Category Archives: Living with Multiple Sclerosis

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 he said that 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 vengeance 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 is 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 will get muscle spasms in my arms, too.

My husband said something the other day to our primary care clinics’ 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!
  • Our kids are healthy!
  • Our kids are doing well in school!
  • My mother-in-law is relatively healthy and the kids enjoy spending time with her!
  • Our 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!

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!