Category Archives: Living with Multiple Sclerosis

What a Feeling to Pay it Forward from a Simple Goal!

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I really do not like to call attention to myself for sharing the talents and gifts I have been gifted with and then paying it forward with donations.  I believe we are to give without calling attention to ourselves.  But a goal was reached this year, despite everything, and I am extremely happy that I was able to do what I set out to do.  My goal was to make a quilt top a month for our church’s Lutheran World Relief quilt efforts.  I didn’t do it alone.  Far from it.  My secret special person, who has sent me $20 a month since I was diagnosed with an autoimmune disease four years ago, played a part in this goal.  I used most of those funds from 2014 to purchase fabric with.  My foster mother played a part in this goal.  She visited our house in November and she pieced three of the quilt tops for me.  My family played a part in this goal.  They allowed me the time to cut and sew these quilt tops together.  And with every single quilt top I pieced, I prayed for whomever and whatever was on my mind – it is always my special time to reach out to God with each stitch I made.

A goal was reached.  By me.  In the four years since my diagnosis, I have not been able to make a goal and fulfill it.  Too many distractions, too many doctor’s appointments, too many extracurricular activities, too many painful days – all of that adds up to not enough time, energy or gumption for me to deal with any goals I may have had.

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One goal down, hopefully many more to follow.


Four Year Anniversary of Living with Multiple Sclerosis

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Today marks the four year anniversary of my MS diagnosis.  You can read about my previous yearly updates here, here, and here.

It was recently pointed out to me that whenever I wrote something about my MS, the news was always worse than the previous note.  And the previous note was worse than the note before that one.

At this point, I am inclined not to say anything because I *do* realize people turn a deaf ear (or blind eye) to news that is always bad.  Frankly, I have nothing good to say about my MS, either.

This will be my last MS anniversary post and my last post regarding living my life with MS.

MS has broken me.  But it has not broken my faith nor my relationship with the man who promised to love and cherish me, in sickness and in health.  He and I will weather this storm, with the help of God and prayers from those who pray for me.  Always with the help of God.


A No Quilt Gift 50th Birthday

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I turned 50 a couple of weeks ago.  Perhaps I’ll finally be considered wise – by most everyone except my kids.  LOL  I have always preferred a very subtle and low-key birthday.  Not a big party person, more so now than ever before because of my MS blessing.

I rarely ask for much though this year I did have two requests and both of them were gifted to me.  I wanted a Boy Scout Mother’s necklace.  In the world of Boy Scouting, when your child achieves a rank advancement, the mother is also gifted with a pin for their son’s accomplishment.  I have two ribbons, one from our son’s Cub Scout advancements and one from our son’s Boy Scout advancements.  Unfortunately, the ribbons have some pretty thick clasps on the back and they put holes in my shirts.  So, I wanted a Mother’s necklace so I didn’t ruin anymore shirts.  Because I made my request late, my husband ordered it online and it should be in the mail this coming week.

The second gift request was a new wrist tape dispenser.  My youngest daughter used mine and accidentally broke it.  I love those wrist dispensers…even though the tape refills cost a lot more cost than just buying rolls of tape.  But, instead of one tape dispenser, I received two of them!  Now I can keep one in my studio and one in our wrapping paper holder.

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And then I received a very unexpected gift – one that I will use often and enjoy:

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My MIL gifted me with a chair for our deck and a cushion to go with it!  I enjoy sitting outside, watching the kids or the chickens or the dogs or even just the sunsets.  Something I would have never bought for myself but it certainly was needed and appreciated!

I felt really bad for my kids because I had a couple of very bad MS days, to the point that I couldn’t walk without assistance.  And one of those days was my birthday.

There were gifts of money and gifts of cards, too.  But, I must say…having my family together for my half-century mark was the best part of having a birthday.  Well, the brownies were right up there, too!


MS Update: I Went to the Liver Institute and All I Got from it was a Red Solo Cup

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As I alluded to on Facebook last week, I had to see a liver specialist at the Liver Institute in San Antonio.  My liver enzymes have been elevated that past two times I’ve had labs drawn and the new MS therapy the MS neurologist wants me to go on affects the liver.  So, they need my enzymes to be in the normal range and not elevated.

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My GP (general practitioner) already had me go through a liver ultrasound, adding to my gazillion other diagnoses by showing that I had a fatty liver.

This hepatologist that I saw has plans for my liver – good, bad or indifferent.

First, he had the phlebotomist draw nine vials of blood.  Owie!  He said that he wanted to test for a number of things that involved the liver, including my emzyme levels.  These were not the be-all, end-all of his plan but he needed to make sure I didn’t have some other liver issue that was causing my elevated liver enzymes.

Next comes a liver biopsy, scheduled for August 11th.  THOSE results will then be considered as the be-all, end-all of my liver situation.

And then the MS neurologist will have to decide if it’s safe for me to take the new MS therapy or not.  It could be that my fatty liver is what is causing the elevated enzymes.  If that’s the case, I should be fine to take the drug.  Or it could be that there’s something wrong with my liver…which means I could not safely take this last-ditch effort at the MS therapy.

Thus far, it’s been quite a year – I have been on NO MS therapy since January.  Am wondering what (if any) damage has been done to my brain thus far, without a therapy.  I know that with the four failed MS therapies I have already been on, there continued to be lesions in my brain.  I also know, based on the last MRI, that the lesion that sent me to the hospital on Christmas day in 2010 has finished desalinating but the white spot it left behind (dead brain matter) continues to grow bigger.  And since it’s in my left cerebellum, I continue to have problems with the right side of my body…with dizziness…and with my balance.

I fell again over the weekend.  No warning.  Just fell.  And it woke three of my daughters up as it was late at night.  I am fine from the fall, only a little rug burn on one knee.  Balance issues are a big deal these days – I fall a lot.  No fun for me and it breaks my heart that my children have to see me and/or help me up when I fall.

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Guess we’re still in a wait-and-see position.  So, I shall wait and see what the liver results will be.  But, in the meantime – I do have this red solo cup to remind me of my visit to the Liver Institute!

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