Balancing Happy Relief and Admitted Losses

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.

The Stages of Grief in a new Graphic Illustration

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.”

 

 

 

 

Some Good and Some Bad, Some Happy and Some Sad

datebookI’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.

Kay and Kip, with their first grandchild.

Kay and Kip, with their first grandchild.

lily

Reading the MS Headlines, from the Inside Out…

??????????????????????????????????????Just some rambling thoughts on a day that has seen some productivity and yet continuing lethargy…

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?

I’m a medically-retired public school teacher. I was diagnosed with ‘benign’ RRMS eight years ago, at the age of 57, after our parents had passed and there was time to see a doctor about my fatigue and vision.  I worked an additional four years after the diagnosis, but had planned to work at least six, to reach my maximum possible pension. Unfortunately, despite daily injections, my cognitive symptoms progressed, and bloomed into depression. When I was unable to recognize one of my students as he stood in front of my desk asking for a make up test, I realized that it had gone too far.
I knew I needed help, but help was not easy to arrange. It was taking me longer to correct my students’ essays, and weekends were not long enough. What I once could accomplish in twelve  hours was taking eighteen hours. I wanted to hire someone privately to do the record keeping and grading so that I could focus on teaching my students. But after not recognizing my student,  I met with my principal and teammates, and agreed with their suggestion that it was time to take “early retirement.” I had to trust their sugggestion, as I had just undergone a change in antidepressant dosage and was not supposed to make significant decisions until the doctor and I were sure the dose was right. But the team was concerned about my well being, and that of my students. I thought of them as my friends. I still do. And so I retired. 
I don’t think that the MS societies that raise funding for research and DMD improvements have anything to offer patients with ‘benign’ RRMS. My cognitive symptoms continue to progress. I have a Master’s Degree in special education, and more than a hundred other graduate credits beyond that. My education has allowed me to help those who, as school children, experience learning disabilities … slow processing speed, short term memory loss, distractibility, lack of organization, confusion, loss of sense of direction, and being easily confused by multi-step directions.  I taught for thirty years, and helped many students and their parents understand the difficulties and find appropriate compensatory strategies for them. 
And now, I share those disabilities. I know that it will take me much longer to learn and keep new information, and I do my best to stay on track when I take on a task, be it housekeeping, quilting or shop-keeping. I no longer can read long novels – it brings me no pleasure to read and re-read chapter 1, only to have forgotten it when I read chapter 2.
My antidepressant is working well enough that I now, at 65 years of age, have my own quilt and fabric shop, and I enjoy meeting quilters who stop by to share questions. I teach elementary age students to machine quilt. And I am content with my life as it is.
I would be lost without my husband – he is my soulmate – we have been married for forty-five years now, and are enjoying our happily ever after years here at home. We will never have the full pension I worked so hard to provide when his manufacturing profession shut down; but we know how fortunate we are to be together here in our home.
I wish it were easier to admit that we need help with things that are bigger than we can handle together. My husband and I do the best we can, and we accept that it has to be enough. It is not what we envisioned when we were young parents. We once thought we, like our parents, would be doting grandparents. But we were, instead, doting parents to our parents. We had to make a choice, and we made the one that we thought we would not regret, given limited time with one generation racing the clock with the other generation. If faced with that timing again, we would choose the same. It was the only humane choice we could make. 
We had always been the helpers. Now we are weakened by disease and age. We still do what we can, and try to earn a little extra so that we can occasionally hire people to help us do what we cannot do ourselves. Our shops help with that. And our lifestyle helps with that. We have abandoned our long-held dream of traveling in retirement … and we appreciate that we are blessed to be in our home, together… Happily ever after, with whoever chooses to drop by and share our time.
Be well, all. And be happy. It is a choice we all can make. 

Saving a Facebook post I’d shared for MS Awareness Month

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Just turned 65 … loving my new career in the quilt shop as much as I loved my classrooms. Quilters are wonderful company!

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.

Spring Appproaches Hesitantly

It snowed all day again today, though nothing more than a dusting accumulated. This winter is stubbornly hanging on … the snow piles are shrinking faster now, and the fall debris and winter damage will soon be exposed and looking for attention. The ice dams over the front door brought down the 24 foot gutter, saving us the expense of having to do that this spring, if spring ever comes. Some touch up painting will be needed to hide the scars left behind.stock-photo-romantic-and-nostalgic-photograph-of-a-girl-silhouette-staring-at-the-winter-sky-47175091

Rick and I have both had the ‘whatever it is’ that has been going around this past month – some say flu, some say cough … both of us say ‘enough.’ We both saw the doctor earlier this week and were advised that it may take another two weeks for this to clear out. He gave us each a prescription of amoxicillin and a cough supressant with pain relief; I stopped the ‘cillin after a few days because it was not settling well.

This morning, in the beautifully-falling redundant snow, we drove to the local hospital where I had an ultrasound, trying again to determine whether my lungs were clear, or whether the pain in my chest was due to pneumonia. The technician, of course, couldn’t tell me anything, but said that the radiologist would read the films today and get in touch with my doctor on Monday.

Next week I’ll see the psychologist again, and the psychiatrist who oversees my meds. And then within another week, we’ll be back to the dermatologist for what must be round 25 or so of skin checks, freezing and/or more biopsies.

We closed the shops this past week, and it occurred to me that this is the first week since my retirement four years ago that we haven’t been open for at least a few days. In a fleeting moment, disregarding the pain both of us have with this dry, deep cough, I wished we could go somewhere warm for a rest. I enjoy the warmer weather in the quilt shop, but haven’t been out there for more than a few minutes each time a customer stops by … my fingers are so very cold when cutting fabric in the shop with the heater only turned on sporadically … I’m thinking that next winter we may well close the shop from January through March and take some time to go somewhere for a bit.

I remain very tired, though not depressed. Just fatigue, which is a given with MS. More snow ahead for this week, and then perhaps some moderate winter into spring temperatures next weekend. Or more snow … time will tell.

Too Much Snow, All of a Sudden

ice jams and high drifts on the ground and the roof.

ice jams and high drifts on the ground and the roof.

We had almost no snow through December and most of January. And then, at the very end of January, the blizzard started.  The meteorologist reported  the snows as four separate storms, but the governor of our state said he considers the damage and expense as one three week event, and will seek federal emergency funds on that basis. In short (and how we all wish it had been short) we had more than seven feet of snow in twenty-one days. To add to the experience, we’ve had only one day above twenty-nine degrees Fahrenheit, which means that all the snow is still with us … in tall piles on the sides of roads and driveways, on roof tops accompanied with ice jams and thick, heavy icicles.

Needless to day, we haven’t spent any time enjoying the outdoors. I have not been outdoors for more than a few minutes dashing from the house to the car to the destination and then back again. Thankfully, I’ve had no doctor visits this month. A few community evening meetings were cancelled due to weather. A few quilting lessons were cancelled as well. There have been nearly no customers in our shops, despite Rick’s daily hours of snow-blowing and salt-spreading. The potholes in the roads are challenging our five year old tires, and we had to replace the two front tires to get our inspection sticker, and will buy two more this summer.

I have been averaging 10 to 12 hours of “sleep” during this cold spell, and have been far less productive that I normally would be when housebound. My sleep is not a deep sleep; consequently, I am still very fatigued when I get up late in the morning. I have spent far too many hours on the couch for the past month. It has lessened the incidents of pain, because I am not using my arms (sewing at the table and sewing machine causes as much pain as does carrying anything “more than a pound of butter,” ) and just ten minutes of machine sewing is most often followed by at least twenty minutes of sitting on the couch with my arms in my lap, or here on the keyboard of the laptop computer. And sometimes those twenty necessary minutes turn in to an hour or two, as I am distracted by emails and Facebook posts and forget that I was working on a quilt. Work that might normally take me a weekend is now taking me several weeks to finish. I’m not happy with that. And my goal with the quilt shop is to be happy with it.

Things have to improve soon. They say this has been an historic, record-breaking snow event. Enough is enough. The thrill of a snow day home from school has disappeared, as every day is a day home. tax

I am looking forward to spring, and praying we don’t leap into a hot, oppressive summer instead. What we are facing now is the reconciliation of finances, and filing our tax return.  Asking my angels to help those synapses to fire often enough to get it all done.

Quick Update January 2015

Three doctor visits this week: first, the psychiatrist, who agrees that the meds are working and that I will continue with the current prescription for as long as they do.

After lunch on the same day, I saw the dermatologist this past week; as usual, he found more to address. One spot on my face, treated with cryosurgery. Today, five days later and one night of the prescribed cream, and the skin is healing over. Good stuff, that cream.

And mid-week, I saw the therapist and we agreed that things are going well and we can wait until spring for our next session.

The quilt shop is very quiet this month; few walk in customers, and as few telephone/online customers. Rick says that they are probably all busy quilting for the cold months. I know I am. I still have three quilt orders to fill before the winter ends … and the library’s third annual quilt show is coming up in two weeks’ time.  Better get busy!

 

 

Realizing and Reacting, Reconciling and Reaching

The Spiritual Side of MS is a brief blog that I invite you to read before reading this entry; it caught my attention today on Facebook. In the opening paragraphs, the author refers to people who say that MS, or Parkinson’s, or other chronic debilitating disease has brought an appreciation of life to them, a better sense of compassion, and of love.

I appreciate the author sharing this personal perspective ; I cannot say that mine is in alignment with his. It is very difficult for me to separate out the diagnosis from the other events that took place during that time period in my life.  It is challenging to look back through the lens of time and interpret those past perceptions from the different perspective of the present.

Just as our national expression of grief around the terrorist attacks of 9/11/2001 coincided with the coma that foretold my father’s impending death and my own personal grief and distraction during those days, the diagnosis of multiple sclerosis followed years of elder care in my life … and the decade leading up to that diagnosis was one filled with not only physical mysteries and cognitive gaps, but also confused and conflicting responsibilities and loyalties.

To teach is to learn  to partner and to parent, at many levels. To parent is to partner and to learn and teach as well. To partner is to learn to both lead and follow as circumstances warrant. Of this, I am certain. I became a partner when I was most alone in my life, in the middle of a large family without a clear purpose or an expected identity, and I love the man who taught me to be me. I became a parent twice in life, during different times of my life,with the same partner but with distinctly different children in distinctly different times, and I loved both of them equally and yet differently. I became a teacher the hard way, and I loved who I became; I could not be a teacher without first having been the partner and the parent that my life led me to be.

I would not call my thoughts here spiritual, but rather cognitive and reflective. Having spent years studying childhood development and assessing progression through milestones in such development, it was with recognition that I watched my parents experiencing  neurological conditions of Parkinson’s and Alzheimer’s  dementia, regressing back through those hard-won levels.  And it was with realization that I would  soon need to reconcile with my own beginning regression that seemed to begin as theirs came to an end.

MS has brought me physical changes: age might have brought some of them to me on its own, but in partnership with MS they seem to happen more swiftly.  I have no memory for people’s names or faces, other than those I have known for years or more recently have had frequent personal contact.  I have less sense of the passage of time now and little to no memory of recent events in a logical sequence. There are days when I awaken from a dream and wonder what season it is now, and what year it has become, and whether I am still a teacher and late for school.The changes in the structure of my brain include lesions, or scars left where myelin has been removed from my nerve axons, and ‘black holes’ have developed where lesions were once active. My sense of smell is near to nonexistent, and with it taste has diminished as well. I can rarely make a quick decision, even on the simplest level, such as what to eat, or whether I am hungry or not. I can feel very cold and shiver when my skin surface feels warm to others, and feel overheated when my skin  surface is cold to the touch. I can spend an entire 12 hour day without needing to go to the rest room at all, and the next day need to eliminate water almost every hour on the hour. I can walk three miles or more when called to do so for a fundraising event, and the next day feel like the earth’s surface is embedded with magnets holding me in place and preventing almost any horizontal movement. I can receive a painful injection and not feel the pain until a moment or two later, because my nerves carry messages erratically due to the damage done by the lesions.

My formal diagnosis of MS did not come until after my parents had passed away. I am grateful that I never had to explain MS to them, though had they known, more of who I was might have been understood. I spent an unremarkable childhood and early adolescence in the city, and finished high school and began college in a small town setting. I did not fulfill my expected family role as a high school graduate who went to work full time and helped support younger sisters and brother, but rather was allowed to break the female mold in my family by attending a two year college before working and earning.  My housekeeping skills were never to meet the expected standard as my energy was more often dedicated to athletics and academic study. and while this difference was tolerated, it was never respected by my mother or her friends. I was different, and did not know why I was different. My setting was radically different than what I had been raised to expect, and so those expectations were never realized … the differences between my career goals and my older sisters’ family-centered goals were never discussed. MS was developing as I struggled with unfamiliar expectations and unrealized recognition. But the label would not appear until much later.

Retired now, and having time to cognitively try to process and understand the results of those dramatic differences  causes a great deal of reflection and realization. I did, as the blogger aforementioned, realize my own capacity for compassion for others, but it was during the years of eldercare, not during my own diagnostic period. With sixteen years between our two only children, it was during our second passage of parenting in a different set of decades than our first passage that I recognized my capacity for compassion in different circumstances … and different societal norms for both parents and their children.   I have realized  retroactively that the differences between me and the others brought up by the same parents are differences of age, of setting, and of societal change. I have accepted that, had I been born two months earlier I would be a child of the forties and not of the fifties and would have been accepted as part of the older rather than the younger half of the family.  Had I remained in the city in my sister and brother-in-law’s care to finish the last two years of high school with the nuns I would never have met the public school guidance counselor who would advocate a different role than my two older sisters had fulfilled, and I might have experienced more acceptance than I did as the established mold-breaker in the family.

And I realize that, if those life changes had not occurred, I would have had a different future, and now present. I would not have found and married the love of my life; I would not have had the children and grandchildren that I have and love dearly; that I might not have lived locally  to take on the responsibility for my parents daily needs, and my in-laws need for a family. I may never have taught, nor owned my own quilt shop in retirement. I would still have been diagnosed with MS, and perhaps, in the absence of all that had built a recognition of my capacity for compassion, MS would have brought me to that realization. Family relationships would have been so very different for me. I would not be who I am. I would not be the different one.

And I am happy with who I am. I am loved and love those who love me. And I realize, with compassion what I can no longer be –  a teacher with a good memory and organizational skills and students who benefit from my work.  I realize with compassion what I will one day be, the lady in the chair with no memory, no talent and no skills to share, but a sense of having been loved, and loving. I know that I will still feel happiness as my parents felt happiness in the absence of the difficult memories and challenges.  The black holes of MS will see to that, if age does not first.

Summer is gone, thankfully. Fall is here, and the beat goes on.

I did have an 1969321_794692657240346_4555314282901753713_nappointment with my dermatologist last month – and again this past week … At my September three month checkup/skin scan, he decided to re-biopsy my left forearm melanoma scar, which has been producing new brown spots very similar to the original innocent-looking tea-stains that turned out to be malignant melanoma. This is the third time the site has been biopsied … twice since the surgery and many sutures two years ago. And again, pre-cancer a-typical cells were found, and removed by biopsy. He scraped deeper this time, because the last biopsy suggested some recurrence. He succeeded in reach clear borders on this visit, which is good.

But the deeper scraping resulted in continual bleeding. At the end of the second week after biopsy, I called his office to tell them that it was still bleeding each time I changed the dressing. He was on vacation, but his partner reasssured me that it might take a bit longer than usual for a deeper biopsy to heal, and to continue changing it daily for another week and then call or come in.

I went in this past week, as it was still bleeding and approaching four weeks. My doctor was back, and treated it with a brown liquid that I assume was iodine as he warned me that it might sting … it didn’t while he was dabbing it on, but after he covered it with a tefla pad WOW did it sting — but just for a moment. He said I have the strangest delayed reaction to things, and we laughed.

He also prescribed a compounded medication. I had been using Aquaphor as usual, but this, he said, would be more the consistency of a toothpaste, and would contain the same medication that the treatment for stomach ulcers contains. It, like the aquaphor, is applied at night and covered with a dressing.

He did tell me that some insurance policies balk at using a compounding pharmacy; I told him that CVS was the pharmacy recommended by our insurance (formerly GIC but now again BC/BS.)  We went to the pharmacy he suggested in Newton, and paid a $50 copay for the ointment. They said it would come in the mail to our home.

 

arm biopsy site oct 2014

The medication arrived via the mail two days later, and I’ve been using it now for three nights, and it has dramatically SLOWED the bleeding, and the skin around the wound looks much better, but the site is not yet what I’d called fully healed … the dressing continues to have fresh blood stains on it each night when I change it. However,  the open area has narrowed to about 1/4″ in width, where last week it was the size of a nickel.

And so the beat goes on. The cooler weather is much better for the MS symptoms … summer was humid and hot and I was not at my best on many days because of it. But my thinking is again clear and I am getting things done for the quilt shop.

Wishing all of you a happy, healthy autumn. Be well.

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