An update I have been trying to get out for months.😊 May of last year the specialists Guinevere was working with said the best we could do for her was provide comfort care, therapy and counselors to help her learn to live with being chronically ill. Myalgic Encephalomyelitis is difficult to live with.
At that point she was very unwell, therapies were not possible, her brain could not handle stimulation, crawling to the bathroom, otherwise using her wheelchair, even eating had become difficult for her. The amount of pain she lived in, was disabling, so much inflammation in her body.
She seemed to be fading away, nothing any of the doctors tried helped, she was often confused and completely disabled by her symptoms. Nothing reversed her worsening symptoms.
Some of her symptoms baffled them. Over several years, So many Doctors, so many tests, trips to the hospital, weekly IV’s…constantly fatigued and exhausted, she would cry and beg me to stop trying to help her, she would weep and ask me to pray that Jesus would take her to be with Him.
In May of last year the Lord directed us to new doctors, and then more testing, and a new neurologist in July. These doctors believe there is still a path forward for her and a better quality of life.
They found things that other doctors didn’t, and over the last year, her health has turned from a continual downward slide, to some of her symptoms drastically improving. The last year has been up and down, two steps forward, one step backwards.
She rarely needs a wheelchair, seizures are less often, she can hold a conversation, interact with the family again, she has been able to knit, on better days she can read and write a little…being able to work with her hands has been such a blessing.
Peter and Evelyn are delighted to be able to talk to her again, Savanna simply doesn’t remember Guinevere “not being in bed all the time” and would squeal with delight when Guinevere would appear out of her bedroom. ♥️
Most of Guinevere’s days are still in bed, she is able to walk in the evening with us, when the sun is setting…or in the early morning.
Once in awhile she has been able to join us on an outing, which is exhausting but wonderful for her and us!
Learning to navigate life with ME and her chronic sickness is challenging, but the symptoms that were totally disabling her, have improved and continue to improve.
Darkness, quiet, a slow life are important as we are learning how quickly she crashes, when she has exertion, stress will quickly bring her down, for weeks at this point.
We are thankful for the doctors and doors the Lord has opened.
She has dealt with chronic lymes disease and other autoimmune since she was 9… but in June it was 3 years since her health deteriorated so quickly.
The Lord has been faithful through some very dark days, we know He will continue to show us the path forward, navigating the ups and downs and what is best for her.
Our prayer for her is Eph 3:18-19 “and may you be able to feel and understand, as all God’s children should, how long, how wide, how deep, and how high his love really is; and to experience this love for yourselves, though it is so great that you will never see the end of it or fully know or understand it. And so at last you will be filled up with God himself.”
She is physically, mentally and emotionally fragile, but thankful to be where she is today. The spiraling down is difficult for her, but she is learning to accept it as part of the process.
The neurologist is starting her on a new IV treatment this week, hoping for positive results. If not he said we will keep trying, there are other options.
We are thankful for patient and persistent doctors, who stepped up when others gave up. (We are thankful for every doctor in her life, there have been many, and each had a purpose.
“Oh, what a wonderful God we have! How great are his wisdom and knowledge and riches! How impossible it is for us to understand his decisions and his methods!”
“ For who among us can know the mind of the Lord? Who knows enough to be his counselor and guide? And who could ever offer to the Lord enough to induce him to act? For everything comes from God alone. Everything lives by his power, and everything is for his glory. To him be glory evermore.” TLB
Roman’s 11:32
Our Journey 
Oh Jenny, I am SO GLAD to hear about Guinevere’s turning point. Praise God for this new doctor!! I will pray the IV treatment brings even more healing! Thank you for the update.
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