Category Archives: Living with Multiple Sclerosis

Proud Girl Scout Mom

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I have been a Girl Scout mom for 12 years and a trained Girl Scout leader for 10 of those years.  I have worked with our three daughters, as their leader, through field trips, camping fun, cookie sales and awards. 

This year marks the end of my Girl Scout leader volunteer activities.  My MS has made it near-impossible for me to keep up with and lead a group of girls the way I was trained (and learned how to train others) to help them grow into young ladies with leadership skills.  Not to mention that I am only trained to lead girls who are Daisy’s, Brownies and Juniors … and my three daughters will soon be beyond those younger age-levels.

This year, two of my daughters have achieved very special milestones, and earned their ‘precious metal’ awards.

Our youngest daughter earned her Girl Scout Bronze Award.  She worked with a local church and church members to help set up a room with clothing and small appliances for the needy.  To add to the room, she had her own special corner where she bagged up all of the small children books that we had at our house that weren’t written in (such as special gifts from someone) and also cleaned out her bedroom and added a box of toys to her AGAPE offerings for her corner.  She spent one Saturday when the AGAPE room was opened, helping the wonderful woman who started the mission-style work help folks pick out and carry the things they needed to their automobiles.  She also helped organize back-to-school packs to give to people who needed assistance with back-to-school supplies.  She did an amazing job and was extremely organized in her volunteer work. 

Our middle daughter was working toward her Silver Award this summer.  I went with her troop leader and four other girls sometime last year to a Silver Award workshop, to learn about what earning their Silver Award entailed.  We thought we were ahead of the game.  She had already decided who she wanted to work with to earn her Silver Award, she just had to get the prerequisites out of the way.  Unfortunately, DD#2 was registered as a Cadette for two years but was only in a troop this past year (we could not find a troop close enough to home that she wanted to be with the first year).  During the normal flow of a troop, a girl spends their first year going through their Journey (a Girl Scout book that has badges they earn) and the second year working toward their ‘precious metal’ award.  Once DD#2 was in this troop, we found out the girls in that troop had already completed their Journey, so my mother-in-law spent a month with our daughter to get her through her Journey during and after their holiday break last year.  Then the troop did a lot of Girl Scout things, such as earning their PA (Personal Assistant) pins, putting on a lock-in for the other troops in our Service Unit, doing volunteer work and what-have-you.  They did not spend a single moment working on their Silver Awards. 

I really wasn’t worried because I figured we had all summer to earn her award since her Cadette registration ran until September 30th.  That was our plan.

Boy, was I wrong!!!  Once I contacted the volunteer in charge of precious metals, she told me DD#2 should have earned her award BEFORE the LAST DAY of eighth grade.   The day after eighth grade, she was considered a ninth grader and ready to be a Senior Girl Scout. 

<gulp>

After asking what we could do, I was informed that if our daughter wrote to her for special permission, the presious metals chair could make an exception to the rule – as long as our daughter completed the requirements for her Silver Award BEFORE the first day of ninth grade.  This was THREE WEEKS before school started…and wouldn’t you know, I had planned to be out of town for two of those three weeks.

<double-gulp>

She waded through the mounds of paperwork and requirements, forms and suggestions and came up with a plan.  She would make organic dog treats for the Utopia Animal Rescue Ranch that’s just down the road from our house.  But, one question in the requirements really had her stumped – “was this project sustainable and if not, what can you do to make it sustainable?”  Obviously, dog treats are only good until you feed them to the dog – not so sustainable.  So, she and her father – bless his heart, he has been a Boy Scout since he was in the first grade and is now a Scoutmaster – but, he now had to change hats and be her home advisor to earn this award.  They decided in order to make it sustainable, she would give a cooking lesson at the church that sponsors our troop to show others how to make the dog treats.  That way, it would involve our community (making it sustainable) and others could help out the Utopia Animal Rescue Ranch for minimal time and expense.  She got the approval from the precious metals chairperson and was on her way!

50+ hours and over 1300+ dog treats later, she completed her requirements just in the nick of time.  She has one more letter she is waiting on and then she can send her paperwork to our local Girl Scout Council – and we have an exit phone interview with the precious metals committee on September 27th.  If the committee approves of her completed project, she will have earned her Silver Award.

When we delivered another batch of organic dog treats to the Utopia Animal Rescue Ranch this evening, DD#2 let out a big whoosh of air as we were leaving.  It was done.  She has one letter to wait for and then she can send her paperwork on.  BUT, she was already plotting about what she could do with the Utopia Animal Rescue Ranch in a couple of years to earn her Girl Scout Gold Award!  🙂

One of the things we made sure to do before leaving was to honor the Girl Scout tradition of pinning Cousin Nancy.  DD#2 explained that she was putting both of the pins we had brought along on Nancy’s shirt upside down.  The tradition in Girl Scouts is that once you do a good deed, you may turn them right-side up.  Obvisouly, with rescuing dogs that would otherwise be euthanized – Cousin Nancy does good deeds on a daily basis!  It shouldn’t take too long for her to get to wear her pins right-side up!

If you’re interested, Cousin Nancy wrote about our daughter on her blog:

I am a now a Proud Girl Scout mom of THREE daughters who earned their Bronze Award, and doubly blessed this year that I have one daughter who earned her Silver Award.  My smile is from my heart and I know that all of my children have been taught how to give to others in any way possible – and that being involved in Girl Scouts has been part of the reason they have this ability to reach out and grow….as young women and future leaders.

Being Left Out of Life

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It is very true that my husband and I are loners.  We love each other and we love our kids and a lot of things we do are just for us – family times together, with memories to last a lifetime.  And I will admit to not attending some events in the last 18 months because it exacerbates my multiple sclerosis symptoms.  Most of these were parties or family reunions – but everyone who was attending knew why I was not there and my kids and husband would go and explain my absence, if necessary.  Funerals do not count, in my book.  I attend very few funerals for personal reasons.

But, I have attended some functions that we deemed important enough and I would just deal with the MS symptoms after we got home.  We’ve been to a number of graduation parties and a few weddings.  After a couple of days of rest and relaxation, I am back to my normal.  No, it’s not fun recovering … but it is ever-so important to us that people know we care enough to attend their milestones and celebrate with them.

I have one friend from when I was in the fourth grade and I made a special point to surprise her by going to see her on her birthday last year.  I have foster parents who have known me since I lived with them in the late 1970s.  I have two special high school friends with whom I still converse with and I have brothers and sista cousins* and an aunt and uncle who finished raising me and many other friends and family that I have known since I was in my teens who I am close to.  Or thought I was.  Not to mention all of the family on my husband’s side of our family tree.

But, I have found that for MANY years, I am being left out of most of their lives.  I do know that since my MS diagnosis, I am treated distantly – and truly appreciate that consideration of asking me before expecting my attendance.  But, I went to my SIL’s wedding and dinner last month and was happy to see everyone and talk to them.  It was important to our family to be there, regardless of how long it took me to recover from such an event.

However, that doesn’t explain being left out of the last 30 years of my friend’s and family’s lives, even though they are always thought of on my end.  Obviously, there’s something in my personality that means I’m not welcome or I am not wanted or I am not good enough to participate with them.  I have no idea why I am not thought of as more than just a distant whatever to people.  Perhaps it’s because I am honest and direct in my communications – I don’t mince words and I tell it like it is.  Some people may be offended by that.  Maybe it’s because I have so many kids and we are a drain on folks?  Maybe they do not care for my husband?  Or maybe they know that I will forgive them and move forward as if nothing ever happened? 

Whatever their reasons and excuses – let me be very clear.  IT.  HURTS.  ME.  Many times IT.  HURTS.  MY.  CHILDREN.

I am bringing this topic up today because a friend of mine from high school’s son was just married this past weekend.  My family was not invited.  My friend made a joke that she’s just absent-minded and even forgot to invite her own sister.  When I mentioned it, she said she didn’t want me to feel obligated to come.  But just two or three weeks ago, I specifically asked her about her son’s wedding colors so I could make them a wedding quilt.

When we were in high school, I worked for her parents for three or four years.  I was so close to her parents that when they would drive through any state they knew I lived in, they would call me and we would go out for dinner or pie so they could catch me up on their lives and hear about mine.  And when I went to visit my aunt and uncle, I always called her folks or her dad and we would meet up for breakfast on our way out of town.  I made baby quilts for each of this friend’s baby’s when she had kids.  I was invited to be in my friend’s wedding but I was a broke college student living three states away and was unable to afford to attend, though I am sure I sent a card and was very humbled that she had asked me to stand up with her.  When my friend’s mother passed away, I was on vacation with my family but my sista cousin* heard about her passing and called me, and I sent flowers and my sympathy about their loss of a great lady and mother.  For a couple of summers in recent years, I have stopped and spent the night at this friend’s house while going to see family or friends, enjoying her family and catching up as old friends do.  Last year, she even kept my two older daughter’s for a week while I went to visit my foster parents and they all said they had a fabulous time.

She is not the only friend I have who has treated me this way, but she is the most recent, who tore another little piece of my heart out. 

And it affected me deeply, probably because some of my husband’s family was just here for the Labor Day weekend and not a single one of them took five minutes out of their rest, relaxation and fun to come say howdy to me.  Especially our niece, who has always made a point to come to see me when she’s here.  I can talk to one or two people at a time and not have too many MS symptoms – it’s the crowds, noise and chaos that send me to my knees.

My aunt once told me that I when I was friends with someone, I was loyal to the end with them.  If they hurt me, I would deal with it in my own way, forgive them and move forward.  I never realized that about myself but I saw it.  Someone would beat me up emotionally but then I would give it to God and go right back for more.  In some cases, this was a good move…and in some cases, it was bad for me. 

I have one brother who has only come to see me where I lived (and both times way before I was married or had kids) twice.  My other brother the same, though he has met my children so his last visit was not so long ago.  People who I care about will come within 30 miles of where we live and then say something after the fact about how close they were to me. 

I guess what I don’t get is why?  Do I have too high of expectations?  Do I only show a little love when the other person expects more?  Am I such a small blip in a person’s life that I am inconsequential to others?  Is it selfishness on their part?  Is it that they do not feel for me as I feel for them?  Is it selfishness on my part that I would like to mean more than I obviously am to them?

I’m sure with this blog post, I will not find the answers to these questions.  But, I can say that in all honesty, I am tired of being hurt over such things.  I am sure it will continue, without a doubt.  But, at some point, my quilted heart will no longer be so accepting of being trampled on.  Being ripped apart, one seam at a time. 

[* sista cousins are two cousins of mine, daughters of my aunt and uncle who finished raising me.  I am closer to them than cousins and since I lived there, we were almost like sisters.]

Blogcation

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To my faithful readers, please note that I have taken a blogging vacation this week.  I needed some Tammy Time and our plates have been full.  My apologies if you missed me – though I thank you for checking in on me nonetheless!

On a personal front, my disability appeal was approved without so much as a request from those in the know to have any other doctors or medical professionals evaluate me.  With my original filing for disability, they requested two different doctor’s evaluations.  I filed my last paperwork less than two weeks before they approved the disability appeal.  I would say even though the speed of some government agencies is slower than molasses, my husband and I were dumbfounded and speechless when I received such a quick reply and approval.  Not only was that decision made quickly, within two days of receiving the approval letter, my lovely Social Security advocate in the office nearest to our home called me on a Saturday to interview me over the phone about the monetary benefits.  WOW.  I think I need to buy that woman some chocolates!

I am still having trouble swallowing that lump in my throat that my MS has affected me to the point of needing disability – but I am eternally grateful that I was approved and our family will benefit because of it.

Once I find a camera cord that will work with my camera, I will have some fun quilt-related photos to share with you next week.  I’ve been more busy quilting than usual and I’m excited to share some of my quilt accomplishments with you!

For now, enjoy your weekend!  I hope to be back in a blogging state of mind next week!

Tote Bag for a Cause

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I read a flyer on Facebook about a first cousin who had optic neuritis and was told by his physicians he would go blind within six months.  They were having a motorcycle rally and live auction to help defray the costs of his medical expenses and to help him get a service dog.  This struck me as interesting – not only that I hadn’t seen nor heard much about this cousin in years but also, optic neuritis is a common symptom of someone with multiple sclerosis.  I am checked regularly by an ophthalmologist and thus far do not have any symptoms of optic neuritis.  I asked his wife if he has MS and she said the doctors said he has a “slight case” of it.  I am totally clueless as to what that means, but research indicates MS is not genetic – though, I have seen it in a number of families so it makes me (and this cousin) wonder if that is truly the case. 

I am not close to this cousin and haven’t seen him since probably 1976 at my dad’s funeral.  I do visit with his sister every now and again on Facebook, but again, it’s been a very long time since I’ve seen her.  When we were little kids in elementary school, my dad’s oldest brother and his wife lived on a farm in Iowa.  Although many of our relatives on Dad’s side of the family got together on the weekends at Grandma’s house, Uncle Charles and his family didn’t participate.  So, every couple of months, Dad would load all of us into the car and we’d head over to Uncle Charles’ farm so he could spend time with his brother and we got to play with their six kids.  The kids were all older than us (probably late teens while we were in elementary school) but I do remember this tomboy enjoying playing with their five boys on their farm.

So, I volunteered to make a “Crown Royal” quilted tote bag for the live auction out of old “Crown Royal” bags that I had saved from my pre-marriage, pre-kid bartender days:

It will be interesting to follow along with this cousin to see how his “slight case” of MS compares to mine.  Obviously, he has different symptoms than I do at this point.  I pray that I do not end up with optic neuritis, of course.  And I also pray that he doesn’t have to deal with most of the symptoms that I deal with on a daily basis. 

I feel as if I’ve done something worthwhile for a disease that is robbing me of my brain cells and robbing a cousin of his eyesight.  It’s not much but I forced myself to make it despite MS rearing its ugly head by making me dizzy, giving me a migraine and having to take two days to complete this project when before I had MS I would have whipped this up in an hour or so. 

What causes do you support with your quilting?

Quilting Milestone

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I did it!  I have been struggling with quilting because it makes me terribly dizzy to work throughout my sewing room triangle – sewing machine to cutting table to ironing board.  I have only completed ONE quilt since my MS diagnosis, and I knew I needed to get this next one completed for a cousin’s son.  I gave him the quilt top when he graduated from high school last year, but I didn’t have it quilted or the binding put on.  I finally received it from my quilter in October, but this MS has been a struggle to deal with ever since.  BUT, I decided it was now or never, and I forced myself to complete this (very late) graduation quilt by putting the binding on it yesterday.

“Graduate’s Guitar Hero”

I have one more very late graduation quilt to bind from last year, but I will once again force myself to just get it done – especially since I have six more quilts returning to me this week from my quilter!

As for the dizziness, it lasted most of yesterday and today, but there are just times you have to deal with the side effects of MS and forge forward.  I’m SO very glad I did!