Article: Corinne at Dr. Peterson #5: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

Article: Corinne at Dr. Peterson: TARDINESS, SURPRISES, FLEXIBILITY AND ATTITUDE

You can view the page at http://forums.phoenixrising.me/content.php?511-Corinne-at-Dr.-Peterson-CFS-MECFS-Treatment-Tardiness-FFlexibility-Attitude

 

Yes, I am allowed to give more (in fact they would love for me to) but will not do it without support...need someone there to 'caregive' for 48 hours and so far I haven't found anyone dependable enough :-(

I'm glad you'll the opportunity to contribute more of your vital bodily fluids. I remember my only spinal tap very well....:In bed::In bed: and I hope you can find someone you can count on. As a friend I promise you I'll keep my eyes open.

 

Being "so Corinne" is a good thing...at first it came out of desperation...being bedridden and needing a plan..something...anything. But now it's based on new found confidence... You know...that "moth emerging for the cocoon" thing It feels good to feel brave and strong for the first time in 20+ years...that's what DrP and my FFL have given me
Yes, I've gained 7-8 pounds in the last year...it's noticeable. Something I haven't been able to do for 20 years.

That's alot of weight - an amazing turnaround after 20 years of...hmm....how to put this - a really lean look. It certainly suggests that your basic body physiology is changing. The fact that you were able to tolerate the exercise stress test was a huge indicator of how far you've come. All very promising signs and hopefully more to come.

 

Dr. Peterson said your 'attitude' was important and one of the things he referred to is that you actually did EVERYTHING he suggested. I imagine there's more to it than that though. My experience of you is that despite your numerous physical problems you've managed to maintain a pretty high level of mental well-being. Is there anything you specifically do to do that? Do you work on that?

 

Being "so Corinne" is a good thing...at first it came out of desperation...being bedridden and needing a plan..something...anything. But now it's based on new found confidence... You know...that "moth emerging for the cocoon" thing It feels good to feel brave and strong for the first time in 20+ years...that's what DrP and my FFL have given me
Yes, I've gained 7-8 pounds in the last year...it's noticeable. Something I haven't been able to do for 20 years.

Your transformation has been amazing. I'm so glad you are feeling brave and strong after so many years of being SO ill and bedridden. Keep running with it!

 

Dr. Peterson said your 'attitude' was important and one of the things he referred to is that you actually did EVERYTHING he suggested. I imagine there's more to it than that though. My experience of you is that despite your numerous physical problems you've managed to maintain a pretty high level of mental well-being. Is there anything you specifically do to do that? Do you work on that?

It's all about laugh therapy, right Corinne?

Seriously, Corinne does have the best attitude, and she is HIGHLY self-motivated, but I believe she was this way before she got sick and has somehow managed to hang onto these traits.

 

It's all about faith and laughter. Even when I feel bad I try to give thanks for my many blessings and to laugh. The turning point was one of the trips I made with a friend to see DrP... I never stopped laughing the entire time...I thought I was going to die. I thought..."this is going to wear me out", but instead it made me more confident and my sense of well-being was amazingly uplifted. The most important thing is I start each day giving thanks to the many blessing in my life. I have awesome friends and family who support me in my journey...and the ones who make me laugh, who are postitive and fun to be around ,are my most precious. I spent 20 years feeling like an imposition to others.... NO MORE....I now realize my value! It sure helps to have a doctor ( and friends) who instills that in you.

 

It's all about faith and laughter. Even when I feel bad I try to give thanks for my many blessings and to laugh. The turning point was one of the trips I made with a friend to see DrP... I never stopped laughing the entire time...I thought I was going to die. I thought..."this is going to wear me out", but instead it made me more confident and my sense of well-being was amazingly uplifted. The most important thing is I start each day giving thanks to the many blessing in my life. I have awesome friends and family who support me in my journey...and the ones who make me laugh, who are postitive and fun to be around ,are my most precious. I spent 20 years feeling like an imposition to others.... NO MORE....I now realize my value! It sure helps to have a doctor ( and friends) who instills that in you.

That's great to hear -it sounds like kind of a concerted effort - an effort to give thanks for your blessings and laughing.......I actually do that - I look for things to be thankful for. I look for blessings where I didn't look before...I guess you would say the difference for me is that I look for things to be grateful for whereas before I got so immersed in all the (many, many) problems that I forgot to look. It takes some work to actually look - but it definitely helps.

If our 'relax and digest' system (parasympathetic nervous system) is turned down and the fight/flight system is amped up (as mine surely is) turning on the relaxation, good feeling, etc response - is probably a good thing.

Quite frankly, I'm amazed at how lucid (yes, Corinne - lucid), grounded and upbeat Corinne is. Given how ill she's been I expected something different - but while she has to rest an interminable amount (beddy-bye at 5pm ) when she's up she's very vital. She just can't do alot of physical activity.

 

Hi Corinne, First a quick, Thanks SO much for your energy and blogging

Second, I am curious about your blood being sent to Miami:If you had to choose (for financial reasons) for the first time between Dr. Klimas, Bateman, and your beloved Dr. P-- who would you choose? (or I should say, recommend for someone who is younger than you but perhaps has similar med profile?) I realize these are all wonderful doctors (for a number of reasons)-- and, if you'd prefer not to answer this q publicly, might you send me a private message? (i am linking the bloodwork being sent to miami, wondering if choosing miami doc first is rec'd)?

Third and last question: Would any of these docs recommend or can do the blood volume test (or a blood volume test of any kind)? I assume ANS testing (for POTS/NMH) doesn't mean the same thing (although these issues overlap).

Thanks so much! Blessings for your continued improvement (and laughing!!) Htree

 

Hi Corinne, First a quick, Thanks SO much for your energy and blogging

Second, I am curious about your blood being sent to Miami:If you had to choose (for financial reasons) for the first time between Dr. Klimas, Bateman, and your beloved Dr. P-- who would you choose? (or I should say, recommend for someone who is younger than you but perhaps has similar med profile?) I realize these are all wonderful doctors (for a number of reasons)-- and, if you'd prefer not to answer this q publicly, might you send me a private message? (i am linking the bloodwork being sent to miami, wondering if choosing miami doc first is rec'd)?

Third and last question: Would any of these docs recommend or can do the blood volume test (or a blood volume test of any kind)? I assume ANS testing (for POTS/NMH) doesn't mean the same thing (although these issues overlap).

Thanks so much! Blessings for your continued improvement (and laughing!!) Htree

Hi! and thanks for the kudos...yes, this takes energy but it is quite rewarding.
Dr P is the one who sends the bloodwork to the Univ of Miami for the cytokine panel. He told us (Cort and I in May) that Klimas does the best cytokine panel. He sent it there again in Nov when i was there. Now that she has moved, however, I'm not sure where it will go next time. As for choosing a doc...right now I feel I have the best one in the world!!, however Dr P is the only one I have any experience with and he is the closest to me. I have much admiration for the others and would probably have seeked out Klimas had I lived back east. I did look into Bateman before I was accepted as a patient of Dr P's but she wasn't accepting new patients at that time. I'm very happy and feel very blessed as a patient of this very dedicated man. I like his "old school" philosophy...paper files, simple and basic ways of doing things, etc, etc....in many ways I feel we are sort of "kindred spirits"...I'm pretty much the same way.
As for the LBV test....I'm not sure if Dr P would have requested it as I already had it done before I saw him. Like I said, it's quite simple..you basically get to sleep in a recliner for two or more hours why they draw blood, tag it, put it back, then remove it from the other arm a couple of hours later. The POTS test is different and while I never did the tilt test, Dr P diagnosed me with POTS after my 24 hr BP/HR monitor showed such wide fluctuations and abnormalities.

Hope that helps.....and keep laughing! My next blog is done and when it comes out I will be requesting more quetions for the doctor..so feel free to submit them

 

That's great to hear -it sounds like kind of a concerted effort - an effort to give thanks for your blessings and laughing.......I actually do that - I look for things to be thankful for. I look for blessings where I didn't look before...I guess you would say the difference for me is that I look for things to be grateful for whereas before I got so immersed in all the (many, many) problems that I forgot to look. It takes some work to actually look - but it definitely helps.

If our 'relax and digest' system (parasympathetic nervous system) is turned down and the fight/flight system is amped up (as mine surely is) turning on the relaxation, good feeling, etc response - is probably a good thing.

Quite frankly, I'm amazed at how lucid (yes, Corinne - lucid), grounded and upbeat Corinne is. Given how ill she's been I expected something different - but while she has to rest an interminable amount (beddy-bye at 5pm ) when she's up she's very vital. She just can't do alot of physical activity.

Sounds like we have a few things in common
Seriously, I think the two are automatically connected...if you focus on the good things, like you said you do, the laughing is a natural result. How can you focus on your blessings and be depressed or miserable at the same time? It's all about an attitude of gratitude! I too have stopped focusing on the negatives in my life....and that is something I just started doing about two years ago...yes, it took that long ! :Retro smile: It's easy now to say...'what in the world took me so long?" but I think I had to 'walk" the entire journey step-by-step, before I got it. I tried meditation and all that relaxation stuff, but it only lowered my BP more :Retro smile:...I'm normally what Dr. Bell called the "wired and frazzled" type, but now I use that "energy"... be it fake energy (aka adrenaline or whatever) to laugh and be upbeat in a positive, fun way. Like everyone else out there, I have missed out on a lot and that became my focus for the first many years. Now I focus on what I CAN do, not on what I can't. for instance,...yes, I go to bed around 5 pm(thanks for telling the world, Cort ) but I can and love to get up at 5 AM!!!!:cheeky grin: And with a 30% improvement I plan on adding more things to the CAN list :Retro smile:

 

Help for my bedridden husband

Hi Corrine,

Thank you so much for sharing your experiences with Dr. Dan Peterson. I've been trying to find someone who can treat my very sick, disabled and bedridden husband for many years now. He has been totally disabled ever since 1989, and has suffered beyond belief for nearly 30 years with Severe ME/CFS, Fibromyalgia, Myofacial Pain Syndrome and other things (which has left him 99% bedridden). This past week, he had five days straight of sleeping 23 hours a day or more every day, because he couldn't stay awake for any more than a few minutes at a time. It was very scary and we thought we were losing him. This isn't the first time this has happened to him. So we need HELP desperately, and are asking you to email me at sandyjean2@live.com so we can get some information on Dr Peterson, and look into seeing him. Dr Peterson seems to be the only qualified physician anywhere nearby who isn't all the way across the country, and we need to try to get my husband treated by him, before we lose him. He's only 54, and has been extremely ill ever since his mid 20's. Thanks Corrine, I look forward to hearing from you soon.

 

Sandy

I have responded to your inquiry by private messaging...check at the top of this page where you log in and you can click on "notification"...it should say you have one unread message. If not....click on my name and it will give you the opportunity to contact me by private message. I hope I haven't confused you. My prayers go out to you and your husband. I'm not sure what I can do but I will gladly answer any questions you might have. If you can't retrieve your private message, I will try and answer them here in the comment section.

Best Wishes
corinne

 

Sandy, it just breaks my heart to hear of anyone being bed bound severely ill with this brutal disease, especially for so many years like that. Your husband has to be one very courageous soul and, you must be one very loving and dedicated partner.

Dr Peterson is a most wonderful person, and the very best you can have for this disease. He's my doc too. I also sent you a PM.

 

Bringing this up for IVANA to see, she was wanting to get in touch with Corinne