Category Archives: Living with Multiple Sclerosis

We Interrupt This Quilt Blog for a More Personal Look at Multiple Sclerosis

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I try to keep this blog about quilting or my kids, but there are days (weeks?) when my multiple sclerosis (MS) issues need to be written down…for a reference for myself and as a legacy for my children.

Sometimes life just stinks and you have to make the best of it.

Two years ago, the neurologist I was referred to told me I was too old to be diagnosed with MS and she made me get another brain MRI before she believed it.  Once she saw that report, she not only could see the three lesions I already had but a fourth one was demyelinating, too.  At that point, she begrudgingly agreed that I had MS, though I did not have some of the common symptoms so she still wasn’t 100% satisfied.  And part of that, admittedly, was that there is a vascular disease on my paternal side of the family that causes brain and heart aneurysms – it has already killed my dad and my brother, so although she was agreeing with the MS diagnosis, she still kept me mostly in the dark about MS because of this genetic disease.

She had home health come out and give me a high dose of steroid infusions over a three-day course.  That helped the swelling in my brain enough that I wasn’t so off-balance and could talk better (where the third lesion was located was in the left area of my brain that controls everything on the right side) and could at least eat without choking.

And now we come to this year…the year that MS has reared its ugly head.  And if that neurologist didn’t think I had MS before, she definitely believes it now.  I have had horrid burning in the nerves in my legs and feet.  It feels like I’m walking on a bed of coals – except my foot is not hot, it’s the nerves inside that are burning up.  And the muscle spasms in my feet and legs are nearly constant.  They had slowed down for a while when I started the new injection medication, but they are back with full force now.  I obviously notice them happening more when I am on my feet a lot during the day.  And the dizziness I spoke of before is happening a number of times during the day.  I could just be laying in bed and the little roller coaster in my head starts up and all I can do is try to focus on something (like reading my Nook) and it will eventually go away.

But this past Monday was a day I never want to have again.  I never want my kids to see me like that again.  I never want my husband to have to care for me like that again.  Monday is gone, I pray I never have another Monday like that.  EVER.

I was fine in the morning on Monday, as fine as I usually am, with some hip pain.  I had an MRI appointment in San Antonio (80 miles one way) and my husband and I went to that and came home.  Hence, I was later that usual in taking my afternoon meds…but, that’s not been a problem in the past.  When I got up from nap is when the nightmare started.  I sat up and not only was the roller coaster in my head spinning, but the entire ROOM was spinning!  I went to the bathroom, thinking it was just a minor issue and that it would go away like the usual dizziness I live with.  I then went outside to visit with my foster mother.  When I got up to come back into the house, I realized I couldn’t walk – the spinning of the room was such that my brain was unable to tell my feet to move.  I saw our youngest daughter and asked her to help me across the room to our bedroom.  She did fine but once I got to the bedroom door, I was once again paralyzed and these darned feet wouldn’t go forward anymore.  My husband came and took over for our daughter and was able to keep me upright and aimed at the bed.  Unfortunately, that youngest daughter was not the best choice to help her mommy – she was terribly traumatized by the whole event and it took another hour before she quit crying and asking if I would be okay or if I was dieing.  <gulp>

I couldn’t open my eyes.  I couldn’t sit down because my hip hurt so bad.  My husband got me into a prone position and then went and talked to the kids about what they had just witnessed.

After the kids ate dinner, hubby came into our room and it was shot night so he got the shot ready and gave it to me, then brought me my nighttime medicine to take.  He then had to take my clothes off of me and put my pajamas on – that was how paralized I was from the MS.  He got me laying down and covered me up and I was done for the night.

Well, not quite done – I had to get up in the night to use the bathroom, but instead of taking the usual right turn after going past our bed, for some idiotic reason I turned left…and ran smack dab into the chair that we put between our bedroom and the living room so the dog won’t go into the living room and sleep on the sofa!  Once I hit that chair, I knew I was going down, I just didn’t know which part of me would hit first.  I guess my head was the best choice (I really had no choice because the room was still spinning) and I landed on my forehead.  Good thing as this head of mine is pretty hard and I didn’t even get a rug burn!  Once I righted the chair and woke my husband up with my gymnastics, I remembered the way to the bathroom and went there.  When I came out, hubby turned on his bedside lamp so I could see to get to my side of the bed.

When I woke up Tuesday morning, the world seemed right.  No lasting effects of the dizziness I had endured the day before, though now both of my hips hurt.  We think it’s because we need to get a couple more tubes for our soft-sided waterbed….accompanied by the fact that when I take my medication at night, I do not move from the position I lay down in.

That’s an awful day in MS-land.  We continue to pray for days that are way better than last Monday!

Schedules Schmedules

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We are having a whopping good time here – come and join us!  🙂  (NOT)

Next week is spring break for our kiddos.  You’d think that should be a week for a little rest and relaxation and spending time with the kids?  NOT gonna happen with four teenagers in the house!!!  One day, I have to go get an MRI.  Next day, DD#3 has to get a sports physical; that night, we’ll be celebrating her birthday along with my foster mother’s birthday.  Next day all four kids go to the dentist for check-ups.  Next day I have to take my foster mother to town for a chiropractic appointment.  Then, the kids and Grandma have ganged up on my husband to take them on a long weekend to the coast (thankfully, I’ll spend the time they’re gone taking care of the pets and fowl at home alone).  In between all of that, I need to make not one but three special birthday dinners (one on their actual birthdays and one for the day they’ve chosen to celebrate their birthdays), try to remain calm so I can function and still take time to enjoy the kids on their break.

We also have a special project that’s been started and hubster has to do the lion’s share of the work on getting that set up.  Unfortunately for him, he’s also our driver, so he has to do double time instead of me sharing the loads with him. 

And then comes scheduling for DD#1’s high school graduation, the award’s ceremonies she has to attend, the campus tours, the continuous scholarship forms and the never-ending out-of-pocket expenses necessary for her graduation.  Her graduation isn’t until May but it’s already been a LONG semester with something every week for us to deal with for her impending graduation – and her parents trying to keep her grounded enough to keep her grades up.

One-Act Play (OAP) is also taking up time for DD#1 and DD#2.  They have attended three festivals now and that’s the end of those, but competition is the third week of March (and they won’t have practices over spring break) so their director has added yet another evening to their normal practice schedule.  And DD#2 is in tennis, so she practices up to four nights a week and usually ends up staying at school for OAP practices, without a break in-between times.

And then summer schedules have been discussed for a couple of months.  Who wants to go to camp?  What camps do they want to go to?  Who is working this summer?  Who is volunteering this summer?  On and on and on.  I think the only thing that’s been “for sure” determined is Boy Scout summer camp for my husband and son.  Everything else is still being discussed, with dates penciled in on the calendar.

Our kids get as much of us as we can give them.  I would hope that most parents do the same for their kids, so you may already be in the same situation that we’re in.  Many mention the fact that once they leave home, we will miss all this fun.  At this point, that fun is no fun for my husband and I am unable to help much because of my MS. 

We take each day as it comes and keep adding or subtracting from our yearly calendar.  Is anyone else dealing with so many schedules, conflicts and time lost trying to schedule their days and weeks on the telephone?

Thanksgiving Quilted Heart

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This year, I watched many Facebook friends write a day’s worth of “thanks” leading up to the Thanksgiving holiday.  I daresay, I’m one of those who gives thanks daily – regardless of a looming holiday.  I have a prayer list – one side of the list is people who I need to pray for and the other is a list of thanks to praise Him for.   I always say that I have a quilted heart.  It has been ripped out, shredded, hurt over-and-over again – but, with love and forgiveness, it has been stitched back together.  Certain folks need to hear that I am very thankful they are in my life, and in the life of our family:

  • My Creator, my Living God, my Rock – God the Father.  All thanks are His!
  • My life-long partner, my love, my caregiver – my husband.
  • To our four children – I never thought I’d have kids, but it’s the best job in the world, to be a Mother!
  • To my brothers, sisters-in-law and their families – thank you for letting me be a part of a family.  You are loved.
  • To my other families who raised me – my aunt and uncle and my third foster parents, and their families.  You, too, are loved.
  • My MIL and her family – always surrounded by love.
  • My SIL and her family – you make my children’s lives so much more fun!
  • My MS friends, without you, I would surely be floating in a sea of never getting answers for some of the symptoms I endure.
  • My quilt friends – you feed me with your creativity, your exhuberance for life, your friendships and your giving hands.
  • My virtual friends, many of whom I’ve never met but who are still a large part of my online life.
  • Those special friends, the ones who send me gifts for myself or my children – out of the goodness of their hearts.  We work hard to pay it forward, though we rarely pay it forward the same amount as has been given to us.
  • Our church friends, those who pray for us, those who email me to check on me, those who care.
  • The doctors, nurses and other medical personnel who are striving to make those of us with MS suffer less and get better quicker. 
  • The teachers who teach my children – may they be blessed by others as our children have been blessed by their knowledge.

This is certainly not a full list, but it’s a good start.  I must say, I am thankful every single day that I can get out of bed and start my day.  Some days, MS rules my waking hours.  Some days, I am able to live a halfway ‘normal’ life.  Each day I get up is a gift from God, and I will sit on the side of the bed and thank Him for allowing me to have another day with my family and friends. 

To you, I extend a quilted heart Happy Thanksgiving!

Time for a Change

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I had an appointment with my MS neurologist last week.  She had not seen me since February.  I had other appointments with her but she pushed me off on her PA (physician’s assistant) each time….because my insurance is Medicaid and she doesn’t accept Medicaid.  In the past, her office instituted a policy whereas they found that a number of their patients were going without their medication in order to be able to pay her for her appointment expertise – so, she had a plan where those of us who were unable to pay or were on Medicaid were exempt from paying.  That lasted a year and then we were no longer worthy of her time and she stopped the program.  My frustration over this issue is beyond measure – we had a choice to find another neurologist or pay cash for our visit.  Thank God for my lovely church family, who started a fund for me back when I was first diagnosed.  We were able to get the church office to pay for the visit ahead of time.

Please don’t read into my frustration.  I have been on both sides of the issue – having worked for doctors through medical transcription and billing for a number of years.  I know they have a lot of overhead – leasing/owning a building, professional licensing, malpractice insurance, employees, etc. etc.  This neurologist own her building, she owns the MRI testing machine in her building, she gets awarded huge grants to run numerous drug studies for major manufacturers of MS medications and she gets paid by people with insurance or in cash.  My frustration over a $65 fee (Medicare rate) is because she has a whole lot of income, has had a PR team working hard to publicize that she is the best MS neurologist in the city….and yet, those of us who need her services but cannot afford them are left out in the hot Texas sun to bake.

Oh yeah, it’s my fault that my husband has been unemployed for seven years and I am unable to work anymore.

I also realize that a large number of people, including some in my extended family, think that because I’m on Medicaid, I have to take what I can get because I do not deserve more – I’m unworthy based on a lack of income.  I also know that I am considered the dregs and drain on society because of my lack of income – hence, they feel I should take what I can get and get over it.  Quality healthcare is for those who can afford it and they should be treated first.  Oh yes, I get that, too.  Unfortunately, my lack of income is directly related to my MS.  At this point, I am on Medicaid because of my disability status and I will be switched over to disability Medicare next year.  That will bring another host of problems as just as many doctors won’t accept Medicare that don’t accept Medicaid, but we will cross that bridge when we get to it.

Back to my appointment.

My neurologist talked about the symptoms I am experiencing, did a few strength tests on me and then looked at me and said, “Well Tammy, it seems you are worse now than when you were diagnosed nearly two years ago.  Perhaps the Copaxone* isn’t working for you.”

DUH

She would have known this if she’d ever read my chart after my numerous visits and telephone calls with her PA since February.  Obviously, I was again unworthy.  And, she was busy. 

She nearly tripled my muscle spasm medications that I take, she ordered a new MRI for my brain and she decided to put me on Betaseron* injections and to discontinue the Copaxone*.  Unfortunately, the muscle spasticity has not been medicated away – I still have them at all hours of the day and night though not as frequently as before I saw her, they still hurt and make it difficult to walk.  The migraines that we had been able to medicate away have come back, though I believe this to be a result of being off the Copaxone*.  And they aren’t the never-ending migraines that I had before – they may last for a few hours or a day but rarely do they come back the next day.

She also decided to have the lab in her office take six tubes of blood to run all sorts of tests on – the most important being a full autoimmune panel as she thinks we may be dealing with more than one autoimmune disease (rheumatoid arthritis, lupus, etc.).  We are still waiting on their office to send us the results of those labs – they are not in a hurry and we are at their mercy to await the results.

Yes, I am frustrated.  Yes, I do not feel good most of the time.  Yes, I want to get better to be the wife my husband deserves.  And the bottom line is that yes, I want to get better so at least I can be a mother my children deserve. 

I battle with myself over the hypocratic oath vs. the hypocritic treatment I am receiving.  I feel I should be worthy of the best treatments available and the best doctors available for this relentless disease – even if I have to pay cash for my care, I should have the CHOICE.  Multiple Sclerosis is not all that common when you look at the big picture of the number of people in the world vs. those with MS.  Perhaps once I get on Medicare I will not be treated quite so poorly by those experts who look down their nose at me now.  I do not know.  But, I certainly don’t feel like I should be left in a bed in the hallway until space becomes available in the janitor’s closet and ignored by everyone who passes me by.  And that’s truly what it feels like to be on Medicaid.  And to have a world-renowned physician who specializes in MS not realize for nearly a year that the injections I have been taking are not working and I am now worse than I was a year ago because she does not accept Medicaid, she is most certainly culpable and allowed this disease to get out of hand in a short time when it could have been prevented had she taken the time to see me or read my chart.

Not to mention the total lack of support from most of my extended family and some friends.  They don’t want to hear that you’re sick.  They don’t want to even whisper that you have a disease.  Very few of my extended family even talk to me anymore, once they found out about my MS diagnosis.  So now, I’m cut off from the love I once shared with many AND I’m cut off from quality healthcare. 

But I know, it’s my own fault.  I am a drain on people and the system.  I get it.  And when I get upset over all of it, my husband reminds me that it’s he and I against the world.  He will fight for me, he will take care of the things I can no longer take care of and he will work even harder to make sure our children are raised in the way we both agreed we wanted them raised like.  I just keep myself to these hills of Texas and enjoy what is right in front of me – because anything beyond these 20 acres brings me pain and brings our household suffering. 

And to those of you who don’t want to hear about it anymore – I get that, too.  Go ahead and live and love in your little worlds, I’ll be just fine.  I have lived most of my life feeling unworthy and will continue to do so. 

This is not a pity party – this is the reality of my life living with MS. 

 

*Copaxone and Betaseron are two injectible medications that are prescribed to help limit the instances of MS lesions in the brain and/or area where active demylination of the nerves is occurring.

 

 

The Black Spot

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Yesterday, our pastor did the children’s sermon based on the 20th chapter of the Book of John from the New Testament.  He drew a black circle on a white piece of paper.  He asked the kids what they saw, and all of them said they saw a black spot.  He asked them to look closer – what did they REALLY see?  They still answered the same, although this time, they looked closer and found that his black dot wasn’t drawn so perfect.

They missed the point.  But, he planned it that way.

He explained to them that sometimes we see only the black spot in life.  What else was there on that paper?  After a few very serious-looking faces studying the paper and some gentle prodding, they realized there was a whole lot of white space on that paper.  The black dot was only a small item compared to the white space.  He told them that life was like that sometimes – we look at and talk about the black spot in our lives, but forget about all the “good stuff” that makes up the white paper.

Even adults can learn from a children’s sermon. 

Even *I* can learn from a children’s sermon.

After that, I will admit to barely paying attention to the real sermon.  I was thinking about that black dot. 

(In case you are not familiar with John 20, it is about Jesus showing Himself after His resurrection to Simon Peter and telling him to cast his fishing net to the right side of the boat and not the left…to take a minute to try another approach and reap the benefits of a full net of fish.)

At this point in my life, my black dot looms large.  It nearly fills the white spot on a piece of my paper.  Some MS sufferers have something called muscle spasticity.  In me, the muscles in my feet and legs spasm and then contract – and it can take minutes or hours for the muscles to go back to how they should be.  Up until a couple of weeks ago, one medication has taken care of this problem.  When I started having breakthrough spasms, the neurologist’s office put me on another medication to take with the first one.  As with before, the added medication helped but within a few days, it no longer kept the spasms at bay.  Because I wake up in a new MS world everyday, I never know what to expect.  This past weekend, I started having bladder spasms, too.  On Sunday, I was able to make it through the grocery store but by the time I sat down to relax in the church pew, the spasms came at me with a vengence and by the time I got up to leave, I could barely walk.  It felt like I was walking on a bed of nails and rocks on the bottoms of my feet.  It hurts.  Bad.  On the pain scale, I’d give it a six to seven when the spasms are happening but closer to a nine when the spasms are at their worst.  That’s just my lower extremities.  My hands now fall asleep for no rhyme or reason.  The dizziness that originally sent me to the hospital in December 2010 continues, regardless of the medications I take to ward that off.   My fine motor skills in my hands are questionable – sometimes to the point that I cannot even hold a pen to sign my name to one of the kids’ school papers.  And every so often I’ll get muscle spasms in my arms, too.

My husband said something the other day to our primary care clinic’s nurse practitioner that I had never heard him say aloud.  He told her I had no quality of life with him or our children.  Those words, coming from the man I have loved and been married to for 20 years, hurt my heart.  Each day, I come to my office to spend a couple of hours waking up and checking on the day, then go home for lunch, my daily shot and medications.  From there, I head straight to the bed for my nap – which can last anywhere from two to five hours.  When I wake up, I go back and lay in the bed because frankly, I am no good to our family.  The kids come into our room, one at a time (so as not to make me dizzy) and tell me about their day, talk to me about their lives or just to say hello and how’re you doing.  Once the kids go to bed, if I feel like I can function without assistance, I come back to my office and do some work or just mess around for a little quiet time.  Perhaps it is more that I WANT to feel useful but the only way I can do that is to do it in the peace and quiet with my computer and without the noise and chaos of the kids.

After I got past the hurt about what he said, I realized he was correct.  I am not the mom who I used to be.  I am not the wife that I used to be.  I am not the woman that I used to be.  And this MS is taking way more of my life than I was led to believe it would and obviously, more than I want it to.

So, pastor hit my black spot pretty hard.  But, there are good things in life and I was bound and determined to try to figure out what those were.  That is what I was concentrating on while I was supposed to be listening to the main message:

  • I have complete and total faith in God the Father, who has been my lifeline throughout my life.
  • My husband is healthy and a Godsend to me and our children.
  • My kids are healthy.
  • My kids are doing well in school.
  • My mother-in-law is relatively healthy and the kids enjoy spending time with her.
  • My kids have a number of grandparents (relatives and not) who love them unconditionally.
  • I have a home and two automobiles that are paid for.
  • I have the tools needed to fulfill my quilting passion, when I am feeling well enough to do so.
  • I have friends who would help at the drop of a hat if we asked for it.
  • My kids know how to love and show it. 
  • I have understanding clients who are so very patient while I try to do their work.
  • I have business partners who are so very patient.
  • I have Nook books to read to help keep the dizziness down to a functionable level.
  • I have love – some near, some far – but, love nonetheless.

I am sure there is more to fill up the white space in my life – these are just the tip of the iceberg.  But, LOVE is the theme throughout.  Those who know and love me are the ones who lift me up on a daily basis.  They feed my soul.  They make the MS almost bearable. 

And I love them right back.