Please just check in and update us all.....

[Diandra]

Hi,
I don't think this has been done since we have moved to this new system(I apologize if it has). I find myself wondering, gee, did so and so find their way here to the new board and how are they doing......so, please drop a note and say you found your way here and how you are doing. I miss so many people and want to hear how you are doing.

Relatively, I am doing well. Since Hurricane Irene ran through CT we were blessed to only have lost a few major trees and they did not hit
anything substantial. My overall pain level is down despite the fact I am dropping(very, very slowly) my opiate and soma dosing. I am increasing Lyrica and Lidoderm patches a bit and that helps and I am going very heavy on healthy eating and alternative stuff and low impact exercise and honestly, lots of prayer. I am also extremely fortunate to have had two family occasions almost back to back which meant travel and seeing beloved family members I have not seen, some for decades. Travel has often been hard on me pain wise but I have been finding ways to cope. My husband went with me on both trips and he handles alot which makes travel much easier. Basically, I am working very, very hard on focusing away from pain/health issues. For awhile there I was getting so distraught and down....you all know the the drill and what a roller coaster dealing with pain can be. Happy to say I'm on the upswing.

So my friends, I look forward to hearing from you no matter where you are on the roller coaster.
Bless you all, Diandra

[tortoisegirl]

Hi! I'm doing ok...could be worse. I have 24/7 headache plus other chronic pain problems like fibro, IBS, etc. Still having high pain levels since I have become tolerant to my pain meds and my doctor won't increase them. I have had no luck finding any more aggressive of a doctor in my area since WA is ridiculous in that way. So, I'm going to keep my narcotics where they are and go back and try some other approaches. Recently failed Botox and Cymbalta, so I'll move into a list of meds I made that could be helpful which I haven't tried. Actually struggling right now with my second round of Botox because it was all put into my neck and shoulders and now I'm having crazy muscle weakness which causes pain. Worst case it slowly gets better over the next 10 weeks.

My doctors have said they have no further ideas so hopefully they will be receptive to my research for meds to try. Of course now I have a two month wait for a neuro appointment. Might be able to convince my primary doc to increase my muscle relaxer and try me on one of the more benign meds in the meantime though. I've just been struggling lately with work since I've been commuting two hours a day and have been in a rough spot with my health/pain. At least I kicked some of the worst tummy problems with my recent special antibiotics for bacterial overgrowth in my intestines though. My biggest goal at this point is to not develop any more conditions since they have just been piling up since this all started 5-6 years ago. You have got to celebrate the small things in life and be thankful its not any worse. Best wishes.

[Mark N]

Diandra, good idea I hope we get people to check in and not just read the post. I have been holding steady since my doctor has quit changing my testosterone injections around. I do notice though that I can do less and less as time goes by. It is hard to tell how much is the result of my spinal condition and how much is due to getting older. It is frustrating now and then to not have the stamina to finish simple project. I find it takes me several weeks to do chores around the house that would have taken me a good hard day of work years ago.

tortoisegirl, it is good to see you check in. Sorry to hear you are still looking for some answers for your pain.

[alex44]

Still Around

I'm still here , Just lot's of problems - Got hacked, May still be infected, although I doubt it or i would not post this and put anyone else at risk.
Pain is constant, controlled but constant, Home life , well..., hope everyone else is O.K.
Blessings
Alex44

[Diandra]

Hi, SO good to hear from all of you.

Tgirl...I honestly don't know how you do what you do. To endure daily pain AND work. I'm happy for you in the regard. I have tried botox twice and the first time it was great and the second, like you, I had some weakness in an area I did not want it. That is the crap shoot of botox but for me, when it worked the first time it was wonderful. You said your doc won't increase your current meds but, will he let you try others or have you done them all already? Glad your digestive problems are getting better. I have used Align with some success. Now I have some crazy 4 hr breath test I have to do to detect bacteria overload in my digestive tract.

Mark - It is hard to know what is age related and what is disease progression. I think we have to be our own best detectives as we know our bodies better than
our doctors. I know what you mean about stamina and with me it is not only the physical energy, it is the brain power to do things. Lyme Disease did some damage to my brain so I have impaired "executive function" which means the ability to organize and focus one's thoughts. I have to work really hard at planning anything, even simple things like food shopping and coupons really tests me but I have tools that help me(lots of lists, post-its, white boards in each major room). Mark, do you mind my asking why you were dx'ed testosterone injections and how did they help you? Please, if it is too personal, you know I understand.

Alex, I found a guy on craigslist who for $50 came over and completely debugged my computer that had become riddled with viruses because I let my
security software lapse and now it runs faster than ever. You are probably smart enough to do it yourself but, I needed help. He did alot to get rid of old stuff on my computer and got rid of MacAfee and I just used Microsoft Security that is free and a bunch of firewall and some cleaning software. So far so good.
Glad your pain is controlled and really hope your homelife gets better than "well..". I know you've had so many roadblocks in dealing with the VA and
your health issues the frustration of it must make you want to stand in the street and scream. I have to say I thought about you last night as I was watching the struggles of the 911 first responders and all the illnesses they are now getting due to breathing in all that toxic air around ground zero. If our country does not take care of the people who take of us, no one is going to step up anymore.

Good to hear from you three....hope to hear from many more.
Take care, Diandra

[Kathi49]

Hi Diandra! I am just checking in as you requested. :) I am still basically the same with the exception of my left ankle which will have to be looked at. I just haven't had much time at all since April 1st; mother's open heart surgery and subsequent gall
bladder surgery, painting, landscaping, etc. (done by others of course) around the house and the birth of my granddaughter. :) To be honest, I really haven't had that much time to post and when I do, I am normally on FB. But I still read from time to time I just don't have much to contribute since most everything is status quo. Oops forgot, had an RF done not too long ago. Anyway, I wanted to say that Align has and/or does help me a great deal as well. Whenever I feel nauseated it really helps!! Oh and Mark, I forgot to say something about that crawly bug feeling. I am not sure if it is the same with men but I can state for a fact that when there is a hormonal imbalance it can cause that feeling. It is just something my Reproductive Endocrinologist told me one time. Then again, you are probably right about it being nerve damage. But I just thought I would throw it out there since I had those sensations a long time ago and shortly after surgical menopause. But once in balance it all dissipated.

[tortoisegirl]

Diedra-That is the same test I did. I got the Small Intestinal Bacterial Overgrowth diagnosis from it, which exacerbates my IBS and causes cramp & nausea & bloating attacks. Supposedly increasing fats and decreasing sugars/starches will help, but I can't subsist on that diet. The Neomycin and Xifaxan combo I get prescribed helps tremendously (antibiotics that stay in the intestines not the entire system), but I have seemed to need it on the clock every 4 months. Doctor has been ok with that frequency so far (three times now). Some people have trouble with the Xifaxan cost but I'm lucky my insurance will cover the two weeks of it for a reasonable enough co-pay. The test is a huge pain but I only had to do it the one time and my doc relied on my symptom changes after that.

My doctors have said they have no new ideas for meds for me but I came up with a list on my own I'll run by them (with research). I'm not the pushy type but if they get stumped (and I've already been through a few rounds of docs before them that were too), I will gladly mention some things. It depends on the doc how receptive they are to look over some research. I have done the typical ones by far though, but there are some more bizarre ones I read about on the forums. Good luck!

[suede]

Di and others

So good to see so many familiar names..

Haven't we all had a lot going on !!

As everyone I am going through many health issues besides my spinal and nerve damage. I guess I shouldn't complain I have been fairly stable for some time so I guess it was time for a shake up and another rollar coaster ride..

I'm sorry to say I have not been able to read the threads and replies as I would love to but I am having a lot of trouble concentrating and trying to find the words right now .

Please know though that there are just so many of you on here that are in my thoughts and prayers and even when I don't post you are all a part of my heart.

Love,
Linda

[Smiling Angel]

Hi all, good idea, Diandra!! As most of you know my story, I won't go through it all again. The most significant things in my life at present are that I had my Psych Eval for Disability yesterday (all thoroughly explained in my thread about going from adjudicator to claimant) and that my husband is finally home from the hospital, and we are working on a new med regimen. He still has a long way to go, so I am, more often or not, his 'caretaker', for lack of a better term.

Hubby is off at his Partial Day Program today, so I have the day to myself, and I'm LOVING it :o .

See you guys around the forum !!