I continue to live happily ever after in the land of denial as far as MS is concerned. I accept that the “benign MS” diagnosis nine years ago as it has been recently described: a condition with ‘only’ cognitive symptoms…
Yes, I acknowledge that my short tem memory is gone … but most of my friends admit to theirs also having disappeared. I am now in the second half of my sixties … closer to 70 than to 60. I am reliant on writing notes to myself, on keeping a written calendar with me, on looking often at the date on the computer’s calendar, and of asking Rick at the start of each day what we have to do that day.
My sense of scent is also gone … which is a blessing most often, especially when cleaning out the bunnies’ cages occasionally. Or when a skunk hides under the barn. I don’t smell food cooking, and with the loss of scent, I’ve had a partial loss of taste. So I don’t really miss roast beef or turkey gravy anymore. And I can still taste, and enjoy, dark chocolate, so there’s that.
My typically weak sense of direction now includes loss of direction of sound … although I’m beginning to compensate for that – if I hear something to my left, I now know to look to my right, and vice versa.
But today brought something new. Actually, it started yesterday, or maybe was a result of last week. Because last week I went out to help a customer in the shop who innocently arrived in our driveway, not realizing that we are closed for these two months. And on that day, temperatures were in single digits, and the barn, of course, was very cold. I found a fabric she liked, and cut it with scissors – my very cold metal scissors, and my fingers went numb. Within a few minutes of further chatter, I began to feel very dizzy, and sat down. Rick was there, too, and he finished the transaction with her as I headed into the house, excusing myself. And once I was inside, I passed out.
It surprised me, as I hadn’t done that since discontinuing the MS injections (which had always temporarily lowered my blood pressure, and sometimes caused dizziness and fainting. But I realized later that, with both cold hands and feet, and standing for more than a few moments in a very cold space, my blood had no doubt rushed to warm those extremeties, leaving my head with less blood volume, and so lower blood pressure, dizziness, and a faint.
I was fine in short order once back in the warm house, and for the next few days as well. But yesterday, I woke up with a very warm right hand, and a very cold left hand. I thought it must be the way I’d slept with one arm under my pillow. But when I took a shower, I realized that my left hand felt no discomfort and my right hand felt as though the water was scalding hot (it was not.) My arms were as disparate in temperature as my hands were … I asked Rick when I got downstairs to feel my hands and tell me if the temperature of each was the same as the other, and he said they were. Strange, I thought, for they felt so different to me.
Today, we went to the library and tidied up the book nook, then I joined a group of quilters for a sew-in. When I rested my right wrist on the bed of the sewing machine, I felt a sharp pain in my forearm. When I did so with my left wrist, I felt nothing. My right arm grew warmer and warmer (to me) but the color of both arms remained the same. My left arm felt nothing … and my right arm felt hot and painful.
A few hours later, Rick and I met my sisters and husbands for lunch, and my right hand continued to feel hot as we walked from our vehicle to the restaurant. The weather was beautiful – in the fifties, and I was wearing a sweatshirt rather than a jacket. The difference in temperature between left and right continued in my arms, and seemed to have spread the heat to my right leg (but, again, not to the left.) Rick thought my left heel was dragging on the sidewalk as we walked, but I was unaware of it.
Tonight, as I sit here typing, my right hand, which is usually colder than the left because the unlit fireplace is to my right and there is sometimes a draft on that side of the couch, continued to feel as though I had a ‘fever’ in my hand and arm. If it were my left arm, I would worry about a heart attack. But it is not, and so I am not worrying … just observing, and puzzling as to what this might be.
We’ll see what tomorrow brings. Mother Nature seems, too, to have a broken thermometer this season … single digits one day, fifties and sixties the next, then back down, and then today, back up. As Mark Twain once said, “If you don’t like the weather in New England, wait a minute.”
Rick and I celebrate Christmas more quietly than we did as a young couple with children. In our hearts, we keep
Christmas all year long. We never take the trees down in the shop, using them as backdrops for Rick’s wooden ornaments and now my sewing notions. The manger in our living room stays up all year long, and the nutcrackers and angels are always in their places on the mantel. Each year we hang a large wreath on the street side of our house, and one on the front door. The candles stay in the windows, though they are not lit until the day after Thanksgiving, and are not lit again after New Year’s Day.
But this year, while all of that did continue, we never set up the Christmas tree in the parlor. We didn’t hang the garland and red bows on the white picket fence, and we didn’t wrap the post lantern with colored lights. We didn’t replace the window frame lights on the front of the shop, and we didn’t play Christmas music in the shop. Still, we greeted friends and customers with “Merry Christmas” and “Happy New Year.”
It’s not that Christmas slipped past us; rather, we slipped past Christmas. The weather was all wrong … sixty degrees on Christmas Eve, no snow to reflect outdoor lights hung on the fence … We did go to Maine for the day itself, and enjoyed the company there of our grandchildren and daughter. But we didn’t go to my sister’s house Christmas night as we usually do. And there were some other gatherings in the family to which we weren’t invited … most likely because they occurred on Christmas Eve when we would normally be in Maine but weren’t this year. The grandkids were elsewhere with the other half of their family until noon on Christmas, when we arrived and they arrived almost simultaneously.
Families without young children behave differently on holidays … families without elders also behave differently on holidays. And holidays that occur on weekends seem a bit more rushed than those that cause days to be observed in the middle of a work week. Holidays that occur after retirement are also somewhat less remarkable as a day off in retirement is like any other day off in retirement. Social circles are smaller, as there are no colleagues and work mates with whom to anticipate the release and celebrate the season.
For Rick and me, our circles are changing. We have a close circle of friends that have become our local family, and we celebrated New Years’ Eve with some of them. We talked that evening of what retirement has brought to our lives. We talked about preferred ages or life stages. We talked about the constant struggles of our younger years, and the sudden loss of responsibilities to others that retirement brings. Some of us spoke of our favorite ages … or our most comfortable ‘inner’ age. I thought of having always felt forty – as a child I felt the responsibilities of getting myself to school safely on the buses or trains of the city; of being a parent just a year after being a bride, of spending years of energy, time and money becoming a teacher, of feeling confident and valued in my forties as a functioning adult.
My late forties and early fifties were consumed by elder care, teaching, and eventually my own diagnoses. My late fifties and early sixties have continued the diagnoses and treatments, medications, surgeries and seemingly endless scheduling of medical appointments. My long-sought career of teaching ended at the beginning of my sixties, bringing on depression and self doubt. I entered retirement reluctantly, and somewhat resentfully, having experienced serious cognitive limitations and sudden loss of professional confidence.
Rebelliously, I set out to re-establish my identity in the only way I could; I wrote several books in the first two years, and published them. I opened a quilt shop and learned how to use social media to publicize the business. I joined town committees as a volunteer, and took on some responsibilities until I realized that the cognitive challenges I was facing were more than I could ignore, and I learned how to step back and let others better equipped take on those challenges. I learned to be a supporter rather than a player.
When I talked in mind mapping today about my routine day vs. my ideal day, and drew a pie graph to clarify how my days are spent and how I wish they were spent, I had a more clear self image. I understand the limitations imposed by the ‘cog fog’ I have each day. I cannot make decisions on the spot as I once did, and had to, as a teacher. I cannot multi-task and pay attention to more than one person at a time in a group. I have not yet disposed of the crates of lesson plans, rank books, spread sheets and resource folders I relied on as a teacher, though they offer nothing to me since retirement. I cannot bring myself to dispose of the hundreds of envelopes of spiritual cards and funeral blessings that continue to arrive at my address in my name, in my mother’s name, and my father’s name. I have fabric projects in process in almost every room of the house now, and the mental weight of the unfinished works paralyzes me. I have characters in a book half-written and now still waiting during more than a year of procrastination. I have books that I want to read that I cannot concentrate on and so cannot benefit from. I am humbled and yes, I am saddened. But I am not depressed enough anymore to want to give up.
Why does my energy lift when I am in the shop? The found answer to my friends’ question startled me … that the household clutter makes my home mentally exhausting to me. Clearing out is a challenge that faces all of us in retirement; recognizing that was reassuring … we each have a lifetime’s accumulation of clutter … to know that I am not the only one dealing with clutter-smothering… to know that my friends allow me to be me, to speak honestly with me about limitations without judging me as failing to do what ought to be done. My friends share their worries and self-doubts and deep wishes with me, validating that they trust me to listen well, and to make suggestions where I can and just be supportive when I can’t.
And Rick — always my best friend, now, and back during the darker times, and further back during the brighter times, but still, now, during the daunting times … Rick also listens to me with compassion, and shares my worries
and his own worries openly, validating that both of us have faced and continue to face challenges and limitations, and that we both have not given up or given in, and have much still that we want to and will accomplish in these years ahead. Together we continue, and together we will find the enjoyment in happily-ever-after-retirement. We will continue to walk upright together, with our friends at our sides sharing the sunlight and casting
shadows where we will.
But there is a contest being run by Healthline.com, interesting in finding the best health blogs for the year. I don’t post very often, but when I do, it is to update friends, family and followers of recent health related events.
Last year a blogger I follow regularly won one of the three cash prizes, and that inspired me to give it a try. Look to the right sidebar and you’ll find the link to click. When the page opens, you can search for my blog title (Terry’s Thoughts and Threads) and click ‘vote’ when it appears. That’s it. (well, they will ask whether you want to vote as a Facebook user or a Twitter user …) You can vote for multiple blogs each day … and you can vote every day!
If you’ve found my blog interesting, or helpful, please give it a vote? And vote often ~ every day through January 21st. It’s always worth reaching for the stars!
By the way, there are multiple topic pages as part of this blog … see the very top of the post? Click on one of the titles there, and an additional page will open!
Thanksgiving is usually spent in Maine on a weekend, as our grandchildren traditionally spend the day with their other grandparents. They are grown now, adults themselves in colleges, but still continue this tradition. Their father remarried and they now have a little brother who is just beginning family holiday traditions, and so they go on.
Christmas in my childhood was always spent at home, with my sisters and brothers, and our new toys, and no school, and a family meal.
Grandparents had passed away before many of us were more than young children, and our parents were the oldest generation. Now, they, too, have passed away, but not before knowing all of their grandchildren, and passing on their own traditions with an expectation that they would be followed.
Our daughter (their mother) has a new partner and wanted to spend the holiday with his relative, an elderly aunt, so Rick and I made plans to have a quiet Thanksgiving here at home, just the two of us. Our son is a young firefighter and works holidays so that those with children can be with them.
It was a mild, quiet day together, and Rick and I enjoyed the time together, sharing a small turkey dinner. Next year, I think we’ll invite friends to go to the senior dinner here in town the week before the holiday, and leave the day itself open, as we’ll have a new daughter in law with her own family. We will take our cues.
Their wedding is next fall, and is going to be a weekend event in the White Mountains. It will be a small gathering as compared to weddings past, consisting of immediate family and the couple’s friends. It is what they want, and we will do our best to see that it is what will be.
Family holidays had always been centered around the previous generation, who have now all passed on. We are now the seniors, with grandchildren’s and great-grandhildren’s generations finding their own traditions. Our generation has shifted our focus from our parents’ to our children’s holiday celebrations, and we travel when needed rather than uprooting them from their holiday settings.
There are times when we remember our years as the parent-generation, and look back and know that uprooting our own children to visit our parents’ houses for every holiday meal may have been what we thought right at the time, but now wonder why we tolerated that expectation. It is not what our parents did. There were no grandparents to visit for holidays … they had passed years earleir. We knew little of their lives. The tradition of spending holidays at the grandparents’ homes evolved when our parents generations became the grandparents generation. That tradition became an expectation of our generation to fulfill. It was our children’s generation that grew up with grandparents who expected to be the home base of holidays. It is a tradition that Rick and I have not held onto for our own children; instead, we have been willing to travel to them to accomodate the other half of their famiy. It is not, in that sense, following a tradition; it is, instead, allowing them to create their own… and feeling relaxed that we can play a passive role when invited to do so.
My remaining sisters and brother each handle the holiday sharing in their own family’s way. I think of our grandparents, the immigrants who came here, as the seeds that bore fruit and the fruit became a tree. The trunk of our tree, our parents’ generation, is now absent but present in our thoughts. We are the branches and our children are the outer branches and their children are the lighter branches and their children are not yet more than twigs. The distance between the main branches is great, as need be … a tree would not stand long if all the main branches were close together. The in-laws are off-shoot branches of their own with their own network of outer branches that celebrate holidays in their own way, in other places, and to which our outer branches are connect and drawn.
Three of our main branches have died, a sister and two brothers, but the outer branches connected to them are still growing; some of the outer branches face in very different directions from the others, and may not share the same rays of sunlight other than with their own siblings. Location makes a difference; distance makes a difference. The outerbranches are cousins … we ourselves were cousins, yet did not celebrate holidays with our cousins. Though connected at the level of our roots, many of us were not entwined in our growth. And so why would we expect our outer branches to celebrate holidays together as adults with their own entwined spouses and their own children? They have siblings with which to share things, when sharing is possible.
In time, more of the main branches will weaken and will need to conserve their remaining energy to support only their outer branches, with little left to support the other main branches. It is what happens in a life cycle ~ despite the word cycle, it is not infinite. Trees like redwoods will stand for hundreds of years. Others will bend and break in the wind and weather. Birch trees have a short life span. Oaks live long lives.
The holidays seem to invite this kind of reflection … of retrospection, of respected perspective, acknowledged differences, and of acceptance of the finite end of the cyle of life … the death that awaits all living things. Those who have passed on are not forgotten ~ those who remain here and witness the endings as they occur are left the wiser, and the more prepeared for the inevitable changes that life requires of all of us.
Thomas Friedman wrote, in THE WORLD IS FLAT:
”Does your society have more memories than dreams?” (he goes on to say)… organizations and societies are the same. If they are focussed on the past, if memories exceed dreams, they are in trouble.”
When memories exceed dreams, the end is near. Holding on to traditions when the trunk of the tree is passed on will not strengthen either the main branches nor their outer branches … continuing to ask the same nutrients from the soil generation after generation will weaken the soil itself, and it will not be able to sustain that tree any longer, and the full tree will die and fall.
When dreams outshine memories, new growth is possible. New growth may require new forms of nutrients, and may turn in new directions, and establish in new locations. I look forward to the differences in holidays of our future. My memories do not exceed my dreams. I am open to change, and to difference; if shedding the memories’ expectations is choosing new nutrients, I am willing to do that. It is the outer branches of any tree that blooms most beautifully. It is the main branches that must bend in the wind while bearing the weight of the weather to allow the outer branches’ twigs to reach for the sun and shine.
Our grandparents came from across the ocean, leaving all family connections behind and broken, and their children, our parents, chose their own traditions which became expectations upon us. To sustain life, it is time for change. The outer branches will spawn seeds that will perhaps blow in the wind, in a new direction, where they will establish their own holiday traditions. I wish them well. Our generation is one of memories, as we were taught to remember those who have gone on before us. We lived to meet our parents’ expectations. In many ways, we did just that.
I think our grandparents felt differently about memories and dreams. I believe they had dreams and the courage to seek them out. I wish for our grandchildren more dreams than memories, so that in their lifetime they, too, will find happiness and light. As our grandparents did.
It is nearly the end of October; the fall is a quieter season for us … the activity in the quilt shop has dropped back down to just a few customers each week. My health has been up and down as the season’s changing temperatures are fluctuating above and below seasonal normals. And I find that I don’t handle the differences as well as I would like.
Fatigue was a large issue during the heat of the past few months. As cooler weather arrived, I looked forward to returning to a better level of energy. The change in temperature isn’t really a factor when I stay indoors, but when I walk outside if only for a few moments, I feel the drop in degrees immediately, and react with a full body tremor. When I go back indoors, the shaking continues for quite a while, even though I try to warm up quickly with a quilt or afghan on the couch. It seems to take me much longer to get back to a normal temperature than I would expect.
Rick and I took a walk a week ago, just around the block to the funeral home for the wake of a former neighbor of ours. Bob was a wonderful man who lived across the street from my parents’ home, and he developed his property into a wonderful agricultural spot, growing fruits and vegetables abundantly enough to have a farm stand roadside. When I was still single and living with my parents, I would babysit for Bob and his wife Barb, and Bob would walk me home late at night, making sure I was safely across the street and all the way up the driveway to the back door. I remember shivering in the night air then, but the shivering stopped as soon as I was back into the warm house. But this fall, walking home from Bob’s wake, the cooling air again chilled my skin, and returning to the house didn’t bring that quick relief … it took a while for my body to warm up. And the same thing happens when I eat frozen yogurt. My body temperature drops, I shake and shiver for at least half an hour afterwards.
I’ll mention this to the neurologist when I next see her, this winter. It may be related to MS, or it may just be something that comes with age. I remember when my wonderful family doctor, many years ago, told me to wear wool socks from fall through spring, and so I know it is time to dig them out and put them on each morning.
As for the melanoma: I saw the dermatologist a month ago, and he did a small biopsy on the back of my neck. As he did not call with results, I am to assume that it was negative for skin cancer. It seems that each time I go, there is almost always something to be cut or frozen … one is no more difficult than the other at that diagnostic level. And I haven’t had to go to the skin surgeon to remove anything for quite a while now … because, I think, we are catching these recurring sites quickly. I still see the dermatologist for a skin check every four months now (an improvement over the three month schedule for the past two years.)
Rick and I are planning to take a winter vacation this year. We will probably close the shop for the worst of winter, reopening in the spring. It doesn’t make sense to keep the heat on when few customers come in for fabric and notions. I will still have lessons with my students, but they will take place here in the house, in the room with the attached greenhouse and the woodstove. It’s always cozy in that room, and the geraniums that my friend Mary brings in each fall brighten the spot throughout the winter.
I did finish a few quilts this summer, one for our grandson and one for my sister’s birthday … I have two more to work on in the family before I can work on the additional customer quilts that I had agreed to make last fall. I have had a few more customers come in since, asking if I would make or finish a quilt for them. But I answer differently now … I offfer to connect them with one of the two women in the quilt guild that enjoy finishing quilts, and/or I offer to teach the customer how to make and finish the quilt on her own. It’s not as hard to say no to making quilts for customers as I thought it would be, and I have to say no more often now. It takes longer to finish things, as I have to sit and rest for a while after each half-hour of sewing at the machine. As long as I do this, I can stay ahead of the worsening back pain. If I try to push through it and continue sewing without these frequent rest periods, I pay dearly the next day.
In all, life is good right now … manageable, and I’m learning to pace myself and save energy … so I can continue enjoying the company of customers in the quilt shop, and the group mind-mapping days with other artists in town, and planning fundraising events with the Friends of the Library, and meeting with the fire company’s association members, and the historical society. The piece that is missing in my days now is my writing … Henry and Helen are still waiting patiently for me to finish their second book. Perhaps after my niece’s quilt, and before my son’s fiance’s quiet, I’ll be able to write in the quiet of winter.
Be well, all, and thanks for keeping up with me.
I read comments on a closed page of Facebook ~ only members of the page can read it, so comments remain unseen by non-members. Reading them, one after another and all posted within a time span of two hours, from patients newly diagnosed and from those who have dealt with MS for years … well, they do have a common theme. Many with MS believe that, because some symptoms are invisible or misunderstood, friends and family have difficulty believing the reality of the symptoms.
I also answered the post, in a rather long-winded way:
Reading all of comments saddens me … Yes, there are friends I’ve lost but that may have been due to my retiring early … they are all still working, and most of my friends were workplace friends. My time is more my own, but theirs is not, and I understand that.
What saddens me is the pervasive sense among us that we believe some in our lives have an impression that we are ‘just making this up.” Not that many diseases or conditions today are still considered uncurable … so it’s hard for us and others to believe that this can’t be cured, eventually. We walk miles upon miles and raise tens and hundreds of thousands of dollars for MS research, and they come up with ‘new treatments’ and ‘new theories about causes’ when in fact we and others may believe that a cure will never be identified because it will put hundreds of medical people out of a job.
In my depression I believed that people thought me a fraud … in fact, it was myself doing that thinking. Most people have many other concerns in their lives, and my existence and diagnosis is just one among the many they have to think about. I’ve adjusted my thinking in the past year or so, recognizing that I’m projecting my thoughts about MS on my family and old friends. Because I feel like a fraud (my symptoms are most often all invisible: pain, cognitive and emotional) I think others must think me a fraud. That is ‘my bad,’ as the kids in my classes would have said.
Because I don’t want to seek pity or empathy I continue to put up a good front, and as my therapist pointed out, why then would I expect others to show empathy? MS is nothing I ever knew anything about until going through the diagnostic tests, and even now I only know as much as any of us know, which is still based on a lack of foundation, or cause. It is not enough knowledge for me, and I continue to look for more. But that is my focus. It does not have to be everyone’s focus.
I live each day as a new day (and the joke of meeting new friends every day is actually true for me!) I have found a new me, not a ‘new normal,’ but a new me, with new limitations in my cognitive abilities and social capacity. I live by the golden rule, and keep believing that if I am empathetic and compassionate to the world, the world will be that for me. I wish all MSers some semblance of peace and acceptance that life may never be the same, but it is still a life, and there are those few who do truly love us, and that is always enough.
It’s not my wish to offend or trouble anyone by writing this post – it is not a post I would put on my open Facebook page … as I said in my former post, I don’t want to impose my thoughts on others … but I do want to share my honest journey with those who are interested, in both the journey and my observations along the way. There may be those who are struggling with their own path and might, as one poster said at the closed page, find these words reassuring.
And the good news is … I saw the endocrinologist today … and shared this good news openly on my Facebook page:
– all good news. All of my numbers are right where they ought to be, even vitamin D. Bone Density is BETTER than it was three years ago (though still in the high risk for fracture range) … the Reclast is working! Doctor K. is happy, I’m happy … I know that what I am doing for my health is the right thing for me.
This is a graphic than I ran across at Facebook. I found it very validating to read through it and reflect on my passage through the depression that came with the diagnosis of Multiple Sclerosis eight years ago. It may take some people less time to move through these stages, and it may take some people more. I can look at this image and see the low point as four years after diagnosis … just over four years clouded with nightly injections in which I had no faith and during which I resented every one of the one thousand five hundred “one size fits all” prescription for a DMD (disease modifying drug.) I was angry and disappointed with myself for having accepted that prescription. I feared that I was becoming too passive as a patient during those four years. And when I lost my classroom, my daily contact with treasured colleagues, and all that I had worked so hard for through so many years, my fears reverted to a self-defensive anger, and the tide turned.
I posted my reflection on Facebook, but have since deleted it as I think it is better left here in my blog … the blog that only the people who want to know how I am doing will go to and read, no one that doesn’t want reminders of my diagnosis will encounter it on their home page.
There are those who don’t want reminders, and I understand that … and there are those who accept updates that I make accessible here but not imposed, and I appreciate their willingness to share my story.
Here’s my analysis of how this graphic depicts my eight year passage down into depression and loss and back up again to a life worth living:
Eight years since the trials of my MS diagnosis; at year four I was so low I had to leave my profession in the classroom …
- Year one I was in total denial, disbelief and loss
- year two began with anger that turned to fear,
- year three I was quietly looking for support in my classrooms and family life,
- year four realizing that I couldn’t remain a teacher if I couldn’t be at my best anymore, and during that year my brother and my sister died within six weeks of each other. I had no strength to continue to give of myself, and reluctantly retired. I also left my neurologist, and stopped the prescribed nightly injections that had overwhelmed my emotions.
- In year five, at home and without a schedule or students and parents depending on me, I published several small books, writing it all out before I lost recall of it;
- in year six I published a few more and began helping other new authors to self publish.
- Year seven I opened my own quilt / fabric shop, opening the door to a new self-image.
- and now eight years after diagnosis, I am teaching children and adults to be comfortable with their sewing machines, and am converting antique and vintage machines to hand cranks to share with my shop customers.
- I’d say this cycle is right on, as witnessed over these past eight years. Look out, world … I’m out of the low ditch, and back on top, doing my “new best.”
Does this mean that life is hunky-dory now? By some measures, certainly. I have a strong, loving husband, two grown children living their chosen paths, two grandchildren finding their way through college in preparation for the choices ahead for them. I have replaced my chosen career, hard won and long enjoyed, for another that came about through a series of new choices and different talents. In my quilt shop I meet new people every week, and enjoy sharing my love of fabrics and colors and mechanical sewing machines. If I break even in the shop at the end of each quarter, I feel that is enough. I have my teacher pension, albeit slightly less than I’d planned due to the early medical retirement, but it is enough to pay our bills and share what we can with our family.
MS may never see a cure in my lifetime … tens of thousands of people continue to raise money for research toward a cure, but all I wish for is symptom treatments that would help those who cannot walk … I would say I am ‘blessed’ with mobility but that phrase suggests preferential blessings, and I would not assume that. My symptoms remain primarily invisible to others, but are very real to me and to those who live and work with me. That so many people in my life can accept and accomodate the shorcomings that come with the cognitive changes I experience … the forgetfulness … the relentless fatigue … the disorganization … the loss of concentration, the inability to enjoy reading … all of the things that I once saw as strengths are now challenges for me. and for those who might have depended on the old me. That I continue to try to promise things and then have to apologize for not delivering what I’d promise is a humbling realization that I haven’t yet reached a full acceptance of this new path, but I am trying. I appreciate all who understand that and continue to encourage me to offer what I can deliver, and accept what I may not really have to give.
The above graphic is more optimistic than the old “cycle” of depression, which could seem like an endless loop. I’ll go with this one, and continue to pray that what looks like a U shape does not become a “double-U.” At least not in my lifetime. And I’ll appreciate the doctors who do recognize my wish to continue to share what I can in my life, and understand my reluctance to take medications that would limit my ability to do so. I’m not a very compliant patient, but I am content with the person I am becoming. As I’ve said before, quoting Carl Rogers, “I am not perfect. But I am enough.”
I’ve had a few doctor appointments these past few weeks: I saw the dermatologist for my three month checkup, and for the first time in the almost three years that I’ve been seeing him, he found NOTHING that needed cryo-freezing, surgical-cutting or punch-biopsying. And for the first time he said we could wait FOUR months for our next visit together. That was very good news, and made me very happy. Of course, while I was checking out, his secretary advised me that, with my new “senior managed care” policy, I would need to go back to having referrals from my primary care doctor.
But my primary care doctor has changed his once singular office location, and his new arrangement is now part of a group of physicians; his new office staff apparently had none of my “other doctors’ ” records and contact information. And they quickly told me, when I called for a retroactive referral, that they could only do that once for me, and that, as my dermatologist was not a part of their physician’s group, my request for a referral might be denied, in which case, BC/BS would like not pay the dermatologist’s bill. I eplained to her that I have been seeing him for more than a few visits, and have malignant melanoma which has to be monitored frequently, and she was sympathetic and said that she would do her best to ‘get him approved.’ A few days later, I called to see if in fact the referral had been approved, and was told that it had.
A few days later, I saw the ophthalmologist, who didn’t have good news to share with me, though what he shared was offered in his usual kindly way. My right eye, in which I had optic neuritis and/or optic neuropathy eight years ago, and where a cataract continues to reside, has deteriorated to 20-200 vision (which eplains why my eyes blur more quickly when reading or typing on the computer.) He told me that, while he could recommend cataract surgery for me, he could not guarantee that it would make a difference in my visual acuity, given the nerve damage caused by MS. He said that I could choose to have elective surgery, or choose to wait it out to see whether my good eye, my left, would hold its own or also begin deteriorating; it has developed its own, small cataract. I’ll wait. And again, on checking out, I was advised that I need referrals to see him, and would I please call my primary care doctor’s office and request a retroactive one for this visit? And here is the form that you need to sign saying you’ll pay for the full visit if the referral is not sent for insurance coverage.
And so I’ve spent the past few days trying to appease the referral gods … When I called my primary care doctor’s new office again, and asked for a referral for my ophthalmologist, I fortunately was connected to another of his new office staff, who listened to my story of having MS and Optic Neuritis/Neuropathy, and sympathetically said that, though he was not in their group, she would try to get my ophthalmologist approved by the physicians’ committee for a referral, but said that she would only be able to do this once. I wondered quietly how many office workers there were in this new office …
Deciding not to take my chances, though still waiting to hear of the dermatologist and the ophthalmologists’ approvals, I called my neurologist, whom I will see in another week. I knew I would have to get her NPI number for my primary care doctor’s office staff. I had asked if my pcp couldn’t just pull it from my folder, as I’d been seeing all of these specialists for a few years now, and used to need referrals before retirement and an insurance change that, unfortunately, has changed back to needing referrals for my medicare supplemental plan. No, she said, his old patient files are in a different system and hasn’t been uploaded into their system yet, so we would be essentially starting a new file of specialists. Of course, I called too late in the day to talk with my neurologist’s receptionist, and so left a “detailed message” as requested by the automated voice recorder. Unfortunately I guess it was too detailed as I was cut off mid-way. Luckily, I have an email address for my neurologist, and so sent my request for her NPI number to be used to request a referral for her visit.
While some of this is burdensome, it is admittedly also humorous. This, of course, is because my antidepressant is working. Otherwise, I would be frantic and panicked at the inaccessibility of my primary care doctor’s comprehensive file of information on my specialists. And the other piece of good news is that, though I have already called my psychiatrist and my psychologist offices and gathered their NPI numbers, I won’t need a referral to see either of them … I thought that was true (before, when I needed referrals for other specialists) but had to carefully explain that to the second office worker to my primary care doctor’s new office staff. I’ll see both of those doctors in the next few weeks as well.
But on a note of unrequitted sadness, one of my favorite relatives passed away last night. My oldest brother in law Kip, who lost his dear wife, (my oldest sister Kay) three years go had fought leukemia unexpectedly for the past year or so, and lost the last battle last night. There is consolation in the thought that he and Kay are once again together and unseparable, and no doubt they are coordinating a 1950’s Rock and Roll Revival Upstairs. I miss them both, dearly; Kay was like my mother when I was young and our mother was having the next four children. And Kip was our go-to guy whenever our dad was at work; he was always fun, mischievous, adventurous and un-squenchable. Rest in Peace Together for Always, Kay and Kip. Love you both, forever.
Sometimes … often … I feel like I’m reading about someone else’s disease … not mine … I feel like the odd man out … cognitive issues instead of physical issues … a teacher with no short term memory, no organiation, no ability to remember names, or retrieve words … it can’t be.
I’m a teacher. I went to school forever … have a master’s and more than a hundred graduate credits beyond that. I worked so hard for so long, at the expense of my children and my husband … only to have to retire because of cognitive issues? I write books, or did.. . yet now I can’t finish a novel because I forget, just a chapter later, what I’d read a chapter before.
Does the MS society care that I had to retire because of cognitive issues? This is not a wry, ironic twist in a novel. This is real. I am a teacher. I do continue to teach … I have five students (adults and children) who are learning to quilt by machine … I have vintage sewing machines that I am restoring with Rick’s help to again be working models via people-power hand cranks and treadles … I have a fabric shop now, and meet people who like the things I like … we quilt together, and laugh together, and I am happy with them. The machines are metaphorical … coming back to life … continuing after a hundred years to do what they were created to do, and I am helping them with that. I help. It is who I am.
But still, I miss my teaching colleagues who continue to teach and so realistically have no time to spare or share because they continue to teach. I miss our dialogues. I miss their laughter and stories.
I missed my grandchildren growing up … they are in college now … and I was busy being a good teacher and a good daughter, and didn’t spend enough time with them. I am saddened by that.
I thought I was doing the right thing, taking care of my parents while continuing to parent our son, working full time and taking courses to keep climbing the salary tracks so I could retire securely… but retirement came early, earlier than I wanted, but still too late to be a strong part of my children and grandchildren’s lives … melanoma arose to join multiple sclerosis in commanding my attention and time … and doctor visits, tests, surgeries and therapies have taken over a good portion of the calendar of my life…
My husband and I did the best we could, but was it enough? We are married 45 years this month, and have a house almost paid for, and our small shop that may someday pay for itself and offer us that little bit to make up for what I lost in my pension due to early retirement…
Does anyone really see the invisible side of MS? The fatigue, the confusion, the lack of organization and direction and purpose? Or do they, as my mother always did in my teen years, see only the lethargy?
Who am I? How did I get MS? No one knows. Geography, lifestyle, genetics … infections, pollution … no one knows and so there is no ‘cure’ … just questionable meds. I’m posting this brief description of MS for March’s MS Awareness Month: Here’s the ‘maybe why’ of MS:
Hyperhidrosis from age 2 through age 55; high fever with pleurisy at age 23; recurring shingles from age 20 through 63; right eye cataract at an early age of 30; optic neuritis recognized at age 40; diagnosed with multiple sclerosis and anxiety at age 57; lost fifty pounds through diet change and exercise at age 58; took daily injections for four and a half years from age 57 through 61 which increased depression and anxiety while moderating my immune system that had for so long protected me in public school classrooms; medically-required retirement from a thirty year career of teaching at age 61 due to short term memory loss and depression-related cognitive issues; malignant melanoma, squamous and basal cell cancers at age 62 with half a dozen MOH surgeries and more than a hundred sutures; scoliosis and osteoporosis at 62.
The MS DMD injections as a ‘treatment’ is a real misnomer. The MS daily injections had to be rotated among seven body parts, with maps kept and the next week’s injection of that part had to be at least two inches away from the previous week’s. It was a regimen designed to tax my disorganized brain. ‘Call the nurse’ at the pharmaceutical company if you have any questions” was the level of medical support available. “Convenient home delivery” (though no one was home) provided ups delivery in a cooler, packed with temperature control ice packs, even during our blizzards in winter. “Don’t use it if it’s frozen” meant unpacking and inspecting every syringe that arrived in its cardboard box and deciding myself if it had frozen and thawed overnight in the shipping from Florida … “immediate post injection reactions may occur – if so, remain in a seated position” … that almost threw me off the cliff, because my reaction had been to pass out, and having asked my husband to ‘sit me up’ if a reaction occurred, he did, and I seized. Unbelievably callous ‘treatment’ by the pharmaceuticals. Thank God for my paramedic son and our local rescue squad.
Now classified as ‘benign’ relapsing remitting multiple sclerosis, without any further DMDs (disease modifying drugs) for MS. Author of eight self-published books between ages 62 and 64.
Opened my own quilt and fabric shop at age 63.
Happier without MS injections that gave such little promise and did such great harm. Advocate for healthier menu choices and lower stress lifestyle. Those who know me know I’m not a quitter. I worked hard for my education and loved my career. I love my husband and treasure every moment with him. I thank God that Rick has always been my significant other, and remains so today. Bless his patience and love.
Enjoy the video and song at this link: http://msstationwellness.com/images-of-ms-multiple-sclerosis/
I don’t talk much about MS, but I live it, everyday. I’ve written two books about it; you’ll find them for kindle at my Amazon Author page. March is MS awareness month.