Category Archives: Living with Multiple Sclerosis

Hematologist’s Rant

Quilt Therapy Posted on by

This has nothing to do with quilting, though I found it very profound and necessary to share.

I had to see a hematologist yesterday.  My white blood count has been higher than deemed appropriate, so my primary care physician referred me to a hematologist to see what they could see.  Hematologist said I was fine, if my number goes above 15 to come back and he’d worry.  Until then, get out of his office and have a nice day (totally nice man and funny, too).

But, he did ask about the Copaxone injections I take.  My husband explained the timeline of when I was diagnosed and when I started on them.  He asked questions such as why a three-month discrepancy, and hubster explained that we had to fill out the financial aid documents because there was no way we could afford $5000 per month of daily shots.   I added that the meds were developed and come from another country, and the doctor said it would be interesting to find out what that country charges for the meds if you lived there – he’d guess $250 a month instead of what they charge in the United States (and he was not U.S. born, so it had nothing to do with it being an issue over that type of thing).

NOT the right thing to say, as the hematologist quickly got excited and animated about his feelings on the subject.

His office is in a cancer center, because many cancer patients need blood work done before their treatments and some cancers involve the blood while all other treatments require watching blood levels.  So, his response was totally understandable, but I could have walked out of there and my husband and he would still be talking about the cost of medications and healthcare.  🙂

He explained that a certain cancer drug was developed to treat end-stage colon cancer.  When the drug was approved and came out to the mass market, its cost was $17,000 (cannot remember if that was per dose or per year, but it is high, no matter how you look at it).

After good results, doctors began trying the drug on people with other types of cancer, and found that it was effective for a number of cancers that were in their early stages; hence, it was used widely across the nation.

Did the price of the drug change?  NO.  Even though it was more widely used, even though the pharmaceutical company who did the research and development of it and then sold it had obviously already recouped their investment.  The cost remains the same.

It incensed the good doctor.  It made him SO mad that these drugs were not available to ALL people who needed them because some egghead put a price on them.  When asked by professionals why it cost so much for the patients, the drug company said:  “Because that is what the market will bear.”  That made him even more agitated.  It had NOTHING to do with R & D or manufacturing the meds or marketing them and everything to do with some random dollar amount they felt the market would bear.  And they have not changed their price because the market is still bearing it.  It is a much-needed form of chemotherapy for people who would die without it.

Where is the patient advocacy?  Where are the pharmaceutical companies in this supposed great health care package our government is trying to develop?

But, the bottom line to him was where are the people who could not afford the medicine?

All valid points.  All reasons why he accepts Medicaid insurance for those of us who do not have other forms of insurance.  And all reasons why individuals really need to be taking a good, hard look at what our future holds – because without the funds or insurance, you might as well buy your burial plot and begin planning your funeral now – because if you are ever stricken with a disease that has medicine that is not affordable to you, you can kiss the rest of your life goodbye.

 

 

One Year Anniversary of Living with Multiple Sclerosis

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One day, I can deal with life just fine.  The next day, the dizziness, nausea and unending brain fog leaves me preferring to be lying in bed, no noise or movement around me.

I was diagnosed with MS on 12/26/2010 after spending Christmas evening in the hospital and having a routine MRI the next morning.  Our world came crashing in on us and we knew our lives would never be the same.

After seeing a couple different neurologists and my general practitioner, the diagnosis never changed.  I have a classic case of MS, and as of February 2011, I have four lesions in my brain.  Four holes in my gray matter.  Four pieces of that affect my body in different ways.  Four life-altering white holes.   The abyss in my brain.

I did not really endure much medical treatment during the past year.  I had three days of IV steroid infusions in February, to help reduce the brain swelling around the active lesion that was affecting my speech and balance so much.  It helped a bit and I was able to recover some of my abilities, especially my ability to talk (and be understood) and to drive.  Then I began on once-a-day Copaxone injections.  It is supposed to be injected subcutaneously into your fat.  After much trial and error (and pain), we determined that I didn’t have enough fat on my arms, legs or hips to handle the injections without weeks of knots, burning sensation and pain….so, we decided to only inject the meds in my stomach.  It has worked out fine, with the few exceptions of symptoms that are normal – little rash, itching, swelling, redness, etc.  Much more tolerable.

I didn’t hear from my MS neurologist’s office the entire year.  My husband called them once for some heat-related edema I was dealing with and the nurse realized I hadn’t been seen for a six-month follow up so they set up an appointment.  We drove all the way to San Antonio, only to find out the doctor had an emergency and couldn’t see me.  My husband was not a happy man, and the only way for him to take out his frustrations was to decide that I needed a yearly MRI and see the MS neuro then, otherwise he couldn’t see any benefit in having her say the same things we’d already heard – nothing can be done, learn to live with it, etc.

I finally got to the point that my work took a nose-dive and our income followed.  Is hard to make my right hand type sometimes, since the most active lesion is in the left “coordination” center of my brain.  My memory is affected as well, so without copious notes, I forget what I am supposed to do.  I finally admitted to myself that with an unemployed husband and my income dropping by 75%, we needed help.  I signed up for public assistance as everyone around me warned me that it could take a year or more to get approved for disability and we needed help NOW.  Unfortunately, we didn’t qualify for financial help because I made $50 more than the state allows in a month.

Think about that for a minute.  The state allows one (doesn’t matter how many children you have) to make $250 to qualify for financial assistance.  I made $300.  In a month.  In my guesstimation, that would mean I would probably be better off NOT working because I could certainly bring in more on public assistance than if I worked.

That is not the path I chose, though.  The doctor had told me I needed to keep trying to do what I normally do to help the nerves in my brain circumvent the lesion, reconnecting the parts that were out of order.

We qualified for Medicaid and food stamps, which we gratefully use.  My children are fed and we have insurance to see to their medical, eye and dental needs.  It does not cover anything but medical for adults, but we will take what we can get and be grateful for it.

In December I also came to the revelation that I could not continue trying to make enough money to support our family and I formally filed for disability.  The paperwork is still being collected from my doctors, but the first gentleman who interviewed me over the telephone told me told me that MS was one of the few medical issues that is usually approved quickly – we are praying that is the case for me.

We had to sit our kids and my MIL down and explain the situation.  It’s SO very hard to tell your kids that you have something wrong with your brain, that you will never again be the Mommy (or DIL) that they have had their whole lives, but that most likely I will live a long life – the MS won’t kill me.  There were questions, which we answered as honestly as we could – but, we had to face the facts that we really didn’t know how or where the MS would affect me from here on out.  Now, after living with this disease in my brain, they are all finding out what my life is like and how it affects them – because in their world, that’s what is most important.  Some days, we can laugh and joke and have fun.  Other days, I just can’t handle the chaos that surrounds a house with four active children.  They get it, and have tried hard to adjust to my needs.  They are very loving and kind children, and I thank God daily that we worked so hard on compassion with them as they have been growing up.  They have learned to come into Mommy’s room and talk to her, one at a time, when I am in the bed and can’t seem to lift my head up without feeling like I’m on a roller coaster.  They always offer me an arm to help guide me along when we are walking in public somewhere.   They are a wonderful reason to keep hope alive even on my darkest days.

I went for a physical with a new clinic (that accepted our insurance) in November.  My labs were awful, prescriptions had to be given and follow up labs were scheduled.  All of the labs have responded to the meds except my white blood count.  It was high in December 2010 and was even higher in November 2011.  I had an appointment at the MS neuro’s office and they explained that it wasn’t the MS that was causing the high WBC, if anything, the Copaxone should be lowering it.  There was an infection somewhere – which led to more appointments with other doctors to try to get to the root of the matter.  I just had labs again last week and while everything else looked quite good, my WBC is still above the acceptable range, so now I go see a hematologist to find out if they can determine the infection.

The PA at the neuro’s office also said that I should not still be dizzy, perhaps there were other things going on.  We knew it wasn’t neuropathy in my eyes, as I’d already had them checked.  So, she suggested an ENT to see if my ears were the problem.  I already endured tests there without any conclusions, and will return to their office for more testing to see what we can see (or hear what we can hear).   She was very helpful in telling us things that needed to happen regularly, much better than the MS neuro had been.  She said I needed labs every three months, an MS neuro appointment every six months and an MRI every year unless I believed I was having a relapse or more lesions.  We can be very proactive with my course of treatment if we just knew what rules we have to live by!

I have my next MRI scheduled for next week, which is the test we have been waiting for – to see if the Copaxone is doing its job in keeping more lesions at bay and to see how big the current lesions ended up being.  We think this test will have much more bearing on my continued medical issues than anything.

On a more personal level, my emotions are all over the place.  I get up every morning and come to do my work.  I must do my work.  I must keep my fingers moving, even if I have to go back and re-type everything over and over again.  By noon, I’m about done and find myself heading home to have lunch and/or a nap.  I am sleeping more than ever but it doesn’t seem to cut down on the fatigue.  When I am stressed, the right side of my face goes numb and then the dizziness starts.  At least I have a little warning so I can stabilize myself (if possible) when the dizzies start.  The bottom of my feet are numb.  Occasionally, I have muscle and joint pain (right hip and hand), but it usually only lasts a few days and then goes away.  I am getting migraines much more often that can last anywhere from a day to a week.

Incidentally, SOME of my family cares about my well being, and a number of personal friends do, too.  They write me weekly, or me them, with health updates and words of caring and prayer.  There are a couple of people that I wish cared more than they do, but I understand their desire to just not think about whatever is wrong with me – out of sight, out of mind.  Selfishness shields them in their own little worlds.  It hurts my heart, but I have chosen to fill those spots with others who care.  My MIL has been extremely helpful in stepping up to the plate when she can.  Local friends have come to my rescue more times than I can count, driving the kids home and helping to accommodate me whenever I need it – and they are only a phone call away.  I also have made a virtual pal of a lady with MS who lives in Texas and who also worked as a social worker in a big hospital complex in one of our fair cities who has been living with MS for 10 years, and who helps me understand some of the issues associated with the disease.  Our church family has donated to a medical fund, to help me with medical expenses the insurance won’t cover.  There are blessings all around us, and we are ever so grateful knowing that.

It is true, our lives will never be the same.  But, perhaps, with continued commitment on our part, we can at least allow our children to find some semblance of order in lieu of the unknown future.   For me, that will be success.