means the world to me that you are keeping in touch with me. I have never ever networked on-line about health stuff(I had a friend for 10 years on a phone list for IC but she got well, I did not she is no longer interested in maintainint contact--very very painful.)so every time I post here I feel so vulnerable on a lot of levels as you can see from above ex. Yes, I am looking into respite care, and thank you so very much for all the great and healing energy you are sending my way. Doctor and compounding pharmicist don't know what to make of my weird reactions to hormone( feels like Ic and candida yeast) driving me nuts, but I am trying to hang in there.Saw great PBS special about ABe and Mary Lincoln, both had bi-polar especially Mary and finding strength in how especially ABe coped with his horrific personal problems and still did what he did. It was so moving, and I try when I am so ill to take inspiration from anything etc. It feels wonderful to know you and I honor all your talents and stengths, and compassionate self. I love that you use your creativity to transcend physical.Yes, I think we all go into a limbic brain mode and start producing alpha waves ?? when in the zone and we don't feel the pain or whatever and it is so healing to mind and body and soul to have creative outlets.Thankyou for being here dear one. Wholebon
Posted 1/16/2004 11:06 AM (GMT -7)
Oh, you are very welcome!
brynn,  Moderator for Chronic Pain forum
            and Chronic Fatigue Syndrome forum

Posted 1/16/2004 12:38 PM (GMT -7)
Hi Brynn, hope you are feeling a little better at a time from your chronic pain intervention. I am not doing well and when I am like this I just like to isolate. So happy to see your response I felt like just connecting, so much healthier to reach out for connection than to isolate. It is very cold here.I live in Northern N.J. I am having a terrible problem with trying to tolerate medication etc. or even supplements. It seems I think I have figured this out on my own thru reading that reason I can not tolerate natural progesterone is that my changing female hormones are making a very alkaline environment. And this is where yeast thrive! So just taking even a little of nat. progest. causes a huge infection.So going to try home remedies to try to make it more acidic. But the rest of my body systemically is too acid so Ihave to change that to more alkaline. But I cannot tolerate the foods or herbs to do this, so I am in despair. But I have to keep trying because my body is dying I can feel this on a very profound level.A lot of it is from stress that is why I am so acidic in the wrong places and too alkaline in the wrong places. Enough to drive me crazy!!I wish I could take a vaction from my body!!I am so drained from all this and it just keeps coming. Thankyou for listening to my frantic cry of frustration. Sorry Brynn, I know you are dealing with so much already. On a positve note, I started doing a little Tai Chi again.
Posted 1/18/2004 10:29 PM (GMT -7)
Hi WholeBon,
Hey, that's great about the TaiChi.  Maybe it will counter some of the stress, in turn righting some of the acid/alk problems.

I know what you mean about sensitivity to everything. I'm not sure if I mentioned this before, but I had a treatment a couple of weeks ago (for pain), that I had not had before.  I did have a very small amount of relief, which is really good news.  It indicates that eventually I may be completely cured of this particular pain.  It's a long technical explanation, and I won't elaborate.  But I will be having the treatment, which is an outpatient surgical procedure, once per month for awhile.  So I'm trying to get psyched up for that.  I'm all for the pain relief, of course, but the sedation is just so hard on me.  Took me a week last time, to get over the worst of it.  But still 3 weeks later, I feel like it's finally completely out of my system.  While repetition of the treatment will increase my pain relief, I don't think my sensitivity to the drugs will get better.  I'm not quite sure how I can prepare myself for that part of it.  So if anyone has any suggestions, I'm open to hearing it.  Best wishes.

brynn,  Moderator for Chronic Pain forum
            and Chronic Fatigue Syndrome forum

Posted 1/20/2004 1:09 PM (GMT -7)
Dear Brynn, off the top of my head, I was thinking of possible things to help with side-effects.1. Talking to your doctor/anesthesiologist to see if any other drug options that might have less chance of after effects(I know this is a huge issue for those of us with chemical senstivity).2. Drinking plenty of water afterwards to flush system.3. Using liver flush for home detox. 4.Build self/immune system up with vits/green foods/juicing etc.; anything else that would strengthen your system(Vit.c, other vits and herbs let me know I will reaearch for you)5. Self-hypnosis to perhaps learn to not get overly stressed by your reactions;(you know you get a reaction physically and then mayexacerbate this with obsessing etc. about it which makes it even more stressful and perphaps lengthens time to fully recuperate; I once learned how to do self-hypnosis and it was really neat.)Or affirmations that even though have temporary onset of reactive symptoms, know that this is very temporary and not dangerous and that you are getting better and better even if in moment may not feel like it.And/or affirm body and thank it for responding to pain reduction and tell it you will never abandon it and only want to help it get stronger and healthier.
Again, I love connecting with you, Take care. Wholebon
Posted 1/22/2004 11:16 AM (GMT -7)
Oh, good ideas, wholebon! Thanks, I'm sure I'll be able to find something that works. I'll keep you posted!
brynn,  Moderator for Chronic Pain forum
            and Chronic Fatigue Syndrome forum

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