Well, I’ve been pretty pleased with myself recently – no surgeries for a while now on the melanoma sites. No falls on the ice this winter, either, though there has been plenty of ice to fall on. The pain in my side continues but hasn’t been any worse than a typical pain in my side would be. The new “Quilters’ Quarters” shop is beginning to attract visitors and I’ve had some customers as well.
But … and there seems always to be a “but” when I begin with a positive statement. As a teacher, I was careful to begin every conference with a positive, then mention any concerns, and then close with a positive. It was called a sensitive sandwich. I promise to do that here as well.
The but in this instance is my short term memory recall. I do know how important it is to write things down. I write everything down. I have sticky notes all over my computer desktop – some are color coded and some are not – and some take a long time to find. But I know they are there and I don’t worry about my memory having to contain and release them on demand.
I have a calendar on my computer as well, and Rick keeps all of my medical appointments, business appointments, and special dates on his calendar as well. I bought a new calendar notebook to keep in my bag in addition to my faithful Harvard/MIT/Coop calendar book. (I love that book, because it is so small and can only hold so many obligations … so different than my daily schedule book for my school years!)
What happens, though, is that I need to record all of those dates and appointments in three places now. And then, I have to REMEMBER to read them! And therein lies the but of this post.
I missed my counseling appointment today. I knew when I woke this morning that I had an appointment this afternoon. Rick knew it, and had reminded me of it last night. I remembered to take my pills this morning. I remembered to send an email out to my niece today to check the wedding colors for her daughter’s bridal shower gift. I had a customer in the shop and cut her fabric, tallied her price, gave her the receipt … I was functioning well. BUT lunchtime came, I ate, answered some more emails, and at ten past the hour of my appointment, answered the phone to hear my doctor’s voice. My heart sank. I had forgotten the appointment.
She graciously rescheduled it for next week, same time, same day I will do my very best to record it in three places, and I know Rick will enter it into his calendar as well, And maybe I’ll learn how to set an alarm to go off on my computer or cell phone an hour before the appointment: something to catch my attention and make me look at my calendar(s) reminders.
The good news that I promised to share in closing this post is that I can still type fairly quickly and accurately (for the most part.) And I can qualify this lapse in memory by admitting to having scheduled too busy a week. The first week of every month includes a general meeting of the fire company, a general meeting of the Friends of the Library, a morning meeting of the needlework guild, and I made it to all three of those. We also had to attend (well, chose to attend) a public hearing on our health insurance coverage through the state’s retired teachers policy: GIC or the Town of Andover’s employee coverage. Rick and I and those we talked with on the way out all had voted to stay with the state, as if something isn’t broken why fix it … yet, the overall assumption is that it seems the town might intend to go forward with withdrawing their acceptance of the state’s group in the interest of saving money on their part.
And so the good news is that I don’t think my recall of details is getting any worse … I think I simply misjudged my ability to get to everything in this busy first week of the month. So we’ve chosen to skip the public hearing tonight here in town … one that will discuss environmental concerns for abuttors to the high school academic field’s proposed artificial turf (which is within a protect wetlands area.) There are stronger, more vocal advocates for the environment that will be present to watch out for the spotted salamanders that live in our back yard alongside the brook that borders our land, and the school’s. Pray God that they have not had the busy week that we have, and that they will be there to represent the little critters.
I learned today on Facebook that a woman I’d never met face to face died of a massive heart attack. Her name was Faye, and I came to know her long after she had come to know me. Four years ago, I opened my first website, Beyond Old Windows. It is a place where I began posting some of my accumulating writings … a way to find an audience for them. Faye found them, and was an appreciative audience.
A year or so later, after beginning to self-publish my books, I opened a Facebook account. Facebook, I’d been told, would be a place to make my books available to more readers. I wrote about Multiple Sclerosis, and I found a connection with a group of people with MS. Faye was again there, and when the group invited me to do a telephone interview about the book, she was among the callers. She told me of having read my website for the past year or so; I knew then that we were friends, even at a distance.
Faye shared photographs of herself and of her beautiful adult daughter. Her participation in conversations at the MS pages of Facebook tapered off in the past year, and then recently she returned. She was open, and wrote of losses … the loss of her husband, and then of his family – family that she felt had become her family. The feeling was not mutual, and she mourned that loss as well. But she felt that we, the Facebook members of the pages of MS, were also her family. She treasured that connection, as did the rest of us.
Her death was unexpected, and yet inevitable, given the disabilities she had experienced due to MS’s effects on her body. Her warm messages, her ever-present ” closings to her messages, SMOOCHES!” will be missed, and remembered with fondness. I will miss her steady confidence and can-do attitude, her faith and sentimentality in her posts, and the beautiful photographs of her surroundings that she shared with all of us. Perhaps we didn’t need to meet face to face, as we shared so much word to word.
There is another woman with MS whom I’ve never met; one with whom I had not been able to share words to words. I came to know her only through media … not social media, but news media. She was a woman of academia. She had dedicated her life to being a strong educator, and had found success within her field. But MS had found her, too. She eventually had to resign from her position as MS took from her the independence, spontaneity and strength needed in her profession. She went through the stages of grief one experiences with a loss. But rather than reaching passive acceptance, she remained in anger and defiance. She has preserved her thoughts and words relevant to the national health service of the UK in her farewell video. She made the video to be played at her funeral. And true to what she calls her independent self, she chose the time and place and manner of her death, rather than continuing the decline afforded by MS.
When I heard her story, I was troubled by the similarity of her career’s end and my own. I understood her reluctance to accept MS. I have chosen to stay in Denial. And I wondered how she came to her decision. I knew that her symptoms, like Faye’s, were more debilitating that mine presently are. And I chided myself for so publicly, so often, saying that I am “blessed” with a less-aggressive form of multiple sclerosis. I am humbled to think I would so confidently assume that it’s a matter of blessings … surely Faye deserved as many blessings or more than I. Surely everyone with a chronic condition like multiple sclerosis deserves blessings, as do their loved ones. What path my own MS may take is unknown to me, and while I plan to do my level best to hold it at bay, I can’t assume that it won’t have its own course to follow. I am sure this woman struggled with her decision. I am sure her sons, her family and friends still struggle with it. But I will let her tell her story here, and leave her in peace for having made her choice. I have no idea for how many years she persevered and moved forward before deciding to step out.
The most poignant statement she made, in reference to her view of MS and its incurable status and ineffective treatments that frustrate patients, families and the medical community alike, is the one in which she says “Compassion has no cost, and yet lack of compassion has an immeasurable cost.” She felt that some in the medical community involved in her care and treatment were without compassion; no doubt she believed that her decision was the most compassionate thing she could do, both for herself and for those who loved and cared for her.
Here is the link to Frances Medley’s “Explanatory Statement.” http://vimeo.com/84508563 I will always keep in mind her honest estimate of the value of compassion,and plan that in my life, compassion will always be freely given, and freely accepted.
Happy to say that the dermatologist’s assistant called me Monday to say that the biopsy on my “Mark of Zorro” emerging mole is just that, a mole, and benign. Happy to have good news to share, she was. And happy to receive it, I was. Now I get to have FOUR months free of dermatology visits! If I’m still clear, maybe we’ll get to six months, and then maybe a year!
Twenty-fourteen is off to a good, positive start! And positivity is the name of the game with melanoma, multiple sclerosis and anxiety!
Speaking of positivity, we’re making good progress on our Quilt of Valor. Check out our progress at the new blog for our quilt shop: you’ll find a table of pages in the top right corner of each page. Having fun, both with the shop and its blog. At Quilters’ Quarters holds the story of our new venture. Visit us and sign up to follow by email if you haven’t already, so you won’t miss any posts.
And thanks, always, for reading here and keeping tabs on me.
This week was another three month skin check with the dermatologist. And as much as I’d like to say all was well, I can’t, yet.
When I was in Bethesda in November, the doctor there (a neurologist who is running the Parkinson’s Disease study group looking for early biomarkers) did a quick physical, and commented on my ‘Mark of Zorro’ scar at the melanoma site on my back. It’s the first time I’d been back to Bethesda, and he hadn’t seen the scars before. It was the nurse practitioner in Bethesda who first suspected skin cancer of some sort, and that was eighteen months before this past visit (which is, as it turns out, my last visit to their site.)
He noted that there was an emerging new spot on the Z-shaped melanoma scar that looked suspicious, and asked me to have the dermatologist take a look at it. And so when we went into Brighton this week, the dermatologist agreed that it warranted another biopsy.
The same thing had happened three months ago with the melanoma site on my forearm. He did a biopsy there, and it came back showing melanocytic nevi, which he explained were cells about to become melanoma. He did a second biopsy right away on the site (actually, a double biopsy each time, as there were two emerging spots on my forearm’s scar) and the second repeat biopsy showed that he had reached the outer edges of the nevi and reached clear tissue.
Optimistically, he’ll do the same with this site. As he hasn’t called in four days, it’s possible that with this biopsy he’s already reached clear tissue and there is no need to go further for now. That would be the good news. The down side is that we continue to find sites to be concerned with, including the sites we’d already surgically dealt with. He said with these repetitions he’s unwilling to move me to a six month schedule of skin checks; we agreed to four months for the next visit instead of three, with the understanding that if I or another doctor spot anything, I’m to schedule earlier.
And so I will. If I hear anything from the dermatologist when I call in on Monday, I’ll update here again. But for now, the biopsy site is beginning to heal; Rick is doing his fine work with the wound care, and the discomfort is minimal. Bless him. And the antidepressants are doing their thing, for this round of suspicion has not provoked any anxiety in me. I guess I have normalized the routine. Relapsing Remitting Multiple Sclerosis has definitely taken a back seat to Recurrent Malignant Melanoma.
Today I will be an elf. I’ll call myself “Nana Elf.” Santa will be riding the fire truck to visit homes where parents have asked the fire department’s help in bringing Santa to visit their children and hear their wishes. As Santa’s own elves are very busy this month at the North Pole, I’ll be joining him as a ‘helper elf’ and visiting the children with him on the truck, going house to house, following a carefully planned schedule. From 3:30 to 7:30, when all the streets begin to light their Christmas lights, we’ll be driving through the neighborhoods bringing smiles, candy canes and presents to the lucky boys and girls whose parents’ wishes for a visit from Santa will come true. This will be my first time as a ‘helper elf,’ and I am so looking forward to it. Rick is concerned that all that hopping up and down in and out of the fire truck will tire me out or prove to be harder than I can do, but I’ve assured him that my joy in seeing all of the children and their smiles and delight with Santa’s visits will energize me to complete the evening’s tour in true elf style.
Monday the doctor visits will begin again, with a trip into the city in a promised blustery storm. I know that Rick will get us there safely, and our Abby will carry us well. The following Monday we’ll return to see another doctor in the city. And then we’ll travel to Maine to see our grandchildren and daughter to bring presents to them later in the week.
We are so fortunate to have Abby, a vehicle we can depend on to take us to these visits. She is the one luxury in our lives … safe, dependable travel. Though I’d planned to work through her final payment date, and though the early ‘Medically-required” retirement interrupted that plan, we’ve carefully budgeted our lowered income and prioritized keeping her in the family. Chevy has never let us down. Of course, we could get a bumper sticker that we’ve often seen on smaller cars – one that says “My other vehicle is a fire engine” – but that would seem to undeservedly belittle our Abby. So we ride instead with a proud “State of Massachusetts Retiree” sticker, and a “Phi Kappa Phi” sticker, and a Firefighter’s horizontal red line on black sticker, which would alert other firefighters that we’re family in case we’re ever lost or stuck somewhere. And we also ride with our magnets on the back that say “Wooden Toy and Gift – Buy them all; we can make more,” and our new one, reading “Quilters’ Quarters – Fabrics, Notions and Lessons.” Each of these gives a glimpse into our lives in our happily ever retirement. And each invite conversations along our way.
Wishing all of you happy Christmas memories-in-the-making! And please remember to Shop Local!
The clocks all went back an hour this morning. I’m very happy that they don’t do that before Halloween, although our town delayed Trick or Treating for thirty minutes to accommodate the many working parents who needed those extra minutes to get home before the trick or treaters went out. We had a little drizzle of rain, but that did not dissuade the parents who had toddlers’ costumes ready. I think we saw about sixty children with assorted parents in tow.
The dermatologist’s secretary called me on Halloween morning to let me know that the repeated biopsies of my arm showed no ‘atypical nevi’ at the edges, and pronounced the earlier reading scar tissue. I’m clear, now, until the New Year. Two full months of no digging or prodding or waiting for call backs.
I found some old cafe-type curtains when we moved into this house almost twenty years ago, and tucked them away “just in case.” This week, I found a use for them. We used them to drape the space underneath the cutting table, hiding the storage area from view. The curtains are reversible: a solid red cotton on one side, and a forty-fifty-style small print of red and brown medallions on the other. That print reminds me of the kitchen wallpaper in our home in Boston during the fifties. The fabric, perhaps because of its age and frequent washing, is incredibly soft,; as I hung them out on the line to dry they brought a wonderful fresh-air feeling into the Quilt Shop with them. I had to hem two of them to match the others, but that was fairly easy. I still have three longer ones left, and am thinking of possibilities for them. I could have just tossed them out when we moved in, as I hung my own yellow gingham curtains in the kitchen, but instead I added them to my fabric stash. And that’s where they were when I realized a new use for them.
My new book has gone through a week and a half of proofreading, changing, re-proofing and additional text being added. I’ve now reached a point where I’m re-thinking the idea of publishing it as the two-part, mystery story and annotated album of quilts that it is presently. To print it in it’s current state will cost more than I think most customers will want to pay; it’s a paperback, after all. I might separate the two parts and publish two distinct, slimmer volumes with more reasonable prices. I know I wouldn’t want to pay almost $30.00 for the combined volume, but might be willing to pay $15.00 each. Or not.
We’re off to the quilt supply this coming week to purchase more notions and fabrics. Then our Abby (vehicle) goes in for her 50,000 mile tune-up to be ready for our long ride to Bethesda later this month. This will be my fourth week-long visit to NIH (National Institute of Health) for the Parkinson’s Bio-marker Study group. When I told my colleagues at school how well I was treated there in the hospital, one of them told me I really ought to take a cruise sometime to experience true luxury! So I call these visits my cruises.
November will be a busy month. Be well, all, and thanks for stopping by here to see how I’m doing.
I am getting ready to add a new department to Terry’s Thoughts and Threads in Wooden Toy and Gift. We are going to open a Quilt Shop and stock fabrics, notions, batting, ribbons, threads and more. I have long missed the former Cressy’s 5 and 10 that was in our town center, and many others have told me that they, too, miss the convenience of being able to buy sewing supplies right here in town.
Rick and I will be opening the Quilt Shop on Small Business Saturday, November 30th. The shop’s opening will coincide with the release of my new book, titled The Quilter’s Quarters. It will also be the weekend before the Georgetown Peabody Library once again hosts the Georgetown Quilt Exhibit, which will hang from December through January .
We will make another trip next week to the wholesale quilt supplier to gather more thread colors, fabrics and embroidery floss. I have one friend who is going to place some one yard cuts of fabric with me on consignment: we’ll call that Barb’s Yards. Another will sell me her quilting patterns wholesale. And an artist friend who does beautiful paintings is going to place greeting cards with her artwork on consignment. The shop is beginning to look more full, which will please customers who want to shop local.
We met with with the dermatologist again today, so that he could see whether the two sites on my arm have enlarged or stayed the same. He decided to biopsy them again, a little wider. If these two come back with clear margins, I’ll be free until January. But if the new biopsy samples still show nevi melanocytic cells (the not-yet melanoma) then he will send me on to the surgery for a wider excision (more surgery, more sutures.)ers.
I told him I would be going to Bethesda next month, and asked for a copy of the biopsies. I know the nurse practitioners there like to be kept up to date on health issues with the people in their Parkinson’s Biomarker seven year study group. If I’m lucky, these new biopsies won’t call for additional surgery. I don’t know how that might effect the tests they do at NIH. But time will tell.
The dermatologist called me Friday to let me know that the biopsy results show the brown spots re-appearing on my forearm are not necessarily true melanoma; he called them atypical nevi. He suggests two choices: return to his office in two weeks for a follow-up biopsy to see whether the new spots are still expanding across the original surgical site, or go directly to the surgeon and have them cut out now.
I asked him which course he would recommend, and he said he would wait for the second biopsies before opting for more surgery. I agreed. Evidently if the spots show more atypical cells beyond the original biopsy did (they extended right to the borders of the first) then it is likely to become more malignant melanoma. If they haven’t changed at all, they are a slower growing atypical cell and would not require surgery, yet.
Such a funny word … yet. I used it often to close a sentence uttered by students … “I don’t get it” (yet.) ”I can’t do it” (yet.) “My essay isn’t finished. (yet.) It is a word that offers a promise of more to come, and that more can be a positive thing, or a negative.
Coaching my students to always seek to improve their work, making it “even better” than they might have in a first draft was an uphill Sisyphean push. “Yet” did impose an expectation of improvement, but gave it with an allowance for time. I’m sure it was a mixed blessing to the students.
“Yet,” in reference to the progression of a disease, can be very negative, or very positive. When a skin surgeon is doing Moh surgery (repeated cuttings until biopsy shows clear margins) :yet” implies that it will, eventually, be a clear margin, with no further evidence of the cancer. If he says it’s not clear yet, that implies a disappointment.
I have accepted that I am not finished “yet” with melanoma treatments. In truth, I may never be finished. Or I may, at some point, decide that I am finished. Right now, I feel free to make that choice. I do have things to look forward to, and I also have things that I can look back on and take satisfaction in having accomplished them. My children are grown. My grandchildren are also nearly grown. My parents are at rest.
There may be more ahead in our lives … more grandchildren, and great-grandchildren … all of that will happen in its own time, whether seen by me or not. There is a peace in knowing that. There is rest ahead.
There are no immediate reasons to believe that MS will ever be understood or cured in my lifetime. I can say the same of malignant melanoma. We can say the same of the two-party system in Washington. The country is not waiting for someone like me to solve its problems. I vote, as that is my responsibility … it is the responsibility of all of us, though some choose not to do it. But whether I vote or not (and I do) Congress will still be arguing decades from now … God willing another century from now. Nothing I do with my vote will change that.
I’m tired of the newscasters opening eveyr news program with stories of Congress bickering with each other. I’m sad to hear of the hardship this government closure is imposing on some American families. I know I am among the fortunate, with a self-funded pension not accessible by politicians. I know why I have what I have … because the union advocated for us. I became the union and took my turn in difficult years of negotiating. I tried to do so with dignity, and gentleness. I counseled younger teachers in bitter years to have faith in the strong people that stood around us. But I am weary of the fights. I am weary of the melanoma fight, the MS fight, and the depression fight. I am weary of so much of it.
I will stay in it for now. I want to get the new Quilt Shop up and running. I want it to be a success, financially, to replace the rest of the pension that I lost by giving in to MS and retiring early. I want to succeed in earning that little bit more for us. If having the continued surgeries led to a definite end of melanoma, I would not hesitate. But going back to repeat sites is not progress. It is not treatment. It is only maintenance, and it is tiring.
I do admire those who can stay in the fight. They most likely still have responsibilities to meet within their families, and I wish them well in their endeavors. Time will tell how long I can keep up with them, and with “yet.”
When Rob was a little boy and riding with me every morning, he to day care and I to school, we would watch the changing seasons together. We rode on a beautiful road with many trees and handsome homes, traveling from our town through two others before reaching the town where we would both spend our days. As we approached the Burger King at an intersection, he would politely ask whether we had extra money that morning. If I said no, he’d say nothing more. If I said yes, he’d ask (politely again) could we stop to buy a little box of mini-muffins for him to share with his day care friends, and we would.
Each fall, when he was little, we would appreciate the amazing foliage we were privileged to enjoy along our way. I told him, the trees always put on their best colors for his birthday, which fell in mid-October. Living here in New England, we knew that the wonderful autumn temperatures and colors were a treasure that blessed us, compensating abundantly for the summer’s sweltering heat and the winter’s prohibitive blizzards. Some mornings on the ride we said little more than “Look at the trees in the wetlands … they are always the earliest to turn.” And inevitably, a few days later, we would comment on how many leaves had fallen from the maples and oaks that lined our route.
As he grew his school was in our own town, until middle and high school, when I brought him back to the town where I teach. Again we shared those morning rides, but he was older now, and often had headphones and his own music flowing into his ears. Our conversations dwindled to nil, and I coached myself to respect his ‘alone’ time on the morning ride to his busy high school days. And in time, he began driving his own truck, and we lost our morning time together. For a few more years, though, I continued to enjoy those morning views of dawn breaking as I drove through one town and then another, and always thought of him and said a prayer that his day would go well.
The trees still dress in their best colors for his birthday. This year, maybe we can travel together, with Rick and perhaps Rob’s girlfriend, to Maine instead of to school, admiring the foliage, and visit with Trish and the kids to celebrate Rob’s birthday amid the falling leaves.
Yesterday, Rick and I drove into Boston and met with the dermatologist for yet another three month skin checkup. He noticed many more spots on my face that he wanted to treat, and we talked about the cream he had prescribed three months ago. I told him it was much worse than the cryosurgery ever was, and so he decided to go with the freezing again. He also looked at my forearm where the malignant melanoma had been eighteen months ago, and agreed with me that the reappearance of brown spots was reason for more biopsies, and he did two of them. I’ll hear the results in a few days, and if the cancer has returned I’ll go back to the surgeon and have it cut out again. In the meantime, the frozen spots on my face will again crust over and fall and eventually fade.
I haven’t been back to school to visit my friends in their classrooms this year. I may wait until November or December to do that. Maybe by then my face will again be clear of treatments and scars, and my smile will be genuine.
This has been a challenging season for many reasons. Continuing skin surgery, ongoing and back-to-back heat waves, high humidity and rising gas prices. I was happy to flip the page to September and will be happier still when the last day of summer passes.
Summer has always been challenging for me (sometimes I claim that’s why I became a teacher ,,, out of school for the worst season’s weather.) But though every summer brings heat and humidity, I seemed to have a lot of company complaining about it this year. We had a few absolutely beautiful days in late August, with fresh dry air and reasonable temps in the seventies. September opened with a return of the heat but is calming down now. Nights are dark with cool breezes that allow a better night’s sleep. I’m a winter baby, after all.
I talked with the counselor this week, and decided with her that the need for continued talk therapy is lessening, as the meds for depression have settled me into a comfortable acceptance of ‘what is.’ She asked me how I would define happy, as I had told her of our mind-mapping group of artists with whom we meet occasionally to strategize ways to promote our arts. The center of my mind map is the word “happy.” The purpose of the maps is to identify what our main goal is, and what we are doing toward reaching it. I told her I feel that I have reached my goal, and that now I think of it as ‘maintaining happiness.’ Rick is absolutely the center of my happiness. Being at home with him brings me peace.
I talked next with the psychiatrist who prescribes my antidepressant and asked him what would follow? He had told me when we first met that he would want to see a ‘complete remission of depression’ before discontinuing the meds, and that he would rarely recommend that at this point in the year. The darkness of winter is not a time that he would want to ‘try doing without’ a prescription for his patients. And before discontinuing it in the spring, he would want to see that remission last through all four seasons. I like his cautious approach.
He explained that my depression is a chronic, long-term condition that is not ‘episodic’ and so cannot be remediated by improving conditions around me. It is a biological depression, (which I understand is caused by an imbalance of chemicals in my central nervous system, and probably some structural damage due to the MS lesions and related brain atrophy.) The research I’ve done through the years since the diagnosis of MS continues to validate the challenges I’ve been facing for so many years.
I’m still not convinced that what I have is different than what my dad had, but I’m willing to consider that he may in fact have had MS rather than Parkinson’s. He never had a prescription for dopamine, which I believe is the only true test of determining whether one has Parkinson’s. If dopamine relieves the symptoms, it is Parkinson’s. If dopamine does not relieve symptoms, then it is not Parkinson’s.
I’m scheduled for a week in November to return to the NIH in Bethesda, MD for the continuing study seeking early biomarkers for Parkinson’s. I do trust those folks to know what they are looking for, and what they are and are not finding in my central nervous system. To date, they tell me I do not have Parkinson’s. They, and my neurologist here in Massachusetts, are sure that I have relapsing remitting multiple sclerosis. They witness the ongoing damage to the structures in my brain (lesions and black holes, continuing atrophy and a small, slow-growing tumor – a meningioma) and advise me to continue to monitor that with my neurologist.
I share a’ closed board’ for folks with MS on Facebook, where I read of others’ challenges and progression. There are some who continue to take the discredited interferons as they are young and trying very hard to stay in the workforce. There are others who have made ‘menu changes’ as I have and work toward avoiding inflammations and relapses with apparent success. And there are still others who have tried every DMD (disease-modifying drug) that doctors will prescribe and have still progressed rapidly toward secondary progressive multiple sclerosis. And there are those who have carried the label of primary progressive multiple sclerosis and experience losses of mobility, speech, eyesight, etc. It is a place where they can share their fears and successes privately, as the comments and posts are accessible only by members of the closed group. It is a mutually-supportive group, and one where I try to make encouraging comments and ask for informed advice. I have made some good contacts there, and feel comfortable within the ‘virtual group’ conversations.
I will see the dermatologist again next month. I will see the Parkinson’s team in November. I will see the MS neurologist in December. I’ll see the counselor and the psychiatrist again in about ten weeks. The skin surgeon is secondary, depending on what the dermatologist finds. I’ll see the thyroid specialist again in the spring. The number of doctor visits is beginning to lessen this year, much to my relief.
Rick and I will be working toward opening a Quilt Shop in our barn. It is something I’ve long thought of, since our local five and ten general store closed down several years ago; I miss their fabric department and notions. We’ll start slow, acquiring fabric as we can afford, month by month. We’re going to limit the posted hours to four day a week, with Sunday Monday and Tuesdays reserved for doctors and family visits. We’ve begun to spread the word among friends here in town and on Facebook. We’re hearing affirmations that others in town feel this will fill a need and may be a successful venture. My wish to sell enough books to replace what I’d lost by retiring two years earlier than planned hasn’t worked out as I’d thought; I’ll continue to write but will have lower expectations for earning money that way.
I may not be able to beat the depression without meds, but with meds, and with the ability to continue to remove negative things from my surroundings, there may come a day when I forget that I have more doctor appointments than social engagements. I do miss my friends at school and my identity as a respected school teacher, but I have Rick and we have all that we have here, together. If we can pay the bills, buy food, and travel to see our grandchildren now and then, it will be enough.
- Parkinson’s sufferers told ‘you’ll get better’ (scotsman.com)
- Linda Ronstadt Says Parkinson’s Took Her Ability to Sing – ABC News (blog) (abcnews.go.com)
- I didn’t know mind mapping software could do THAT! (mindmappingsoftwareblog.com)
- Multiple sclerosis appears to originate in different part of brain than long believed (eurekalert.org)
- Brain Inflammation Linked To More Severe Parkinson’s Symptoms (albanytribune.com)