Tag Archives: MS

Roving lazy eye of Newt

Newt, Newt, Newt. Living in Charlotte, North Carolina on the border with the northern suburban areas of South Carolina, we were inundated with TV ads for the Republican primary last week. The whole ordeal was top of mind. It was unavoidable.

I will just say it. I do not like Newt Gingrich. I do not agree with the lion’s share of his political and philosophical stances. One would expect that. I am an unabashed liberal with some pragmatism sprinkled in here and there. My primary problem with Newt is that he is a narcissistic coward. He left not one but two marriages when the spouse got sick. If I had sons, this is the person I would point to for an example of how NOT to behave like a man.

He married Jackie, his high school geometry teacher, and left her during her cancer treatment. This divorce was to marry Marianne, a woman he with whom he was having an affair. He left his second wife Marianne not long after her diagnosis with multiple sclerosis to marry Callista, his staffer with whom he had been having a lengthy affair. I hope for Callista’s sake that she got her flu shot because Newt now has a whole national organization of eager campaign staffers from which to choose a new Mrs. Gingrich.

I understand that I am overly sensitive to the topic of a spouse leaving behind a spouse with MS because life with it is a hard row to hoe. I can honestly say that I understand how it could happen. Chronic disease and the havoc it can wreak on the intricacies of a marriage are not always apparent to outside observers. I am profoundly lucky, and every day I am grateful for the fact that my very exceptional husband did not bolt the afternoon we found out that I have MS. I am fortunate for every day since then. He has stayed. We have gotten through this together, not as a couple battling a horrid disease, but simply as a family living within the new normal that the universe has dealt us.

But, as Newt has demonstrated by speech and action, he is different. He cannot be content with the normal, especially if it involves hard work for the benefit of someone other than himself and work that is not part of making him look like the smartest guy in the room. A sick wife would flaw that perfect picture he seems to have in his head of his Destiny. He is not like the rest of us. He is above it all. The rules he tells us that the rest of us should follow pertaining to marriage, family, and fidelity do not apply to him.

All the while Newt presumes to pronounce to others that marriage is only for straight people because he knows all about the sanctity of the union. After all, he has done it over and over again, at least until things became inconvenient and it looked like marriage might involve some selfless work on his part.

I how know to do it, not

When my niece was a toddler, if an adult tried to assist her with a task she wanted to do on her own, she would hold up her hand as if to stop traffic and exclaim in an authoritative voice, “I how know to do it!” I seem to have become a toddler at the ripe age of 47.

Slowly, since my diagnosis with MS in 2005, I have had to come to terms with ways the disease limits my abilities, both physical and mental. I have adapted to the sometimes bone crushing fatigue. I endure pain, which is always there and sometimes extreme. I understand that I cannot hold up to large amounts of physical activity, instead learning to do exercise or other tasks in bite-sized increments. I have learned that heat can be crippling because it short circuits the electrical signals that travel over frayed nerves stripped of the myelin. I know that my brain does not work as quickly as it once did. I am a compulsively self-reliant person; however, I have learned to make adjustments. None of that means that I am happy with these limitations, but it is what it is.

Now, I have a new enemy of my physical independence: spondylolisthesis. A vertebra has slipped out of place in my spine, most probably the result of some unrealized injury in my childhood or teen years coming back to haunt me. An old stress fracture put the bone askew, and it finally became unstable. For a person who is resigned to physical limitations and the ongoing degeneration that can come with MS, I must admit that a slipped vertebra is kicking my ass.

I thought I had this disability thing down.  You know what I am talking about —  the whole  managing pain, exhaustion, embarrassment, and reliance on other people stuff. But now, I cannot walk across the house without agonizing episodes of pain shooting down my legs. I cannot bend over. I cannot lift anything. I am worn out from sleeplessness. I am foggy from drugs meant to alleviate the worst of the signals emanating from the nerve roots under pressure from the offending bone.  I am finding myself needing a helping hand from those caring family and friends around me. I admit it: I cannot do this on my own.

Life, as it is wont to do, is once again teaching me that I have lessons to learn. I only thought that I how know to do it.

It’s broke, so fix it!

My spine with L5-S1 spondylolisthesis

I suppose it is validation that I need to get my back fixed when the best thing to happen to me in a while is that I found out today that a good friend was able to talk to our mutual back neurosurgeon’s office and get me an appointment 2 weeks sooner than expected. When you look forward to a painful procedure, it gives some face validity to the seriousness of it that you are willing to go through pain to repair the damage. The conservative and intermediate treatments did not work. Time to go nuclear on the slipped vertebra in my spine! The errant bone is sitting on some nerve roots, and I cannot afford any more nerve damage than I already have.

In the meantime, I need to scramble to get my MS neurologist in touch with the spinal neurosurgeon to talk about my case. Then there is the litany of specialists — pulmonologist, allergist/immunologist, primary care doctor, etc. — to contact.  And, there are files and films to send a doctor for a second opinion. This should be a fun week of being on hold and waiting for call backs. All of this done while trying to work full time, being unable to sit comfortably for more than a few minutes at a time, and being unable to concentrate on much of anything because my back hurts.

With all of this, I am conscious of one overwhelming thought that should really not have to cross my mind in a civilized, industrial society:  thank goodness I have good health insurance to pay for all of this! I do not know how those not as fortunate as I in that respect get through much more serious things with the burden of insufficient or non-existent coverage in addition to the stresses of working through an illness.  I am not sure why our nation allows such a shameful situation to continue.

Mouse juicing

From 27 December 2011: Today is infusion day. Raining like hell outside, so the drive down to the infusion center should be an adventure. Once every four weeks, I spend an afternoon getting an IV full of mouse juice. I am treated for MS with Tysabri, a.k.a. Natalizumab, which is a monoclonal antibody agent that acts to inhibit immune cells’ ability to pass through the gut and blood-brain barrier. This keeps my own immune system from feasting on the myelin insulation sheath around my brain and spine.
Monoclonal antibodies are a class of biological agents administered to help the immune system do or not do specific business in the body. Some monoclonals kill cancer cells, some help minimize the rejection of transplanted organs, and some tamp down over-achieving immune systems that eat healthy parts of the body, like brains. Brains! Brains!

Mouse juice, you ask, with a tip of the head not unlike that of a quizzical golden retriever? Monoclonal antibodies are generated in several different ways. Tysabri is considered a “humanized” monoclonal. Protein sequences from non-human sources, such as a rats and mice, are combined with human protein sequences in a lab to make a humanized monoclonal antibody. The good folks that make Tysabri mix a bit of mouse with a bit of human, and voilà: a fine IV bag full of Chateau la Souricière! With that and a bit of luck, for 28 days my zombie immune system will not use my noggin as a chew toy.

Rick Santorum needs to get out my business and stop trying to kill me

Rick Santorum wants to kill or cripple me. Perhaps it is because I have gleefully riffed on the euphemism that Dan Savage invented for the word “Santorum.”  Perhaps he does not like me because am a godless, educated, East Coast woman who is unapologetic about being amoral. Perhaps he thinks me a wanton woman for my checkered romantic past before I married the love of my life eight years ago. However, the Republican Presidential candidate seems to be intent on doing physical harm to the likes of me.

Former Senator Santorum has stated that he wants to leave the legality of birth control to the states so that they may outlaw birth control.  I have an autoimmune disease that has a degenerative neurological course. I am not going to get better.  I am not going to heal up and regain lost motor control. I am on medications that would likely result in either spontaneous miscarriage, or worse, could potentially cause some awful effects on any child I might miraculously carry to term. Hence, without effective birth control, my body and emotional state would be subject to the serious damage a miscarriage would cause, or I would need to take care of a special needs child for whom I could only offer less than optimal care in both a physical and emotional sense because of my own disability. As an added bonus, pregnancy for a woman with MS is often followed by a relapse that can cause further disability! My health is precarious enough as it stands.

Let me state clearly:  I do not begrudge any person with a disease for their decisions about childbearing in their own situation.  I am simply talking about my own life and specific situation.  I am a 47 year old woman. I was diagnosed with MS at 40. My husband and I have made a very serious and considered decision not to reproduce. We had decided this before my diagnosis with MS. When we learned I had MS, we were so relieved that we had not decided to have a baby because it simply would not be a good idea in terms of my treatment, my health status, and our ability to nurture and support a child. This was the right decision for us.

The birth control issue is the tip of the iceberg on the things that the former Senator espouses with which I disagree.  Rick Santorum is driven by deep-seated religious convictions about birth control  that, if put into concrete policies, would hurt women and children by outlawing safe, effective, accessible birth control and family planning options. As a Republican in a party that supposedly stands for less government interference in the personal lives of individual citizens, I find it absolutely appalling for him to be getting up in my business when it comes to my family life. The beauty of being an American is choice. Mr. Santroum may not like my choices, but he does not get to have a say about my decisions in this any more than I have a say about his decisions about his health care and reproduction. He needs to keep First Thessalonians 4:10 in mind, where St. Paul encourages the early Christians in Thessaloniki, Greece “to aspire to live quietly, and to mind your own affairs”.

Allow me to explain

I will start with some background. I have holes in my brain in a literal sense. My immune system is snacking on my myelin. It makes my life a bit of an adventure. After the shock of a doctor calling and beginning the conversation by declaring, “Now, you don’t have cancer…”, well let’s just say that you know whatever comes out of her mouth next will not be good.

I have multiple sclerosis; hence, I will type of it often. I know more about it than a civilian should, but I am not and do not pretend to be a medical doctor. I have never played one on TV. To the best of my recollection, I have never stayed in a Holiday Inn Express. So, do not take my advice as gospel or actually medically sound. These are simply my observations from my own limited experience.