Dear friends and family,
It's been difficult to respond properly to all the lovely expressions of concern for Molly. Here at least is an e-mail newsletter that I hope will help.
As most of you know, Molly began 4 years ago having increasingly debilitating symptoms. She particularly began worsening in February. It was only in September that the tests definitely confirmed Lyme disease. (It's very tricky that way.) She had probably contracted it 20 or more years ago living in the northeast, and it had gone underground for a long time. Lyme is especially difficult to treat in chronic cases like this.
We are fortunate to have excellent doctors on board, Dr. Russ Canfield here in Santa Fe, and Dr. Murray Susser in Scottsdale (succeeding Dr. Dan Kinderlehrer, who has moved away from this area and is curtailing his practice because of his own continuing Lyme symptoms). Dr. Susser has had 40 years (!) experience with Lyme, starting in California well before the disease was named.
Molly's Lyme has recently especially attacked her central nervous system, causing sensitivities to sound and talking (hyperacusis), light and touch, resulting in headaches and stress throughout the body. Additionally, she has developed chemical and environmental sensitivities. She cannot exert herself much, especially to use her arms for more than very light tasks, without triggering weakness and stress response. She doesn't use her computer very often, but she can operate the keyboard--she does a little bit with her feet!!
Other symptoms include pain and swelling in the knees and other joints ("classic" symptoms of Lyme), so she scoots around the house on a wheeled stool. She is quite house-bound, and as a consequence of these symptoms, she has few activities to engage her and little or no means of distraction! Especially because of the sound sensitivity, she needs to minimize her interactions, so she gets to feeling a little isolated, despite all the incredible support she feels and receives from loved ones!
Molly's sister Laura was here with us in September to see Molly, confer and do (ongoing) research with Frank and me. The contact with Dr. Susser came out of this research, and Laura has taken part in our two long phone conferences with him.Frank and I and friends are helping Molly get ready for winter, since she feels the cold so much these days. She has someone with her for a period everyday. We are very fortunate to have many wonderful friends, neighbors and helpers, some of them contributing from afar.
Molly has ups and downs. Some days she feels pretty bad. She has had setbacks because of her sensitivities. Recently, for instance, we thought the nutritional IVs were working, but then after a few of those, she began having extreme reactions.
Now she is about to start on a different kind of IV, this one for hydrogen peroxide, which Dr. Susser has had a lot of success with. The idea is to start small and increase it, and then add other supplements, in order to work on the sensitivities and gently begin to chip away at the spirochetes (the Lyme bacteria, wily little bastards).
Although Molly has an excellent appetite most of the time, and she is eating a very healthy diet (tending toward alkalinity to combat the acid environment of the Lyme spirochetes), her body weight is low due to malabsorption.
She isn't ready to make the trip to see Dr. Susser in Scottsdale yet, because the trip itself will be very hard for her. But Dr. Susser (as well as Dr. Canfield) recognizes that problem and is being very helpful by phone.
Fondest wishes to you,
Marilyn
Posts
Thank you for creating this wonderful forum. And thank you for bringing closer those of us who live far away. Please know that the spirits of Lee, Catherine and Isabella have joined forces with yours to defeat those pirochetes.
ReplyDeletetk u soooo much. touches my heart. xxooxx
ReplyDeleteMay the road rise to meet you,
ReplyDeletemay the wind be always at your back,
may the sun shine warm upon your face,
and the rains fall soft upon your fields and,
until we meet again,
may God hold you in the palm of His hand.
May love and laughter light your days,
and warm your heart and home.
May good and faithful friends be yours,
wherever you may roam.
May peace and plenty bless your world
with joy that long endures.
May all life's passing seasons
bring the best to you and yours!
Especially for you: Irish Blessing http://tinyurl.com/dhgrje
and other St. Patrick’s Day stuff http://tinyurl.com/cmv62y
mmm tk u, b
ReplyDeleteIt is a beautiful photograph of you. I'll ask Emily Anne to critique your parents' charming drawings!
ReplyDeleteI just wanted you to know that I am thinking of your, betting on you and against the baddy bugs.
Much love from London. I logged on to that facebook thing. I'll send you further news on the email.
s
Hi Molly, Here's the letter I sent via email and it's without the hawk photo. Let me know when or how I can blog photos and I'll send more, but in the meantime, I will email you a photo of George and myself.
ReplyDeleteWe're heading off for Denver tomorrow and will be away for a week. Have a good time watching all the birds with their spring breeding colors. Our finches are bright red and the blue birds are wonderful!
Do you have any breeding couples near you?
Dear Molly,
I hope to visit you off and on just to say hello and tell you that George and I are thinking of you. You should know that we admire your courage, your positive attitude and your determination to fight the terrible illness that has had you homebound for ages now. I am attaching a photo that I took at the Desert Museum in Tucson. I sent it to my granddaughter when she was in high school and at a low point in her life. Maybe it will give you a lift?

What fierce determination and strength! I feel his power! We feed many birds here at our house and belong to the Cornell Univ. Backyard bird Count. Each month we count how many and what types come to our many feeders during a two day period. And, naturally, it’s a fine place for several hawks to hunt! We try to rationalize and accept this knowing it’s nature but I do object when he hides in our little pond and just waits so I scare him off. I’ve taken a photo of a Coopers Hawk from my kitchen window and he also has this same intensity.
I know we have met you at your folks house but it was years ago. Next time I check in I will send you a photo of us with our two doggies.
I hope that you will be strong enough to make that trip to Tucson(?) and will watch your blog to keep in touch,
With love, Carol and George Price
Great to see all these lovely messages to Molly, including Carol and George!
ReplyDeleteLove to all, Marilyn
http://www.lymecryme.com/
ReplyDeleteDear Molly,
ReplyDeleteTrees have always been important to me, too. In our back yard at 39 1/2 Street in Austin, Texas, where I first met your mother, we had a banana tree and a fig tree. I took them for granted, not knowing we would have no fruit-bearing trees in Syracuse! (Your father brought your mother to meet us there when they were newly engaged. They were sooooo cute!)Our pecan tree was particularly important to Marian and me because we went out to gather pecans with Papa; it was a way to spend time with our idol. Then later in Syracuse, we climbed all the trees in our yard on Comstock Avenue, and we built treehouses in three of them. I remember being the proverbial tree-hugger when I was around 11, going out at night so full of amorphous emotion and just hugging our maple tree and yearning. In our current location I have watched our spruce tree grow to a great height, shading our balcony and providing spruce nuts for the squirrels. I have watched grow four trees I have planted myself: a honey locust, now really tall; a rose of sharon like a fountain in summer; and two spruces. A weathered circle-swing hangs on our nearly-dead rowan tree in the front yard, still beckoning passing children to try it out. Baby squirrels emerge each spring from the center of this valiant tree, which still produces bright orange berries every other year, eaten avidly by cedar waxwings after their curing in the cold of winter.
Molly, my thoughts and prayers are with you as you fight the good fight. If only we could each take a bit of your pain and weakness upon ourselves, distribute it more fairly. Just hold your arms up to the Father and ask Him to hold you as you go through your trial. I love you, dear cousin. Pym
Dear Molly,
ReplyDeleteI've been thinking of you and wondering just things are going. We read your good letter and appreciate the huge effort it must have been to send it. Just one more example of your determination, which must be what will see you through this difficult time.
Our visit in Denver was caught short when the news of a big storm was on the way. We just missed it there but woke up to over 12 inches of snow here on the next day!
I am sending this photo of George and me taken last Nov. to include with our Christmas card. We're all "oldies". Our dogs, Addy and Lilly, are 9 and 10 years old and we're in our 80's. I am teaching them a few tricks. Already, Addy can jump in her bed (a real jump) at command and Lilly is trying to shake hands. She lifts her left front leg up, uncertainly, wondering if that is what I really want her to do.
We are planning to meet your parents for breakfast next Sunday and I will ask them about you and, in the meantime, only if you feel up to it, please let us hear from you. I will post this letter on your blog but have found out that I can't send photos. My daughter thinks you can copy this photo and paste it on. Hope that is possible.
With love and very best wishes for your complete recovery,
Carol and George
Thanks for your note Molly and sorry the treatment is not working. It must be so very disappointing. I know your parents are working the problem and we trust them to keep on fighting along side of you. There just must be something or someone out there that will help.
ReplyDeleteWe were planning breakfast with them tomorrow but George is ill and we had to postpone it. I was going to bring a bear fetish to give to you. My friend from Santa Clara told me that bears are strong and gave me one, which I've been carrying for 20 years now, as a memory of my friend and, just because, and I wanted you to have one as well. Next time we meet, I'll send it to you. I'll tell you more of her if you are interested. She taught me so much during the 40 years we were friends.
Here is a larger photo - 4x6 - with more resolution. It might take awhile to open but you should be able to drag it to your desk top and print it. Let me know if it doesn't work and I'll mail you a copy.
Know that we think of you with love,
Hello Molly,
ReplyDeleteA was sitting thinking about you this afternoon at our usual time and fretting that I had not got around to writing another message on your blog, when I happened upon an idea.
I am not good at the spiritual encouragement message stuff, at least not in a public forum and not endlessly. I figure you know how my heart screams when I think of how those bastard buggies have sapped your skinny bean-pole of a body. But I suspect that, in the battle you have taken on, your spirit can just as much be benefited by a little amusement as by my hopelessly derivative poetry. So, I have decided, instead, to write for you and your blog friends an on-going account of the renovation of Henri Le Magnifique. Consider it an occasional serial, a "blog within a blog", a "sub-blog" or, as I would call it, a "blig" (as in 'log/blog' and 'twig/blig'). Barkis is full-on with this and has readily agreed to be the Chief Technical Editor (as well as to do all the real work, which is how I like it!).
Unfortunately, I can't post photographs on your blog, but you yourself have seen Henri in all his powder blue glory and otherwise and I am happy for you to forward those pictures and future instalments to anyone interested.
Since you already know about the dream, discovery, acquisition and delivery stages and even about the beginning of the great rust removal regime and the dilemma to do with the driver's seat, I'll start with today's developments and fill in the picture afterwards.
We did this very afternoon have an outing to your old haunt, The Pentonville Rubber Company on Pentonville Road. Furthermore, the mission was successful, very successful. However, it was not for foam, your area of expertise, but for rubber products (no twittering, please). You see, after I wrote to you about how instrumental your market research into Foam and the Market for Foam in North London had proved in solving the problem of the perished foam in the driver's seat, we (Barkis, I mean) had a look at the seats of our neighbour’s (Betty's) Deux Chavaux and discovered that they are identical to Henri's. So he ordered seat foam form Citroen. It worked perfectly.
Another challenge soon after presented itself; the metal panels underneath the seats, which, as you will have seen in the photographs, were in a deplorable state, needed to be reattached after being reconditioned and the felt padding that is designed to dampen their vibration during transit, had disintegrated entirely. The need for rubber was apparent. As was the case in our (yours and my) famous foray into Foam and the Market for Foam in North London, I drove the getaway car and skilfully dogged the ubiquitous traffic wardens (poor immigrants all) whilst Barkis made the purchase. It took relatively little time for him to emerge smiling with the following acquisitions: a whole 6 meter length of high density water-proof foam tape with adhesive on one side (for the floor panels); a 6mm thick 25cm square of glossy black strong rubber (to cover the gear shift bar so you don’t get wind and rain up from the road); and a thinner expanse of flexible black rubber for use in fashioning all manner of gaskets and the seals.
And there you have it: the first report on the renovation of our Henri the 1971 Citroen H van. A ‘before and after’ photograph of a floor panel will be on its way to you. Later on, I’ll tell you about my plans for the interior design (I will need your advice on this) and about progress on caravan sites in north eastern France.
By the way, I did get to drive Henri a few weeks ago (obviously before the driver’s seat was removed). Barkis was as nervous as a kitten. Of course I think it is because I am ‘girl’, though he will say it’s because I have a less than pristine driver’s license. Anyway, we went up to the car park at Ally Pally and I soon got the hang of it (only one semi-gear stripping incident). Zooming about I was and, guess what: it drives just like Papa’s old tractor. Big steering wheel, clunky gear shift, hell to break.
Lots of Love, Susie and Barkis
11.04.09
Although I enjoy Molly's blog, I have been debating whether or not to contribute because, well, I just feel uncomfortable expressing my thoughts and feelings. So … I'm going to fight my nature and briefly share with everyone how I came to meet Molly, and why she is one of my closest friends.
ReplyDeleteAlmost five years ago, at a gas station pay phone in Kansas, I called Molly to ask for a favor. We had briefly met more than ten years earlier, and I doubted she would remember me. Thankfully it was a horribly windy day and Molly didn’t notice my quivering voice. I still get nervous when I call her.
That was near the start of Molly’s current difficulties and I didn’t pry, I just enjoyed our afternoon visit over tea. I’ve never tried to explain to Molly how that brief visit influenced my future plans, but it ultimately lead to a sort of personal revelation and my current academic undertaking.
Since then, Molly and I have managed to have some good times and she has become one of my best friends. I yearn to lounge on her sofa, snug under her ill-gotten green security blanket (which I personally believe is a reincarnation my childhood blue blanket). Molly’s peaceful abode is a special place that reflects her gentle nature, and I look forward to visiting soon.
For unknown reasons, there are those individuals who make you feel special and encourage your desirable traits – Molly is that person. I enjoy helping her and love her funny looks due to my failed explanations.
Molly, my thoughts are often of you, and I look forward to a time when we can make new memories. For all the rough times, look forward to the good ones ahead. Get well soon Babe!
Dear Molly,
ReplyDeleteHope this warmer weather is a pleasant change and maybe even better health for you.
It's good to hear that my bear was a hit! I think I have told you that I have carried one with me for years now and was so pleased when your Dad showed me his fetish. For me, it's the thought of my friend, now deceased, at Santa Clara, and her conviction that just holding it in my hand would bring strength. She was a strong woman who sued her own pueblo when they would not give her children full membership in it because she had married a Navajo. That was about 40 years ago. The case went to the Supreme Court in Washington, where she lost, but it was the beginning of sovereignty for all Indian people so, in that sense, she really won.
I met her when I started trading children's clothes for pots. We soon became friends and we gave each other gifts instead of trades. I eventually had quite a collection of pots from her and when we moved to our smaller house I boxed them up and gave them back to her children. I will try and send you a photo that I took at our house right before we moved. I'll need to scan it first as it a 35mm negative but will try and do that this weekend. I was with her when she died and still miss her very much.
George and I are both casualties of our early work at Los Alamos. He was exposed to Beryllium and the Government is paying us to go to a hospital in Denver to have some tests. At present he only has slight breathing problems but he may need treatment if these latest tests show that he now has the disease instead of just a sensitivity. We should get the results this week. I was exposed to carbon tet. while I was pregnant and it affected the growth of our eldest son.
Molly, please don't feel you need to answer my letters. I know, from your parents, that you do enjoy them but I also know how much energy and effort it takes you to write back. Just know we are thinking about you, whether you answer or not.
Love, Carol
Dear Molly,
ReplyDeleteIt has been a couple weeks since I began the Henri ‘blig.’ I figure a second instalment is due, but I hardly know where to begin. So much has happened. It has happened in spite of the rain, which occupied nearly the whole of the first week. As you know, we have no garage (at least not one attached to the house) so, Henri is out there on the corner of the road in front of the house. You will remember it is quite a narrow road. This presents multiple problems. First of all, Barkis couldn’t do much more on the rust removal in the rain. Secondly, when he could get out there, he had to put the ladder on which he was standing (in order to reach the top) on the road side, not the curb side. If any wider than average vehicle driven by an unconfident driver passed, it caused an ‘event.’ Most people were extremely gracious about it, however. Indeed, as you can imagine, Henri is ordinarily a source of amusement and inspires good will.
The third problem about Henri’s being out on the road is that it has made it rather impossible for Barkis to grumble about Fat Pete. That is Barkis’s name for the large Greek Cypriot fellow who lives with is wife, two daughters and two little grandsons, in the house across the way. We can’t figure out how they all fit in that little house, especially as the living room seems to be wholly occupied by a giant television, permanently showing cartoons, and two giant sofas. They do somehow get on with it though, and they are a cheery, if chaotic lot.
Barkis’s complaint is that they have five vehicles between them, including an enormous white van. Pete appears to be what you guys would call a ‘contractor’, working for the local council temporarily fixing up temporary council houses using temporary (Eastern European) workers. The more middleclass amongst the neighbours roll their eyes as Pete’s huge white builder’s van parks in front of their homes, nearly eclipsing all day light . They mutter words like “inappropriate” and “unsightly.” You can imagine, of course, that Barkis is (or was) pretty much the archetype in this respect. So, now that Barkis himself has a ‘van’, albeit plus petite, he is now, in Pete’s view, part of the ‘van man’ fraternity! The ever-friendly Fat Pete sauntered right over to Barkis when he first identified him as Henri’s owner and practically slapped him on the back. They even discussed the relative merits of different styles of wing mirrors. Naturally, this development has rather destroyed Barkis’ ability to complain about Pete’s family’s parking profligacy.
The parts of Henri that are not on the corner are in our kitchen/garden room. For the whole week, the long table has been a workshop for various bits of engine and dashboard that require renovation. The smell of enamel paint wafts up the stairs, competing with the less welcome usual smells produced by our unreasonable number of aging cats. Both driver’s and passenger’s seats have been fully stripped down, painted, reupholstered and covered with gorgeous new soft black vinyl. We are just awaiting some things called ‘hog clips’ which serve to secure the covers underneath the seats. They have been on order for a while and it is becoming frustrating not being able to put then seats back in Henri until they come.
During last week, the weather was much more cooperative. This meant that Barkis was able to finish and reinstall all the floor panels as well as to repaint much of the internal front cabin. On the weekend, he finished the rust work.
I even did a bit or work myself. I was able to identify as within my competence the job of removing the plastic lettering with which the previous owner had decorated the outside of the van. The lettering was, in fact, quite witty; it said “Grumpy old men’s 50th anniversary – La Mons or bust!” Evidently, the fellow and his mates had driven Henri all the way to La Mons for an H Van rally held a couple years ago. Judging by the number of beer mats stuck on the interior as part of the decoration, they seem to have had a time tres joyeux.
I received very specific instructions on how to go about the task. One had to begin by heating the plastic letters with a hair dryer. Yes, a hair dryer. Then, one had, ever so carefully, to loosen their edges with a rubber kitchen spatula. Yes, a rubber kitchen spatula. By these means the letters were able to be pealed off completely and the residue of glue carefully removed with a hanky dipped in white spirit. I don’t like drying my hair with a hair dryer because it dries it our. I usually just let it dry naturally or run the fan in the car on the way to work and sort of toss my head about whist whizzing around the North Circular road in my little blue car with the Obama bumper sticker on it. So, the only hairdryer I possess is strange one. A hand-me-down from Emily Anne and given to her when she was about 12 years old, it is bright yellow and in the shape of a duck. Yes, in the shape of a duck. You can imagine how bizarre it looked! Normally, when people pass by, they say something about Heri, but as I was working a way, along came a floppy haired young man in the company of two teenage neighbourhood girls. He took a look at Henri, smiled broadly, but and said not a word about how remarkable Henri. Instead, he shouted, “Wicked Hairdryer!” Barkis and I fell about laughing. I must get Barkis to take picture a when I get around to completing the work.
I should really call it a day, but I wanted to let you know that a number of key policy decisions have been made in respect of Henri. Amongst these are the decision to paint the roof, the headlights and the dashboard a creamy white instead of bright white, to stick with the original plan for red and white striped curtains (we both felt red gingham one would be too predictable) and, finally, the decision to have Henri converted to LPG (liquid petroleum gas), which is a lot more environmentally responsible and cheaper in the long run. I’ll write more about these momentous developments in the next instalment and also tell you about our plans for the trip to Europe and about our meeting with another H van enthusiast, Geoffrey, and his 40 rabbits.
Much love,
Susie
29.04.09
Susie,
ReplyDeleteSome time ago, Molly turned me on to VW camper, although I have yet to figure out how I'd haul the Harley. After your first post I googled Citroen vans and have concluded that one would make very hip camper AND carry the bike. I'd have to due something about that 50 HP engine ..... I'd love to see some pictures of Henri. Maybe Molly could post a picture of forward my email address.
Hi Molly ....
BB