Home Sweet Home

Discussion in 'Fibromyalgia Main Forum' started by JolieLuLu, Jan 28, 2007.

  1. JolieLuLu

    JolieLuLu New Member

    I survived our move with just a few bumps in the road.

    I havent crashed and burned. I am pacing and supporting my adrenals religiously!

    Of course, I expect "adjustment" for my Kiddos to be difficult this week. The exciting part is over, sort of.

    Ill post soon:)

    jolie
  2. pw7575

    pw7575 New Member

    I am glad you are pacing and doing adrenal support. Man I wish I had this board to tell me that 5 months ago. When I moved I had NO CLUE how much of a toll it was going to take on me. It was very bad. I think this down phase I have been in since my move is because of the move.

    Anyways, glad that you were smart about it. I will take your route next time I have to move.

    Keep pacing yourself and congrats on the move!

    Take Care,
    Pam


    [This Message was Edited on 01/28/2007]
  3. Slayadragon

    Slayadragon New Member

    I was afraid that the move would be dreadfully hard for you (it certainly would be for me) and am very glad to know that you've made it intact.

    Good to hear from you. :)

  4. JolieLuLu

    JolieLuLu New Member

    I havent been following the board for at least a week-,Ill try to catch up when im resting.

    I am simply amazed with adrenal support! I dont know why the FFC didnt take my adrenal fatigue more seriously. (probably the hypertensive crisis made them quite concerned.)

    Albeit, I take tiny amounts of cortisol and herbal adrenal support mixed in applesauce every 2 hours starting first thing in the morning. The total dose is 5 mg. of cortisol daily.

    I do not like the speedy feeling when taking too much adrenal stuff. I will bump up as tolerated. Adrenal recovery can take several months, or more. I have to be patient!

    For now, it is FOCUS on the ADRENALS:)

    My Hub has been extremely helpful! He is off work for another 10 days until he starts back to work. Honestly, I havent done much more than I normally do at home. The move was successful because I had a moving army, of sorts.

    But, that's ok-at least I am beginning to understand that I am really sick and it is up to me to focus on remission.

    I hope everyone is doing ok~

    Love and light,
    jolie
  5. Slayadragon

    Slayadragon New Member

    Realizing that taking care of your health is the most important thing that you can do is a very big step. I tend to forget it way too often myself.

    I'm glad that you feel like your adrenals are getting back in shape. They're certainly a key factor that way too many people with this disease ignore.

    I'm really glad to hear you've gotten to your new home and are getting settled in. It sounds like that will be a good thing for you!

  6. Forebearance

    Forebearance Member

    It's nice to hear from you! I'm glad you survived your move so well.

    Love,
    Forebearance
  7. JolieLuLu

    JolieLuLu New Member

    I over did it yesterday---I went out for lunch with my family. It felt so good to feel "normal"

    After lunch we went shopping at Target for an hour and then I wanted to go to a linens store (stuff for the new house) I knew I was pushing it, but I did it.

    When I got home my legs were aching and my feet were burning. I went to bed for the rest of the evening.

    This morning, I was extremely tired probably at a level 2.
    I rested most of the day and around 3pm, I woke up feeling a bit better.

    My adrenals are obviously fragile. I need to honor this level so that I can make some progress. No more pushing it!

    Being in a new enviroment seems to lift my spirits a bit. Maybe, a new enviroment will help with some progress towards better health!

    Love and light,
    jolie
  8. Slayadragon

    Slayadragon New Member

    I'm really happy to hear that you're feeling comfortable in your new house.

    Also, going out once in a while is good for the spirits even if it does cause one to have to spend some extra time resting to make up for it. Not doing anything fun _ever_ is a pretty grim existence.

    By the way, did you get your food allergy panel back? I think mine is at the doctor's, but I'm debating whether I want to pay for a phone consult to get the results or just wait until early March when I go to see him.

    It would be interesting to hear how yours turned out, anyway.

    Best, Lisa
  9. Forebearance

    Forebearance Member

    I'm glad you got to have a fun day, too, even though you paid for it later. I agree that it is good for morale to get out of the house once in a while.

    I am so glad you like your new situation and house.

    Love,
    Forebearance
  10. JolieLuLu

    JolieLuLu New Member

    I held up longer than I thought!

    Today is a "in-bed day"

    I hope to cath up on some threads/posts.

    Thanks to everyone for your well wishes:)

    Love and light,
    jolie
  11. NyroFan

    NyroFan New Member

    jolie:

    I am so glad the move went well. Like you said, the hardest part is over.

    Luckily you have not crashed and burned. Like you said: pacing in important.

    nyrofan
  12. bigmama2

    bigmama2 New Member

    you and i are going thru some similar stuff w the adrenals! i loved the way you said it is "amazing". and having moments of feeling "normal". and then overdoing it and crashing.

    girl, i totally relate!!!

    question for ya-- are you having times of feeling sooo much better that it is hard for your brain to comprehend? I am. i have been tired for so many years that now when I am not tired it is wonderful AND confusing. does that make any sense?????? it;s like my world has been turned upside down (in a good way!) but it is still kinda unsettleing. it's like i almost don't know what to make of this. (but don't get me wrong I love it)

    please answer!

    and congrats on your new home!!!

    bigmama2
  13. cherylsue

    cherylsue Member

    I've been thinking of your and wondering how you survived the move. I hope this new home will have happier memories of healing and recovery.

    Take it easy and rest some. I hope you find a knowledgeable CFS doctor in your area. After your experience with the FFC, I'm pretty skeptical of them.

    So the adrenal support is really helping you? I just had a cortisol/DHEA test done earlier this week, but will have to wait until my doc returns from vacation to get the results.

    What supplement and brand are you taking to support your adrenals? Is it glandular? I think I might be interested in going this route, too. I'm sooo tired and crash easily, emotionally and physically.

    Thanks.

    Hugs,
    CherylSue
    [This Message was Edited on 02/02/2007]
  14. JolieLuLu

    JolieLuLu New Member

    Using your test results will be the best way to treat your exhausted Adrenal glands.

    Since you are predisposed to hypertension, you must be sure to monitor your BP.

    I currently take Cortisol that the FFC gave to me and I was taking an herbal supplement from the teitlebaum protocol called Herbal Adrenergize.

    Interesting, I ran out of this supplement during the move and I am now just taking the cortisol and I feel less "speedy". Feeling that way so uncomfortable for me. I wont be taking the herbal stuff anymore and will try the glandulars.

    Im going to order the glandulars from pure encapsulations. I got the catalog because I am a nurse. I had to give my Lic # to register. If i can help anyone out with getting a reduced rate for the product I will. Just let me know and we can meet up in chat to exchange emails and go from there.

    Do you have Teitlebaums book?

    He thinks taking Cortisol in conjuction with glandulars will heal the adrenals quickly. I am also taking 8000 mg of of Vit c and echineachia (sp) as per his protocol. I only take 5 mg of cortisol in divided dose 4x daily. I sprinkle it out of the capsule and put it in applesauce.

    So far my BP is normal. I think I would be so much worse if I didnt begin my adrenal support before my move. I am crashing badly right now. This morning I finally feel a change with increased energy.

    I will let you know when I start the glandulars. Hopefully it will help you decide what product you would like to experiment with.

    I think you and I have to be careful and work slowly with supporting our adrenals because of our BP issues.

    I hope this helped:)

    Love and light,
    jolie
  15. Forebearance

    Forebearance Member

    Hey, Jolie and CherylSue,

    You know, the glandular I was taking (which was made of pure bovine adrenal gland) turned out to be too "speedy" for me.

    I think I need the DHEA, but not the adrenalin. That pill must have had adrenalin in it.

    Forebearance
  16. cherylsue

    cherylsue Member

    Thanks for your response. It certainly is something to ponder. My Nexavir transdermal gel will arrive next week, and I'm anxious to try that.

    I'm dropping Dr. Teitelbaum's protocol. First of all, from the recent CFS conference I got the impression that thyroid meds are very controversial if your testing values are normal. Most CFS docs are very judicious in prescribing this. The cortisol issue is controversial as well. Large doses of Vitamin C over 2,000mgs are not helpful. (I think Dr. Cheney or Dr. DeM said that in an article I read about his protocol)

    Hopefully, when I get the test results from my DHEA and am cortisol tests I will decide what to do from there. Thanks so much for sharing your info and offering to help me. You are so sweet.

    I'm going to follow a version of Dr. Cheney's and Dr. DeMeirlier's protocols or a modified version. Dr. Cheney does not use antivirals. Only Nexavir. He seems very cautious in his approach. He also addresses supplements/treatments in stages. I don't believe in doing the human or bovine growth factors that he used to prescribe. That can be quite risky.

    If I had muscular pain or fibro I would probably go with Dr. T's protocol, but that is not an issue for me. I fit the profile of Group 1 CFS patient that Dr. DeMeirlier describes. I have some type of viral brain infection. Dr. Cheney addresses this as well.

    Heavy metal toxicity is addressed in both of these protocols. The both believe in gentle detoxifying through herbs, supplements, etc. Selenium and chlorella are favorites. I took 3 chlorella tablets the other day and became sick. I later read that 1 a day is sufficient and to go slowly. If you took 2 and became sick, you had metal toxicity.

    I found .25 mg of Clonazepam (klonopin) and .5 mg PureEncapsulations melantonin helpful for me to Finally sleep at night. I look forward to sleeping now. How much klonopin do you take?

    My motto that has helped me get better before is "do no harm." I only took supplements and herbs that made me feel better, not worse. I have spent a small fortune trying so many of these. D-Ribose which helps so many, gives me malaise. I found from watching Cheney's Heart of the Matter DVD, that 1/3 of patients can not properly digest this sugar, and it becomes toxic to them.

    What is so wonderful and helpful to many, may not be the right thing for you. It's all trial and error. It upsets me terribly to hear of the suffering you and Lisa went/are going though on the strong antivirals.

    The only natural antivirals that have helped me are ProBoost, Sambucol, and OLE (to a lesser extent.) I'm hearing good things about tumeric and have added that to my supplement list.

    Synthroid is a steriod. So is cortisol, I believe. These will rev you up, but you need to treat the infection first. False energy may not be a good thing in the long run.

    Jolie, these are my opinions. I've researched the CFS docs to see what they are doing. The FFC's are a wonderful concept, great marketing, and Dr. Teitelbaum, a compassionate doctor. However, I want more than that. I want to get to the cause and real treatment. I don't want to treat the symptoms. I want to fix my defective system. For that, I have to go beyond Dr. T.

    I hope you understand I don't mean to undermine your efforts. You have been a delight on this board. Your caring and compassion are so comforting to me and others. I am just at this place in my journey with CFS to shed some of my preconceived ideas and look into some other treatment protocols. I used to lie awake at night pondering what my next move should be. I think I should leave this to God and the CFS experts.

    My prayers for our recoveries.

    Hugs,
    CherylSue