MS Flare-Up

We believe I’m having a multiple sclerosis flare-up/exacerbation/relapse caused by another demyelinating lesion in my brain.  I am not a happy camper about this, but then no one who has to deal with MS (or any other lifelong disease) would wish this on themselves or others either.  I hate writing “downer” posts but I think it’s important to document what is happening for myself and for any others who may be going through the same thing.

To be clear, the “we” in this post is my husband and myself.  He now has to handle all of my medical scheduling and documentation because it is too much for me – too much stress, to much for my memory and too much work – and I just flat cannot deal with it.

My daily Copaxone syringes ran out in April.  We had an appointment with the MS neurologist to renew the script and thought everything we were supposed to do was taken care of.  We even received a courtesy call two working days before my appointment reminding us of the appointment.  THEN, the DAY BEFORE my appointment, the neurologist’s office called and said we had to have a referral from Medicaid.  What?  This neurology office doesn’t even accept Medicaid payments, so why do I need a referral???  They said if we didn’t have a referral, we had to pay cash for the visit.  THAT made no sense either, since we were already placed on the “cannot pay” (due to low income) list by this doctor, who found out that her low income patients were using their funds to pay for her expertise and not for their medications.  We thought that this was convoluted, but called our primary care physician (PCP) for the referral – which they told us would NOT happen overnight and we needed to cancel our appointment.

My husband called the neurologist’s nurse daily, sometimes two to three times daily, to get the prescription renewed.  Throughout the last year, that nurse ALWAYS returned our calls – but for the two weeks prior to my medications running out, she refused to call us back.  Nothing.  Nada.  Even his pleas for help went unanswered – and if you know my husband, you would know that pleas are not his norm.

Finally, the wonderful caseworker at Shared Solutions, who had been following my first year of taking the Copaxone very closely, called.  My husband explained the problem and although there was obvious concern in her voice, she said for him not to worry about it, she would take care of it.  WOW, someone who actually listened, returned telephone calls and followed through with her statements was a welcome relief.  And the case worker made it all happen – she jumped through the doctor’s hoops for renewal, she jumped through the Medicaid hoops for renewal and she got my meds renewed.

But, not before I had been out of them for two weeks.

Two weeks is a lifetime when you have a disease that you know is a ticking timb bomb in your brain. 

And what chapped my hiney more than anything was when we finally did get our referral to the neurologist, she pushed us off on her physician’s assistant (PA)!  Mind you, we really like the PA – she is like us insofar that she pulls no punches with what she says, she answers all of our questions and thus far, has returned all of my telephone calls.  But, when you’ve drivin 80 miles to see a specialist, you darned well EXPECT to see the specialist.  We told her we had been out of the Copaxone for two continuous weeks and she immediately jumped up and went and got me a three-week supply from their office.  IF the neurologist’s nurse had called us back, perhaps they could have done the same BEFORE my script ran out instead of after!!!  And before you ask, we did not know if the PA could renew my prescription – hence the reason we didn’t call her in the first place!

This is our first year of dealing with all of these medications and doctors – if they do not tell you what you need to do, then how do you know??? 

(As an aside, we recently found out that at some point, the neurologist had put in my chart that I was not to be prescribed any triptans for my migraines, because of the family vascular disease on my dad’s side – brain aneurysms took both his life and my older brother’s lives while they were in their 30s.  The neurologist made NOTE of it in the chart, but NEVER told us that.  Here I had my PCP, the neurologist and her PA trying to medicate the migraines away and I could have, frankly, caused my own aneurysm if the PA had not told us of this VERY.  IMPORTANT.  NOTE. that was made at some point in the past but the neurologist did not inform us of her chart notation.)

Also of note is that this medication can take up to six months to do its thing.  I don’t know (or cannot remember) all of the ins-and-outs of the medicine, but it can take six months to work as it is supposed to – and what it is supposed to do is to lower the rate of your recurring brain lesions.  So, I didn’t just have two weeks without the medication, my six month countdown also returns.  For example, we know I had three new non-demyelinating lesions in my brain over the past year per a January 2012 MRI.  These probably occurred before I was placed on the medication or in that six-month grace period before the medication can actually begin working.  Since they were non-demyelinating, the neurologist was not concerned with them.  In MS, most of the time you are treating the symptoms of active demyelinating lesions on a regular basis while trying to find a medication that works to slow down the lesion process.  Unlike some cancers, MS is not curable.  I will live with it for the rest of my life….and pray that on a long-term basis, we keep the number of demyelinating lesions at bay.

Anyway, back to the original issue – the relapse in my MS.  It started with foot cramps, which frankly were just weird because I have no feeling in my feet from the ankles down, but I could definitely feel these painful muscle spasms in my feet.  Then, after about a week, they moved up to the muscles in my legs.  Luckily, this is a common occurrance in MS patients (so we found out from our own research) so we have been working with the PA to medicate them away.  As of Monday, they had disappeared from my legs but I had them nearly daily in my feet.  The PA was happy in that she felt we had the spasms “moving south” and we just needed to up the dosage to stop them in my feet.  She increased my dosage of meds on Monday and I will try that for the week.  I had a foot cramp (not a full blown spasm) yesterday and this morning I woke up having a very hurty muscle spasm in my calf muscle.  I cannot say for sure that these were not caused by the stress of going to the doctor yesterday or not, so I will just document them and continue monitoring to see if the meds are working as they are supposed to. 

I have had a migraine for 11 or 12 days – two days in the past two weeks I got a reprieve, but it returned with a vengence thereafter.  A “turn off the lights and be quiet” migraine.  NOT easy to deal with when you have four children at home!  I can “feel” the migraine in the left hemisphere of my brain – my right side feels normal, but if I could just cut off the left hemisphere, I’d feel great!  🙂

Last night, the entire lower half of my face went numb and was tingly all over – feeling like your hand when it falls asleep and slowly wakes up.  The numbness on the right side of my face, after a stabbing migraine, was what sent me to the hospital in December 2010 and the MS was diagnosed, so I *know* that this is also MS related.

I am also back to running into things when I walk, unable to keep my balance or move through a space without bumping into things.  Again, this was a symptom I had before my initial diagnosis.  I am currently sporting a lovely baseball-sized bruise on one thigh because my husband had cleaned under our dining room table and did not put it back where exactly sat and I misjudged its placement one evening and plowed right into it.  OWWW.

This is the “face” of an MS relapse in my world.  These can be different for each MS patient, but the symptoms that are common are well-documented on various websites, so researching them after they start has been rather simple.  AND, with each new symptom, I call the PA and have received a call-back from her within an hour – so, you can bet we are DONE trying to get the neurologist’s nurse to help us.

My next step in this venture is to get a referral and make an appointment with another neurologist in the same office I already go to, as she specifically handles migraines.  We will see if perhaps she can help me with this head of mine!!!


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    Button Memory Keepsake

    While my daughter and I were cutting up the pajamas for my friend’s quilt, I had a “shazam” moment:  all of the garments had buttons on them, and I didn’t want them to go to waste.

    So, I had my daughter cut all of the buttons off of the jammies and we put them in a button holder I had been graciously given at the quilt retreat earlier this year:

    Before we put the buttons in, I added a note in the bottom of the little container:

    I thought this was a wonderful little keepsake for our friend, something to keep in a special place with all of the buttons from her dearly departed mom’s pajamas during her last years that she was alive.

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      Help Me Make This Quilt!

      A local friend (and newspaper columnist) lost her 91-year-old mother last year.  Her mom was a Veteran in her younger years and a very special lady.  Mikie (our friend) works with two of our children at the school’s garden.  She also occasionally employs our older girls to help her with spring and fall weeding at her house.  There was one time, recently, that I needed someone to keep our daughters because we had a funeral to go to – and Mikie graciously accepted.  She loves our kids, and that makes the friendship even nicer.

      Mikie called her mom DDM in her newspaper column, which stood for “Dearly Demented Mom”.  Her mother had dementia and although it was very hard on Mikie to see her mother’s mind failing – she did what any loving daughter would do and put her life on hold to care for her mom in her final years on this Earth.

      After her mother passed away, I told Mikie I would love to make her a memory quilt out of her mom’s clothing.  I did not realize the extent of my offer until I dipped into the box of clothes she sent this past weekend.

      She wants this piece to be the center of the quilt – it was a special table topper that a friend of DDM’s made for her in 1995:

      Then, most of the clothes she sent were her mother’s cotton knit pajamas, and they are all light pastels that have faded with a lot of washing:

      She also included three of her mother’s robes – one is terrycloth, one is velour and one is fleece:

      Finally, she sent along two dresses that her DDM made for her when she was little:

      Now, I have made a LOT of quilts over the years – but, I have never encountered a total quilt brain block such as I have with this quilt. 

      So, I ask of you – how would YOU put together a quilt with these fabrics???  HELP!

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        Our Crazy Lives

        Four kids is a lot.  I can assure you that many told us as we were propagating our family that we were nuts, we needed to learn what caused us to get into that situation in the first place and how much money it was going to take to raise our family. 

        The thing is, we believe in God.  We gave Him the reigns about how many children we would have.  The only thing I ever said about it was that my mother could not handle raising five children (literally abandoning us when our dad died) and therefore, four was my limit.  I think my husband would have been happy with a half-dozen or more kids – me, not so much.  But, regardless of how many children we had, God would provide.

        Christmas (about) 1975 – My parents and their five children – I’m the one front left (middle child)

        When the kids were young, we had a blast as a family.  We took them places, we enjoyed watching their little personalities unfold and we felt so very blessed to be the parents of such entertaining children.  That feeling has never left us – we continue to be blessed.

        BUT, three of the kids are teenagers and the youngest is a tweenager.  They are all about two years apart. 

        Our four children, three teens sitting, one tween standing.

        At this point, their lives revolve around school, their extracurricular activities and their friends.  Which means that is pretty much what our lives revolve around, too. 

        And we usually do okay until the dreaded month of May comes around. 

        Let the chaos of scheduling commence!

        The school has programs and award ceremonies, my Girl Scouts wrap up their year (I am the leader of one troop and our middle daughter belongs to another troop), the Boy Scouts (of which my son is one and my husband is their Scoutmaster) go on monthly weekend camping trips and other weekends of fundraising for summer camp, end-of-school parties and field trips are planned, our church youth (of which our two oldest daughters are involved) have weekend fundraising for their summer church mission trips, etc. etc.  Even if you only have one child in school, you know what I’m talking about!

        And wouldn’t you know it, a lot of these events fall at the same time or on the same darned nights!!!  ARGH 

        By the end of May when some parents dread their children being home for the summer, I can tell you that we are SO ready to stop running the kids from one end of the county to another that we are HAPPY for summer holiday!

        Forget the amount of work it takes to raise four children.  Forget the amount of money to feed them.  Give me a May that is as easily scheduled as the rest of the school year and I’ll take it with the quiet calm we prefer to live our daily lives.

        Let me just re-cap this past weekend.  Friday night we had a lovely and calming family time.  The kids watched a movie and said their prayers almost on time.  Our youngest was snotty and coughing and had caught a little cold.  She was more whiney than usual, but we’ve come to expect that from her.  She went to spend the night with her grandma after the movie because I needed to get our manly-men to town VERY early the next morning and I felt okay at leaving the two older girls to sleep but not the youngest as she sleeps very lightly and with that cold, I didn’t want to start the day with the whining and crying I knew would ensue.  She did not want to go, of course, knowing that the rest of her family was staying at home, but she finally relented with the promise of being able to watch television (we do not have television reception in our house) in bed.

        My husband woke me up at 5 o’clock a.m. the next morning, so I could have a little wake-up time before I had to drive them to town for their weekend Boy Scout campout.  I was on the road by 6:30 and back home by 7:15.  The big girls were still asleep, so I came to my office to continue my morning wake-up.  Around 8:30, I heard my MIL leave with our youngest to go to her church as they had plans to work on some projects for my daughter’s final section of her Girl Scout Journey book.  I think one of the older girls called me around 9 am, telling me she was up but not yet awake.  I went back home and began working on a quilting project and the girls finally came to life, one of them even helping me with my quilt.  But, it ended there – the girls started following me around and talking to me, and there was no way I could continue to be distracted with my project and talk at the same time.  So, I shut up my sewing room and just went and layed in the bed while we talked. 

        Once our youngest returned, our Saturday turned into a regular day, except I started getting raw sinuses and I knew that our youngest daughter had shared her germies with me and I was coming down with her cold, too.  (MS is an autoimmune disease, therefore, I am susceptible to more germies than ever).  The kids went to bed on time, I sat home and read until they were soundly asleep and then I locked up the house and came to my office for an hour of quiet “Tammy Time”.

        Sunday was going to be a challenge in logistics, for which we had already tried to plan accordingly.  Our oldest had to give a presentation in their Sunday school class (in a town 45 minutes away from home) and I had to get our weekly groceries while they were at Sunday school, I had to pick up my men when they returned from their camping trip (in a town 15 minutes from our home) around noon and then I had to get our middle daughter to her eighth grade promotion/graduation party (20 minutes from home) at 1 o’clock.

        I made it to church and the grocery store.  When I finished at the store, I got into the car to leave and a nice man knocked on my window to tell me I had a flat tire. 

        My world deflated as the tire had.

        I am already dripping with perspiration and my husband had just repaired that tire on Friday, but he also told me the contraption that holds the spare under our Suburban was not working – so, I knew I had no spare tire.  What to do???

        I quickly texted our oldest daughter and asked her if someone from church could come and help me. I called my husband and he told me to just go to church (where the AC would keep me from melting – heat and MS mix about as well as oil and water) and he would pick up his mom’s car from her while she was at church and come rescue us, bringing along a spare tire to fix my Suburban.  Thank God for the loving kindness of folks at church.  The youth council representative came and picked me up from the grocery store parking lot and took me to church.  Although it was unplanned due to scheduling, we attended church – I think God was telling us we should not play hooky just because of a little scheduling conflict!  My husband showed up about 10 minutes after the service and took us to the store to change the tire.  I had at least parked the car in a shady spot, so my husband was thankful for that!  Then, he took DD#2 to her party and went to pick up his mother from her church while I carried the other three kids home.  We put away the groceries, took care of the dogs and our stock (chickens and turkeys), made lunch and my husband showed up just as we were finishing our lunch. 

        Then, the angels looked upon us as my snotty self and our snotty youngest daughter layed down to take a much-needed NAP!

        When I woke up, my husband had gone to pick up DD#2 and our Sunday evening turned back into its normal, calm self – one daughter on the computer, one son watching a movie on the portable DVD player and the other two girls watching a movie on the television.  Prayer and bedtime were back on track and now we start another hectic week.

        Tuesday night is daughter #1’s awards ceremony, Thursday is complete and total chaos. 

        Oh well, having four kids is truly fun, exciting and worth whatever we put into each and every day.  We wouldn’t change a thing ….



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          Mystery Quilt Dash

          If you are not already or member or have not joined in my May Mystery Quilt Dash, I invite you to join us!  Membership is free and you not only get to see some great online quilt shops, you also earn a part of a quilt pattern with each shop you “find” the Mystery Quilt Dash image in!  On top of that, if you complete the Mystery Quilt Dash, you are in the running for winning a set of fat quarters given away at the end of each Mystery Quilt Dash game!

          Please join us!

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