Suck It Up Buttercup

There are responsibilities taken in life that you never expected or wanted. That is how the last 6 weeks have been. My grandmother had her knee replaced and that meant I had to step up and try to fill her duties while she was gone. No biggie? Wrong.

The matter of cooking and cleaning at her home was taken care of for the most part by my uncle. He made sure Papa was fed and the dishes/laundry was kept up. It was all of the other things that became my burden, I was happy to do it because  it is my family and I love them. When a bill came in I would get out Grandma’s check book and forge the checks to make sure the water and the ‘can’t live without’ cable was paid. I ran errands and picked up meds.

Every other day I would go out to the managed care rehabilitation place and visit Nana to see how she was doing and keep her abreast of what was going on at her home and mine. Often bringing at least one of my three kids along so they could regale her with their tales of summer exploits. After a half hour to an hour we would leave so she could rest, go to therapy, etc.

Her being in the care facility post surgery was a God-send. She could have all of her needs met at the moment she needed them. She didn’t need to be taken to appointments doctor or therapy. It was all right there for her which made it easier on everyone and took the worry and strain off of me. There was no way I could be taking care of her at her home and still be able to take care of my family at mine.

The hardest thing, the responsibility I did not want and somewhat begrudgingly to admit hated was the care of my mother. Do not get me wrong I love my mother and there is always my familial duty towards her.

The relationship I have with my mother is complicated. Complicated by our past as much as the present. I shall give a heavily abbreviated history to give a little insight.

My parents separated when I was three. My mother left Sheboygan Wisconsin with me and came home to Iowa to be by her parents. My father an engineer would visit Iowa one to two times a year my whole life. He would come home for my birthday and a holiday such as Christmas or Easter, bringing me gifts like a bike, barbie ferrari or a radio boombox. Those visits were hard on me and I would be weepy and moody for a week or so after he returned to Wisconsin, I didn’t realize at the time how much it hurt not having a father but that realization came years later.

I grew up living in low-income housing developments as my mother and I lived on child support payments of $330-something a month. Sometimes food was a bit lean but we never starved and my mother would not apply for any food assistance and the like. I never had the fashionable clothes or the latest (you name it). I had regular visits and stays at Nana and Papa’s which was like some glorious holiday. They had cable, a yard full of green grass and trees to climb, and she always cooked big delicious meals and deserts-she also expected you to take seconds!

It is funny that as a kid you do not fully comprehend when things are not quite like they should be. Once you get older and looking back you can see the wrong that was in front of you all along. My mother slept a lot, I mean a lot. The appartment was always blacked out from the sun with thick lined curtains. When she was awake she could be loving and quickly change to teary or very angry. I spent as much time as I could playing outside rather than being inside in the dark with her. She could be abusive but I did not realize that it was abuse at the time. I would be spanked, a few times with hangers, for the smallest of infractions. Compared to the marauding gangs of near delinquent unsupervised youth in the ‘project’ complex I was an angel.

She would let me get some new to me (often thrift store) clothes and I would feel so good until she would make on of her regular down putting comments leaving me feel like I was fat or unattractive. She tried to instill religion in me by the fire and brimstone method. So I feared any misstep under condemnation to burning in hell. I never did sleepovers with friends or get involved with any extracurricular school related activities. We didn’t have money to spend on those or a car to get me there. All this and more left me so socially inept that couldn’t even talk in front of class at school without tears forming in my eyes.

As I aged I saw the irregularities of my home life compared to my peers and I saw injustice that was put upon me. I grew quietly angry. Internally I would steam over the fact that she never did anything. She never tried to better our life, get a job or education. She seemed content to hide away from life and responsibility. As soon as I graduated high school I moved out, not even telling her ahead of time for fear she would try to stop me with anger or more than likely guilt.

You may wonder about my father through all those years and why I didn’t reach out to him. Well, he was mostly an acquaintance, granted one that I loved and craved affection from, but we didn’t know each other very well. When I was nearing my teens he had remarried to another woman and my relationship with her was more than a bit strained. She came with her own set of issues and I already had more than my fair share. At that point the few visits a year were enough of a strain.

Over the years my view of mother changed, not that the anger completely dissipated but it was largely replaced with pity. She had been suffering from undiagnosed depressive disorders for years. She never sought any help with them so I in part still held some contempt for her inactiveness in even caring for herself. Then some 11 years ago my mother suffered a stroke. At that point and still to this day she was living with her parents, again a way of dodging responsibility for herself. They found her on the floor of her roonmin a near vegetative state which would last for a long while.

I was at my in-laws house having a pleasant visit when an uncle called with the news. When I hung up the phone everyone around me was hugging on me and showing genuine concern. I feel guilty about it but I was angry. It was her own fault…sleeping away her life, never doing anything to get the blood pumping, sitting and eating, getting heavier and heavier…she did it to herself-right? We left the kids there and my husband drove me back to town. During the 45 minute drive to the hospital I was quiet, trying to convince myself that I should not be mad I should be worried, that’s what a good daughter would be.

Over the weeks and months she slowly came back-somewhat. She eventually regained her ability to talk, remembered my name and gain her movement to a certain extent. These days she can talk and walk but with some definite disability. She hit the jackpot of not having to be responsible. Monthly disability payments, her aged mother to care for things at home and people to chauffeur her where she needs or wants to go. It frustrates me but at least I didn’t have to be responsible for her or feel guilty, she had all of her ducks put in a row by somebody else.

That was until Nana had her knee surgery. All of the insurance stuff and changes to Medicaid that happened this year became my job to fix and figure out. The fact that she never filed for Medicare when she turned 65 has created such a complex mess I cannot tell you how many hours I’ve spent on the phone trying to get things sorted out. Then there are all of the errands to appointments, pick up prescriptions, or going to the store to spend her money. Granted I was usually the driver for her and Nana for these day trips. But now my health issues, the kids out of school for summer, Nana’s surgery and all the rest it was seriously becoming the straw that was threatening to break the camel’s back.

I fully believe as I write this that I just may be an awful person. I am tired and tired of feeling put upon. I have gotten to the point where I am letting responsibilities at home slide. When I do get to just sit I want to do nothing but lose myself in a book. Then the phone rings and I dread answering it because what in the world does the world want me to do now. I answer it of course and wait for the next piece of straw to be placed.

I am glad to be able to help my family and I love them. So even when I am worn out and resentful of the phone ringing I take a beep breath and tell myself (often out loud), “Suck it up buttercup and get to it.”






Nerves Misconducting

The saga of getting my prescription Multiple sclerosis medicine, as I shared in earlier posts, was finalized as of last Thursday. I was simply overjoyed when the UPS man came bounding up the porch steps with my package in hand. By that point my walking was terrible and many of my old symptoms come roaring back. Now I wish that I could report instantaneous relief and normalcy after taking the first pill but I cannot. After lots of rest and sheer dogged determination I am certainly getting around better but the other things are lingering.

It is amazing what you get used too. A person can deal with much and manage just fine. It is when one new thing is added or an old thing changes that creates the proverbial straw that broke the camel’s back.

I have had issues with paraesthesia, a kind of pins and needles, numbness, and maddening crawling sensations on my back for years. It will increase in intensity sometimes due to stress, weather changes, fatigue and Lord knows what else. As long as I take care not to absentmindedly claw my skin raw I can usually deal with it.

Then there is the MS Hug. It is definitely not a sweet as it’s name leads people to believe. Anyone who has experienced this can attest to that. For me it is as if a 800 lb gorilla is embracing me around my lower ribs & abdomen area. While the gorilla is not crushing me he is also not letting me take in decent sized breaths and thus I’d feel as though I could faint.

Numbness was one of my first symptoms of multiple sclerosis. All over my body are areas of varying degrees of numbness. I cannot feel anything in the majority of both of my feet, areas of the left side of my body and nearly all of my left hand and half of my right. I once absentmindedly moved a casserole dish without potholders, forgetting it had just recently come from a 400 degree oven. I didn’t feel the pain that I should have when I realized my mistake and suffered burns. Then there are the number of things I have dropped, crushed and broke(once a wine glass) in my hands. Greater caution and the number of burns, messes and lacerations over the years have been minimized.

Lhermitte’s Sign is a strange one. When I tip my head forward, chin towards chest a momentary electric shock sensation shoots down my back and to my finger tips. It doesn’t last long, simply a momentary zap.

The straw that’s trying to break the camel’s back…

The thing that I cannot completely deal with is an uptick in the level of spacticity and pain in my left thigh muscles. The pain as of late has been horrible, a stabbing burn deep into my quads. Bad enough it brings tears to my eyes when I allow myself moments of solitary weakness. I take a variety of things supposed to aid this but for some reason they are not doing their job as well.

The other thing is tonic spasms. Tonic spasms involve the extensor muscles (quadriceps-front of the upper leg & the adductors-inner thigh muscles) is an involuntary straightening of my leg. It is so bothersome and there is no way to keep it from kicking out. I try to mentally restrain it to no avail. The best way to describe it is like holding your breath too long, to the point your body is screaming for a breath until it suddenly gasps, only in this case it suddenly and painfully kicks straight. These spasms interfere with sleep, walking and climbing stairs.

I understood that I was going to have detrimental things happen during the 3+ weeks while I waited for the insurance company to do what they were supposed to do. I also know this is just the right now and may not be my forever. If it ends up being a ‘forever’ symptom I will just have to deal with it. I take solace in the fact that I have learned to adapt to so much already and my rate of success on that has been 100%.

Migraines & M.S.

The other day I was thinking back to when I was a kid living in an apartment complex full of single mothers. Not really sure what prompted it but I recalled who lived in which apartment and what kind of car they had. How we used play basketball and generally roam like wild marauders sometimes armed with squirt guns. Then I thought of Jeremy. One of the neighbor boys I played with frequently, Jeremy, often had to stay outside for quite a long time during the day. I recall how he told me it was okay and how he would rather be outside because his mother was ill with migraines. I didn’t completely understand.

He said the house had to be kept dark and quiet or it made her head hurt worse. At the age of 10 I thought that seemed silly, couldn’t she just take an aspirin like my mom. There would be long periods where we didn’t see his mother outside at all. Family and friends of theirs would stop by frequently during those times. She would have migraines sometimes for weeks and occasionally would end up being taken to the hospital. I must say in retrospect I feel very sorry for how much she must have suffered.

I have had migraines off and on for years. There have been some stretches where I had more days with a migraine than without. It was at those times where I have been at my least productive, if not my least human. When the pounding in one’s head is coupled with the severe stabbing pain, light and sound sensitivity, malaise, aura, dizziness and nausea you become a useless quivering mass of misery.

It was after my Multiple Sclerosis diagnosis that the Headache from Hell became more frequent. Granted by then I was more acutely aware of every little variance in my body day to day and hour to hour. I looked into this some years ago-do I have more migraines because of my MS, or is it just coincidence that I migraines & MS? There has been correlation between multiple sclerosis and migraine with many studies to find out if migraine is a precursor of MS or a result of the disease. There are around 321 million Americans and 420,000 Americans with MS, so what can be interpreted by that?

Headaches according to the National MS Society

Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

One report noted that migraine headaches were more than twice as common in a group of MS patients than in a matched group of people without MS. Other investigators found a prior diagnosis of migraine in one-third of the MS group being studied. A third study found that 20 percent of a sample group of people with MS had a family history of migraine, compared to 10 percent of controls, suggesting that there may be a common predisposing factor to both MS and migraine. Vascular or migraine type headaches have even been reported as the first symptom of MS.


Then Daniel Kantor, MD says in his paper 2013 MS and Migraine: More than Meets the Eye

For most people who have MS and migraines, the migraines came first and are not caused by the MS itself. Some people, however, had no history of migraines prior to their first MS symptoms. In fact, in some cases, a bad headache led to a first brain MRI (magnetic resonance image) which eventually led to a MS diagnosis. Sometimes, however, migraine may be a symptom of MS or even a sign of a MS relapse.

Basically as with everything else about MS nothing is black & white or for certain.

I’ve done as much as I could think of to mitigate the migraine triggers in my life. I tried altering my diet, meditation, always staying well hydrated, exercise and rest to no avail. My neurologist has tried her best to find the right cocktail of prescriptions to keep my migraines under control. Over the years I have been on many things to try and keep the pain under control. It got to the point where I felt like the proverbial wall and they were throwing things at me just to see what would stick. Now I take muscle relaxers, blood pressure pills (I have naturally low blood pressure so this is a small dose), and two antidepressants just to keep the roaring migraines down to minor growls.

The latest thing spreading around the internet is Daith piercing. daith-piercingA Daith piercing is a piercing in the innermost cartilage fold of the ear. Some say it works in the same way as acupuncture, targeting pressure points on the body to alleviate pain.

I thought this sounded wonderfully easy, just go down to the tattoo/piercing parlor get some metal shoved in my ear and leave never to have headaches again. Just like so much else in this world it is not as simple or assured as that. In the last two weeks I did some considerable investigating into this. Even picking out what I would have for jewelry.

There is no proof this works. Some people have found this to be a wonderful way to reduce or nearly eliminate their migraines. Others have had this done and found that it was not the miracle cure they hoped for.

So I have decided to relax, sit back, drink coffee, take my pills, and wait for a day where the powers that be find a grand solution to migraines.



Rx, Insurance & the M.S. Struggle

When a person has a preexisting condition the battle for insurance coverage and then the ensuing insurance cooperation is often nothing short of an endeavor. Over the years my experience has been a trial of patience and expression of ire. Multiple sclerosis ranks right up there with cancer in the eyes of the insurance industry. It is seen as a exorbitant never ending cost to their bottom line. Now I am only talking about health coverage because luckily I can get that through my husbands employer, but as for life insurance that I cannot attain. Too big and obvious risk for those companies.

Here is the fact- M.S. has no cure. M.S. has a variety of drugs now available to try to speed the recovery of attacks and to slow down the progression of the disease. These disease modifying drugs are far from cheap. The drug that I am currently on is Gilenya, it is a once daily pill. For a one month supply it costs $5,500.00. That is right people, $183.00 per pill.

The drug manufacturers do have programs to help fray the cost to the patients. That is determined by insurance coverage, income requirements, etc. This all works out wonderfully when properly set up but it can be a horrible stress trying to get it to that point, especially when your health insurance provider is changed as ours did this year.

I am on this particular drug because of problems taking many of the others available for treating this disease. Prior to finding a usable treatment I was having regular attacks, so regular that every six months my MRI’s showed more and more damage to my brain and spinal cord. I was using my wheelchair and walker predominantly and was having a shadow of the life I wanted with my husband and then 2 small children. I was put on Gilenya two years ago and it has done very well in keeping my illness in a kind of homeostasis. Rarely now do I need to use my cane, a night and day difference.

This medicine is essential for me. So when our insurance provider changed I contacted my neurologist and the new insurance company to make sure that getting my meds would be a non issue. HA! This drug must come from a specialty pharmacy through the insurance companies due to the expense and nature of it. One specialty pharmacy from one insurance company is, I have found, unwilling to work with the other. Over the last two weeks I have logged over 6 hours on the phone trying to get my medicine.

I am not saying that I have not had any help, in fact I had a wonderful woman from the current insurance company spend nearly the entire day on trying to get this figured out. Unfortunately she is an anomaly. She played go between for the two companies and the neurologist’s office and after hours managed to get the prescription to the current insurance company’s specialty pharmacy. She even managed to get it classified as a urgent order.

The specialty pharmacy said they would call the next day to arrange delivery. The next day comes and no call. The saga continued but from that point I no longer had that wonderful woman from before as my advocate and go between.

I truly miss her.

I called to see how things were progressing with my prescription order. Every day I have had a different person on the phone, each time I’d have to recall what I was calling about and what had already happened. Each time the person on the phone would read through all of the noted made on my account and then put me on hold. Then they would take me off of hold to ask if they could put me on hold so they could transfer me to another department. Finally after a number of holds and transfers I would end up at what should have been the last link in the chain, the area that should have my medicine and should be able to say ‘yes we have it and its on its way’.


The procession would lead nearly to the end of the chain with an individual who was more or less apathetic to the fact that my health is deteriorating without this med. These end of the chain individuals would merely inform me that they have it, it is in cue, and it is in the verifying script process. Basically I have spent an excessive amount of time wondering and waiting on whether or not i will get my very much needed meds.

As I write this today I am more or less confined to my bed. It has been two weeks without this rx and my multiple sclerosis is reliving it hay-day in much of it’s horrible glory. My legs have become heavy blocks of icy stone, I am weak and fatigued, and I have all the balance of a drunken three legged cow on a unicycle. My husband and boys have to aid me about the house to keep me from falling. All of this indignity because of a medicine and a company desperately trying to avoid it’s own responsibilities.

I would never wish this or any disease on anyone. But I am getting to the point where I wish the heads of the insurance industries could spend one day in the body of those who are infirmed by something more uncomfortable than a sore bottom from sitting on fat wallets. Perhaps then the care for individuals, no matter the infliction, would not be so easily disreguarded.

M.S. Diagnosis

It was on the morning of February 20th 2004 when I woke up with some numbness in my left arm and leg.  I decided to write it off as I slept wrong or maybe had a pinched nerve. I got myself, my toddler and the baby ready for the day.  My husband Tony had already gone to work a couple of hours earlier and the boys needed to be taken to Nana’s so I could get to class at the community college I was attending.  After dropping them off, while I was driving to school the numbness was worsening and my left side started feeling heavy.  I figured there was no harm in calling the local hospital’s ‘Ask-a-Nurse’.

I spoke to a wonderful lady at the hospital, telling her all of my symptoms.  It wasn’t long into the conversation that her tone changed a bit and I became a bit more concerned.  I parked the car and continued the conversation which ended with her advising me to get to the ER.  The nurse believed my symptoms sounded like I was having a stroke, possibly in part due to my birth control.

So turned around and headed to the hospital, calling Tony on the way.  He immediately went looking for his boss in the factory to let them know he needed to leave.  Upon arriving at the hospital I told them all that was happening and they rushed me back and hooked me up to an EKG.  My heart was fine.  By then Tony was there and the hospital staff was sending me for a CT scan.  That came back fine as well.  Next they had me do an MRI.  While sitting in the impossibly cold room waiting to hear about this final test I prayed…

“GOD please have them find whatever this is, I know this is not all in my head, give us answers and we will deal with them as we need to”.

You see for years, even as far back as high school, I have had these odd things come and go.  Pains, numbness, severe fatigue, and a whole myriad of other little things.  Physicians had on more than one occasion said ‘yes you have these things but we see no underlying cause’ alluding to it may be all mental.  Sitting there I was terrified that I was going to be told it was all in my head again.

When the doctor returned his face was concerned looking and he sat down on a stool and slowly began to tell us their findings from the MRI.  The physician said it looked like I had M.S. (multiple sclerosis) and that he wanted to send me to a neurologist as soon as possible.  I looked at my husband he looked like he just saw a terrible injustice; he looked at me with strong devotion and sympathy.  I wasn’t sad, scared, or even upset.  The sick thing is I was relieved.  It was ‘real’ and it had a name.  Granted I didn’t know anything about this disease at the time and I am sure I was exhausted from the hours of tests, but at that moment I was numb mentally as well as physically.

When we were finally allowed to leave the hospital we were both spent. Tony assisted me to car because by then I could not walk without aid. I didn’t want to tell anyone until I understood more but as it was we had to get our kids from Nana’s.  So there was no choice in telling them or not.  It was strange seeing the faces of my grandparents as Tony explained for me what all had happened.

Papa sat very still and listened but the old man’s brow was furrowed as if he was working on some sort of difficult task. Then there sat Nana in her chair, she looked helpless.  This woman is a rock, never did she put up with anyone’s guff, and she could do anything she wanted to put her mind to.  I didn’t comprehend this until years later when she told me what was going through her mind.

“I felt like the universe betrayed me, you are my first grand-baby and you were never have anything bad happen to you.  I was always going to make sure of that.”

There was certainly some humor that night though.  My mother has always been ‘special’ in her comprehension and certainty in her knowledge.  She began to tear up and pace about the room while Tony was explaining all of the events and results of the hospital trip.  I don’t know why but the whole scene for me was like I was outside of it all.  Watching the people in that comfortable, if not overly furnished room, as though it could have been on the television. Granted I was right there in the middle of it sitting in the chair by the fireplace holding a wiggly toddler on my lap.

That is about when my mother said,
“I am so, so sorry. You must have caught it from me and your father.  Something in our genes must be faulty.  It’s just not fair that my only child is one of Jerry’s kids!”

That’s when I snapped back into reality.  One of Jerry’s kids?  This struck me oddly funny seeing as I used to watch the MD Telethons and I knew at least this much, Multiple Sclerosis is definitely not Muscular Dystrophy.  So tired as I was and mildly irritated for reasons I’m still not sure I responded with a bit of biting yet giddy tone,

“MS not MD! GOD bless them but I’m not a telethon kid! “

The rest of the evening must have been unremarkable, seeing as I recall little about it. Tony got me home and put me to bed.  It would be one more long and uncertain day before I would see the neurologist.  The next day I saw my new neurologist, a Dr. Bekavac.  I had to have more MRIs done, with and without an injection of contrast to show active lesions.  I learned lesions are scars where the immune system is attacking the protective covers on your nerves.  Fun, huh?  That was followed by a spinal tap, not enjoyable but if you have ever had an epidural it is a similar process.  Instead of putting stuff in they are taking fluid out- gives you a wicked headache afterwards.  The diagnosis was a definitive MS.  The doctor wanted me to get on a disease modifying drug to treat my newly discovered disease.

The next morning Tony again stayed home to care for me and the boys, he also made phone calls to his mom in Manchester IA and my dad in West Bend WI.  The news was met with mixed feelings of denial and disbelief.  It was a lot to take in for everyone. Between the things the doctor said and all of the informational booklets about this disease I started to feel overwhelmed…and scared.

The drug treatments turned into a couple of month ordeal.  A nurse practitioner would come to the house and teach me and my husband on how to do the injections.  She was a wonderful woman who took her time and did her best to make us feel comfortable with the process.  On the third day of the drug Rebif the nurse noticed I was developing a reaction, a bad reaction, my tongue started to swell. She shot me with and EpiPen and called my doctor to let them know I could no longer be on that drug.  So a week later they switch my treatment drug to Copaxone.  I broke out in blistery hives. Same as last time I got shot with and EpiPen to stop the allergic reaction.  It was a few weeks after that that they had me try Betaseron.  Also a no go.

My symptoms progressed during that time. On top of the left arm and leg issues my right leg was starting to go numb from the knee down and the fatigue was unbearable. My neurologist started me on a run of IV steroids followed up with oral ones.  It would be years and a few trips to Mayo Clinic before I would be able to level out. During that time I went from using walkers, wheel chairs and canes interchangeably with periodic bouts of near normalcy with a smattering of steroids in the mix.

Through the days, months and years I ran a gambit of feelings-anger, fear, mourning, depression, detachment and finally acceptance.  Every day is it’s own day.  One day I may be absolutely fine and the next day find my limbs unresponsive.  But I did learn one thing and it is so desperately important…

….you can get through more than you ever thought you could and still see there is beauty and joy even in the little things all around you.