Another Update

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me for 60 days, which should be plenty of time for things to finish playing out. So I do have care once again, and words can’t express how much I owe my doctor. No matter how many doors were slammed in his face while trying to get me appropriate care at home, he never gave up, never walked away like so many doctors do. He is an incredibly rare find, and I am blessed to have him overseeing my care.

Second, regarding the medical side of things. My doctor has me on subcutaneous Dilaudid, which is working pretty well for my pain, and finally stopping those horrendous 10s. My bowels have quit working on their own (the nurses can’t hear any bowel sounds whatsoever), so every third day we force them using a suppository or two. So far that’s working out okay. For a week or two I had heavy bleeding out of my private area – the cause of which is unknown since I experienced menopause nearly two years ago, and the symptoms didn’t fit menstruation anyway. It seems to be letting up somewhat now, but the whole thing is still a mystery. I am extremely fatigued and have difficulty staying awake most of the time. I also experience mental confusion, slurring of speech, extreme muscle weakness, lack of fine motor control, and other such symptoms more severely and frequently than I did before. And of course I’m still losing weight.

Recently, my body has begun refusing all liquids. It’s like the food fiasco all over again, but with liquids this time. Everything I try to drink comes back up. I am vomiting many, many times a day. I have tried many natural and prescription “cures” for nausea, without success. The one thing I have found I can sometimes keep a tiny bit down of is Red Raspberry Leaf Tea, although I still vomit that up more often than not. I have not given up the battle for fluids yet, as I’d rather not die of dehydration if it can be helped. There are other things happening in my body which will kill me soon enough without adding dehydration to the table. Recent blood work has shown the biggest contender at the moment to be dangerously low potassium levels. The levels I am experiencing are fatal if not treated, and I have chosen not to treat them. The low potassium is almost certainly a result of both lack of nutrition entering the body and frequent vomiting, and thus is simply one more part of the disease process I am allowing to play out. As time is now so limited, my husband has taken advantage of a federal law (the Family and Medical Leave Act) in order to stay home with me full time until the end. This has been not only a tremendous help, but a real necessity as things have progressed.

Looking forward, there are several more posts I felt strongly about writing. I do not think that they can happen at this point. This may well be my last post, although as I’ve said, my mother has the login details for this site and has promised to post an update once I’m gone. She is also fully qualified to answer any questions you may have for her at that time, and has promised to do so as time and circumstances permit. I just wanted to say how very much I appreciate all of you. The fact that you all have been so supportive, both in your comments and in sharing my posts around the web, means more to me than you will ever know. The ME community may be very ill, but we are also very strong. Thank you for showing and sharing that strength with me. God bless.

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29 thoughts on “Another Update

  1. Dear Brooke,
    Thank you for writing to us again. Thank you for your bravery and concern for the ME community.
    We love you!!!

  2. many, many thanks for posting one last time, I am awed that you are willing to share your pain and bravery with us all. As a mother of a daughter getting increasingly ill with M.E. your blog has helped so much and I cannot thank you enough.
    My hope for you is that your last days are as peaceful and pain free as possible and I hope you can feel the love that is coming to from so many people who know you through your blog. I am glad you and your family are getting some support through this period.

  3. I have fully enjoyed your friendship and have learned so much from you over the years I’ve known you. When you are finally at peace make sure you find my SD Lola who is at the bridge. She will keep you company, give her plenty of love for me!

    Love now and forever!
    Lauren and SD Waylon

  4. Brooke, you are an amazing human being with a huge heart. Your capacity for strength beyond your body is astounding. I send warm and peaceful thoughts your way.

  5. I’m so happy to hear you are receiving the medical support you deserve. I cannot imagine how much it took out of you to write this — thank you.

  6. Dear Brooke,

    I’m sorry to read that it’s your time to go.
    I understand though and I think it’s brave of you. It’s the way I want to go too when it’s my time and when I have the courage to do so.
    Soon it will all be over and you can finally rest without any pain and other suffering. I just hope you don’t have to suffer too much before that. I wish you, your husband and your mom all the strength you need.

    Many soft hugs,
    Ingeborg (sorry, I wasn’t able to react sooner)

    • Hello Brooke I’m new to FB and you story has choked me and has lefte utterly stunned! May God Bless you and Keep you In the comfort of His love and His understanding of your suffering! HUGS

  7. Have you tried medical marijuana for the nausea/vomiting? Different ways to get it into the body and
    it works when most medicines fail for severe nausea. Vaporizing works well. Not trying to change your mind, just trying to find a way to help ease your suffering.

  8. Thank you so much for using your last breath to help raise so much awareness, may the light guide you to the most amazing peace and serenity and all mine and my family’s love and blessings are with you and yours at this timexx

  9. Thank you for sharing this process with us and for raising awareness of how this awful illness can be. Just wanted you to know that I will be praying for you and your family and my thoughts are with you xx

  10. So many of us are thinking of you and your family Brooke. With love and gratitude at your willingness to be open about what is happening. We love you.

  11. Sending you loving light and Angels. I wish there was more I could do, but as an ME sufferer, I know there is not. My heart is hevey for you and your family. God bless your Doctor for fighting for you. Much love xoxo

  12. Love, light & prayers for you and your family Brooke. I’m newly aware of your blog, arrived via a Facebook post from Greg & Linda Crowhurst’s Stonebird UK or Holy Way blog I think. Thank you for documenting everything so succinctly despite the obvious suffering & spoons toll. This is what the world needs to know about ME and final stage severe ME. I’m a UK/Australian veteran of over 30 years with chronic moderate to severe relapse/remitting ME (with brain lesions caused by it) and have run into repeated brick walls from the medical professionals – absolutely no help, not even basic human kindness which includes family & friends. I despair over this illness, the blatant abuse & denial MEites are subjected to, the medical & political downplays and have lost many cyber friends to it along the way. Holding you in my heart, brave one. Enough is enough. May you know peace & freedom from pain. With respect & love, Pixi.

  13. I am speechless. I have only just come by your blog but I can see that you are simply an amazing soul, and I wish you all the love and light, in this world and the next, to carry you through to your resting place of peace and endless joy. I feel blessed to have found you and read some of this long journey you have been through, thank you for sharing it with us all.
    You’ll soon be free, go fly high and free with the wind my friend xox

  14. Dear Brooke and her loved ones, not sure if anyone has the time or energy to respond, but I am thinking of you all. I am a recent reader and have followed these last 4or 5 posts. I do hope when the time is right you will let us all know how it is.

  15. My heart goes out to you and your family. I have also got a daughter with severe M.E, I pray one day that M.E is recognised for the disease it is.! lots of love brave one xxxx

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