Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are truly just not right for my body.

With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!

There are some known serious side effects of Gilenya and probably some yet to be discovered. Nothing is yet known about the effect of Gilenya use during pregnancy. We do know that the following side effects are possible :

• slowed heartrate for up to 1 month after beginning treatment
• decreased lymphocytes (white blood cells) leading to an increase in the risk of infections
• macular edema (swelling on or under the retina) – this primarily leads to blurry vision and blind spots (risk begins at 3 months)
• shortness of breath
• liver problems (or potential failure)
• high blood pressure

If you have read my other posts about MS, you have probably learned that Rebif affected my liver. After approximately 2.5 years of use, I ceased Rebif on the day my doctor let me see test results that showed liver enzymes in my blood were approximately 7x the acceptable limit for normal people. My neurologist considers this to be about 3x the acceptable limit for his patients with MS. This was the first time I was allowed to see test results and along with some other events this has convinced me I should always get copies of my test results to personally review. More on that in future posts.

Reviewing the list above, one would definitely have concerns. During the first few weeks, I could tell that my heart rate was slower, but it did normalize in about one month. So far, I’ve certainly noticed a slight change in my breath, but the change is very mild. Blood pressure is always high for me due to constant pain and muscle spasms – it has been controlled for the last 2 years and has not changed with this new medication. My optometrist has cleared me, for the moment, of any signs of macular edema. And finally, last week I had the necessary blood tests done to check my liver enzymes, my lymphocyte count, and various other stats that seem irrelevant to me. I will learn the results in 2 about 2 weeks.

Having recently joined Facebook, I am part of the Gilenya (Fingolimod) Users Support Group. I heartily recommend this to new and potential users. The discussion is largely about side effects, tips, etc. Learning that I am not alone in a few changes I experienced after starting usage, I want to add a couple of unofficial side effects to the list above based on my experience with Gilenya.

• Insomnia – For the first couple of months after beginning Gilenya, I only slept for about 3 to 4 hours per night, even with the futile use of Ambien. I can say with certainty now that I have not had insomnia for weeks, and my sleep has never been better. Before my diagnosis I seemed to always have insomnia. On interferon my sleep was often interrupted by the flu-like symptoms that tend to occur for most of us for several hours following a dose.  On Gilenya, having survived the initial insomnia, I usually sleep like a baby. This seems very common among other users – many of which began taking Gilenya in the morning rather than at night and used Sleepytime Tea by Celestial Seasonings to lull them into unconsciousness.
• Changes To The Skin – My skin has been brutally dry since the first week of treatment. Many others seem to experience this, but others have developed acne instead. Personally I may buy stock in the wonderful and expensive moisturizer I’ve started using to combat my issue. Regarding those who have acne instead – I wish you luck. I never figured that out in my teens and I doubt I could now.
• Increased Muscle And Nerve Pain – My spasticity and flexibility have noticeably  worsened, and it seems that others have also noticed this. Generally speaking, I am in more pain on a daily basis. Some patients take the drug at night to attempt to sleep through this.

Combined with work stress, this issue with spasticity and flexibility has kickstarted a yoga habit for my husband and myself. We aspire to work up to a daily routine (we use DVDs at home – we will never have time to fit classes into our irregular schedules). Doing yoga more frequently opened our eyes to the fact that our yoga equipment sucked. Having paper-thin mats on hardwood floors meant painful ankles and backs and an inability to complete all the poses. Poor straps and blocks meant we really weren’t using them. So we have officially overhauled our yoga gear and are loving the new stuff. This is now our current setup :

• Aurorae Northern Lights Yoga Mats
• GOGO Yoga Mat Harness
• Hugger Mugger Bamboo Yoga Block
• Yoga Strap With End Loops

This is certainly not the best gear for everyone, but it’s the best we’ve found for us. While I may not bend quite like the folks on the TV screen, I can now dwell on this in contorted positions while being in less pain than before. And that is fantastic.

For my readers who are contemplating what treatment to begin or who are not interested in Gilenya, I have discovered a valuable resource. The MSAA (The Multiple Sclerosis Association Of America) has developed a program to assist with choosing the best treatment for you from all available options. This program is called S.E.A.R.C.H. – http://www.msassociation.org/programs/search/ This looks like a great service for someone making a change in treatment and for those who are newly diagnosed. Considering the wealth of new drugs and their varied risks working their way through the FDA pipeline, I believe this will soon be even more useful than it is now.

In two weeks, if my test results prevent my continued use of Gilenya I may even need it for my next step forward. For now – I’m just hopeful.

Grey's Diagram Of The Body's Intercostal Muscles.

Lately my absence has been due to serious trouble with something frequently called the MS Hug or sometimes Girdle Pain or sometimes Girdle Band Sensation. There are a couple of theories  on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (although not always). The more popular theory is that the spasms are caused  by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor here. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work at a telecommunications company and have no medical background.

My first experiences with this were extremely painful, but slowly I determined that caffeine, stress, and heat were triggers for all of my muscle spasms, especially the ms hug. I cut out caffeine altogether, tried to use yoga and perspective to control my stress, and I try very hard to stay out of the heat. It can hurt for a few seconds to weeks. It can hurt a little or can be so painful that I end up in the ER because valium to the vein is my only hope. Sometimes, even that doesn’t help. The pain can be unreal. It can be unbearable. It can be so bad that you do not wish to live through it. My recent episode was the worst it has ever been and drove my blood pressure to incredible heights.

This particular episode lately was triggered immediately by the stress of Novartis telling me that my insurance company (and I work my ass off to make sure I stay in a job that keeps me in insurance) had refused to cover any multiple sclerosis medication due to cost. Just to be clear, we pay for the highest level of insurance just to make sure we have the maximum amount of coverage.

There are different types of pain. When I talk to Will, I refer to them as “flavors” of pain. But technically speaking, neurologists will usually call this a “parasthesia” which means that it’s an abnormal sensation caused by neuropathic pain. To me, this makes no sense. When I randomly feel like a grease fire is on my hand that is an abnormal sensation caused by my brain. The MS Hug, or perhaps let’s call it the “MS Grip Of F*cking Death” clearly involves pain that is caused by muscles gone nuts, even if they have gone nuts because there are wonky ass nerves between your brain and muscles.

My daily treatment, per doctor’s orders this round went something like 10 10mg of Valium per day, spread out over 5 doses of 2 pills each. Up to 6 7.5mg Loritab per day, sometimes 10mg Cyclobenzabrine, sometimes 0.125mg Hyoscyamine, sometimes 2mg Hydromorphone.  Between 2 ER visits I was given mostly Valium, Solumedrol, and Morphine. After finally believing I had beaten this episode of the hug, the pain would return and I would have to take pills again. When I finally really beat the hug, I went off the pills altogether. Normally, I can feel the hug coming on, take a couple Valium and it will go away. At worst, it comes on full force, I take some Loritab as well, or maybe Ambien and I’m better in the morning. Or perhaps I may be on a couple Valium a day for a few days in a row.

I was not prepared for the fact that I would have to go through opiate withdrawal from this episode. It has been extremely difficult, to say the least. It brings back the darkest parts of my life in full color or just leaves me with the blackest possible mood for no reason. Every stupid thing I have done, everything I have done to ever feel guilty about haunts me – from fights with my family to being hurtful to former boyfriends. Every instance where I’ve let a friend take advantage of me or abuse me replays over and over. After a few weeks, I think I’m finally past it and hope to never, ever have to go through either the hug or the withdrawal again. Let me reiterate – the withdrawal has been TERRIBLE.

So, what is this MS Hug thing? A lot of what follows is probably ripped off the internet because I was an English major who dropped out of college to pay rent rather than going to med school.

The MS Hug involves some or all of the intercostal muscles going into spasm – these muscles hold your ribs together and make your torso flexible. The image at the top of the blog post shows these muscles – the most important thing to remember is that they are located around the abdomen and are largely in between the ribs. Maybe this is different for everyone, but for me it typically starts on one side and at worst ends up wrapping completely around me from just underneath my breasts to the top of my hips. My muscles often feel like river pebbles to the touch. Clothes get tight because the muscles push out, but the muscles also push in, so vomiting ensues and I can barely breathe more than small gasps of air. You may ask if this is a stabbing, throbbing, etc etc pain. It’s all of the above. The most common description is that you’re being squeezed or crushed to death.

The intercostal muscles fill up the spaces between the adjacent ribs. They are arranged in three sets, external, internal and innermost internal, eleven pairs of each.

There are three principal layers;

1. External intercostal muscles, which aid in quiet and forced inhalation. They originate on ribs 1-11 and have their insertion on ribs 2-12. The external intercostals are responsible for the elevation of the ribs, and expanding the transverse dimensions of the thoracic cavity.
2. Internal intercostal muscles, which aid in forced expiration (quiet expiration is a passive process). They originate on ribs 2-12 and have their insertions on ribs 1-11. The internal intercostals are responsible for the depression of the ribs decreasing the transverse dimensions of the thoracic cavity.
3. Innermost intercostal muscle, the deep layers of the internal intercostal muscles which are separated from them by the neurovascular bundle.

Both the external and internal muscles are innervated by the intercostal nerves and are provided by the intercostal arteries and intercostal veins. Their fibres run in opposite directions

All muscles are in a constant state of readiness (tonus). Although muscles work in pairs and groups to create movement a muscle can only contract (pull) while the opposing muscle relaxes. However, tension is always maintained in both muscle pairs (tonus) to maintain stability.  Tension maintained in the relaxing muscle prevents the contracting muscle from overreacting. When the nerve impulse to the muscle, or muscle group are interrupted the relaxing muscle or muscle group receiving the nerve impulse to maintain its opposing tension will no longer work to maintain the equalizing balance and its opposite partner will then over-react causing the symptoms known as MS Hug.

Here are some ideas for alternative therapies to end the pain from an active hug (and my take on them) from what I personally believe to probably be most effective to least :

• Loosen Your Clothing (Hell yeah. Or just lose it altogether. Seriously. With over 75% of MSers being women, I’m just gonna say take off your bra, hands-down. Men reading this will probably agree, but not necessarily for the same reason)
• Warmth (A heating pad helps, except when the cats demand it back and I wake up with cat scratches all over my stomach. A hot bath helps sometimes, and sometimes not.)
• Fluids (Maybe – I’ll just throw it right back up. Better than dry heaves? Although if the pain is not too bad, it’s sweet when Will makes hot chocolate for me – it’s like a heating pad on the inside)
• Pressure Or Massage To  The Affected Areas (I can usually only tolerate this on my back – the pain is too great anywhere else.)
• Ibuprofen (HAHAHAHA – no. This started for me when I was already on 80 mg of Baclofen per day for spasticity, so that never helped me. Valium (Diazapam), sometimes mixed with Loritab (Hydrocodone) is my only solution. Unless you’re very much not like me at all. I have Lyrica, but I haven’t had a chance to try it yet. I have also heard of Lorazepam, Xanaflex, and Neurontin. Botox is a newly approved treatment. Anecdotal evidence suggests that marijuana helps with all muscle pain, other pain, and lots of other MS problems. I’m researching this now and I will try to make this my next post.)
• Analgesic Creams: (This sounds like a joke, but who knows.)
• Deep Breaths Through The Nose, Exhaled Through The Mouth (Who can breathe deeply when you can’t breathe deeply?)
• Creative Visualizations: Pretend It’s Not Happening Or Is Being Relieved However You Wish (OK – whatever – I started going into shock last time and only stopped shaking for about 20 minutes while the morphine worked – feel free to give it a try though!)

Here’s hoping that if you experience this, that this post will help you understand it better. Or if a loved one is experiencing this, you will understand better what they are going through. The pain can be unbearable, and the treatment can be dangerous.

If your treatment involves narcotics, perhaps your experience will be different than mine. Be cautious. Ask questions. Almost all of the drugs that I was on for this episode noticeably affected my ability to breathe even when I was unaffected by the hug.

Be careful.

Good luck to all.

UPDATE

I had meant to write this initially, but I have heard that Oprah had Dr. Oz and Montel Williams on a show at some point and spoke about the MS Hug.  On the show (which I did not watch) allegedly Dr. Oz said that the leading cause of death from MS was suffocation due to the MS Hug. This is not true. I have yet to find any evidence of a single death due to the hug, no matter how much you may feel like it. Can the MS Hug kill you? I don’t think so, but in a serious episode of it you will face very high blood pressure from pain and you may hyperventilate. Suffocation? No. Feeling like it? Yes.

Gilenya (Fingolimod)

As it turns out, similarly to my father’s results with Avonex, Rebif has caused my liver enzymes to shoot up to about 3X the upper limit of normal in the span of slightly less than 2 years. My options?

1) Tysabri : the risk of PML is too severe for me to brave this drug – reputed to be a risk of death or severe disability as high as 1 in 200 for some individuals and 1 in 2000 for others
2) Copaxone : statistically slightly less effective than interferons – works great for my father but I truly don’t want to do a daily injection except as a last resort
3) Gilenya : aka Fingolimod – when this was first approved by the FDA I wrote a blog post to summarize all the information I could find – it is the only oral disease modifying drug for multiple sclerosis – DING! DING! DING!

I have chosen to switch to Gilenya.

My neurologist says I will be his third patient to begin the process. In order to be approved I have to go through a handful of doctor appointments. The process reminds me a little of Scott Pilgrim vs. The World and so far has involved about the same volume of blood. I’ve seen a GI for my liver enzymes and he has put me through a round of blood tests and is checking for tumors just to be certain that the interferon was the sole cause of elevated enzymes. My optometrist will have to check a few more things than in a typical exam. My heart will need to be evaluated due to the risk of heart issues during the first dose. Saving the best for last – I have to lower my liver enzymes before starting the drug by ceasing interferon (no more shots!). The first time I take Gilenya I will have to spend the day in my neurologist’s office — if my heart rate drops I have to run in place to bring it up.

My father tells me that I will feel fantastic after I have stopped taking interferon for a couple of weeks. This is believable for several reasons – a fully functioning liver is probably a good thing, having interferon and its resulting flu symptoms out of my system is bound to be great, and my relief at the moment my neurologist told me to stop the injections made me realize how stressful the constant looming injections have been.

There are more risks with Gilenya than with the interferons and Copaxone, but I think I will fare pretty well. If I develop macular edema (0.4% chance), it may be possible to reverse. Other significant and potentially life-threatening problems can result from cold sores (I don’t get them) and chicken pox (had it when I was 12).

It certainly isn’t completely safe, and it can raise my liver enzymes as well. If it does, hello Copaxone. In the meantime I am extremely optimistic even if everyone else seems apprehensive. The most recent edition of Momentum magazine outlines all the MS drugs currently in the pipeline. Some sound great, some sound dubious. Having traveled once with prefilled syringes, I hope that this medicine will work out and I won’t have to do that again. This isn’t all about convenience and pain, but there’s no denying that it plays a large part in the decision.

Having had an exacerbation a few weeks ago, followed by Solumedrol infusions and an MRI the next day, I do wonder if I’m as responsive to interferon as others might be. No drug will prevent all attacks, but it’s possible that Gilenya could be more effective for me than Rebif. If all goes well, and especially if all goes terribly, I’ll try to chronicle how things progress with Gilenya here on the blog for anyone who may be considering it. Certainly, anyone would prefer more research and anecdotal information before committing to a drug like this. But my liver says it’s time to switch and it really is one of those important organs. Wish me well!

UPDATE

Since this post I have fought my way through the insurance and approval battle and have begun the medication. Please feel free to see my additional posts regarding this.

Money Makes the World Go 'Round!

It’s hard to believe that ten years ago today I married my best friend. Not to get all sappy, but I think it’s worked out pretty well! In fact I found some statistics on Wikipedia (if you can trust it!) that say we’re over the hump. I attribute our marital success (hey let’s be honest, it’s not always bliss) to a lot of things I’ve talked about at length before.

As we move along another year I have come to believe one of the most important components to any marriage is always going to be financial. Rounding our 10 year mark has coincided perfectly with the two of us meeting many of our financial goals. It wasn’t easy, but it’s incredibly satisfying. Making decisions and working diligently together to make things happen has brought us even closer. This has given us peace of mind and has made us excited about our next goals.

In the last two years I’ve started becoming more involved in our finances, doing lots of reading and research, and working on an investment strategy for our retirement planning. Since money is one of those necessary evils which keeps you both from doing what you want all of the time it’s important to put together a plan that minimizes it’s impact on your relationship. Just some notes on how we handle things:

• Just before we got married we started consolidating a lot of our finances. We’ve had a joint bank account since then and we’ve always taken out car and home loans jointly. I know joint finances don’t work for all couples but since we’re both working towards a common goal our thought is this helps us to keep each other accountable for our successes and failures.
• On that note we did not do as well with credit cards. For years we kept separate credit cards. When I discovered Mint and I was able to see that we weren’t being quite as accountable as we hoped I also discovered we could be saving A LOT of money by using rewards cards instead of our current cards. For years we had been using credit cards to buy everything and paying them off at the end of the month. The only thing this was doing was keeping us from having to carry around cash. We made the switch to two joint rewards cards with cashback. (One of them even paid cashback to the principal of our mortgage!) This helped us get a better idea of what our typically monthly expenses were so we could start looking for places to cut back.
• Trust and compromise is key. No matter how wonderful your plans are, your partner can find flaw in a second. Different goals will have different emotional connotations for a person. While having a well funded emergency account might be what you need to sleep at night, paying off the car as quickly as possible may be the most important thing in the world to your partner. Don’t ram a brokerage account down your partner’s throat! Compromise on another goal that may not be your first choice! To quote one of our favorite shows, Star Trek Enterprise:

“I believe someone once defined a compromise as a solution that neither side is happy with.”

“In that case, these talks have been extremely successful.”

- Captain Jonathan Archer and Commander Shran

• Resolutions, promises, and the ilk don’t ever work. Set challenging goals. We’ve had more luck setting goals than anything else. The more challenging the goal is the more of a game we tend to make it and the harder we work to achieve it.
• Run your finances like a (successful) business. You can bet companies like Apple don’t fly by the seat of their pants when it comes to the ledger. They have billions of dollars on hand and are poised to weather any financial upheavals. You can also bet they have a 5, 10, 15 year plan and you’ll need one too if you ever want to retire! Right now we have a tentative 2 year plan, but we’re working on a 5 year plan that we’ll no doubt have a pretty clear picture of by the end of this year.
• Shop for quality and value. The perfect is the enemy of the good. I am a terrible perfectionist and part of my journey in the last two years has been trying to break myself of the habit of not being happy with something unless it is perfect. I do however spend more and will always do research to buy the best quality at the best price point. A business doesn’t buy disposable things and neither should you. It’s easy to find yourself drowning in belongings you don’t truly want. Our entire economy is built around disposable junk, but if you are willing to look you can still find quality, just be prepared to spend more.
• Be persistent. You don’t get where you are going by making huge changes for a month and ending up right back where you were or by saving big on the large things and ignoring the small. You need to make challenging goals that require big changes and you need to be persistent. When you think you’ve cut out all you can, look again! You may be surprised!
• To the last point, understand that this is a journey, and you should enjoy it! Don’t make yourself miserable trying to meet your goals! Reward yourself from time to time and it will give you the encouragement to continue! When you see yourself meeting and surpassing these goals you’ve set it makes it all worthwhile.

If you really love each other and want things to work financial health is just as important as emotional, sexual, reproductive, or any other kind of health you hear people discussing when they are married. Financial problems can cause a lot of stress and strain on a relationship and it will definitely dull the shiny newness from your marriage when you’re fighting about it.

Thanks for 10 wonderful years Sara, I can’t wait to see what the next year brings.

Will & Sara at McPherson Park in Greenville, SC

As of today Sara and I have been married for 9 years! It’s been a long road and I can’t believe all of the things we’ve seen, said, and done. Some days I feel like we’ve always been together and others it feels like no time at all. One thing is for sure, I am the luckiest guy in the world.

On January, 19th 2001 we piled into Sara’s white 1991 Mitsubishi Montero with Ben Chabot and his then fiance Caitlin and drove to the Little Wedding Chapel in Easley, SC. I remember our family and friends packing into the woefully small chapel and laughing with us through the next 30 minutes of comedy gold.

Highlights:

• Meeting the minister minutes before the ceremony in his bright yellow plaid suit and matching bowtie; (un)fortunately(?) he wore a robe for the ceremony
• Sara’s mother thinking that her father had already, “given away the bride,” but not heard it as he is somewhat deaf and whispering very loudly while crouching and tugging on him to sit down
• Sara and I being forced to stand and bend uncomfortably over the kneeling bench we asked be removed several times. That’ll show them! We’ll stand and bend over you uncomfortably!
• The operatic rendition of the lords prayer with trademarked country twang played on a cassette deck that had the entire chapel in peals of laughter by the end
• My botching of my vows, “with this ring I be wed…,” WTF was I thinking?
• Being trapped with my Grandmother Byrd during the reception who I believe was still convinced that I was either gay or had impregnated Sara and was forced to marry her; I still cannot understand how these conflicting ideas can occupy the same place in anyone’s head…
• Sara being trapped during the reception with a mutual friend who had been gone all summer and was desperately in love with her
• Sara’s Dad is the spitting image of Norm Abrams. I’m not kidding. My Grandfather Wayne is quite the furniture builder and artist and was convinced we had no small celebrity on our hands and felt compelled to introduce himself and discuss his love of the New Yankee Workshop. Both men are slightly hard of hearing so the conversation went something like this:

Grandfather Wayne: “I’m Hugh, Will’s grandfather.”
Sara’s Dad: “No, I’m Sara’s dad, Jerry.”
Grandfather Wayne: “No, I’m Hugh, Will’s grandfather.”
Sara’s Dad: “No, I’m Sara’s dad, Jerry.”

x20 or so until Sara walked up and straightened them out…

• Being pelted by birdseed so hard it left marks and Sara shaking birdseed out of her over styled hair for about a week after
• Leaving the wedding with Ben and his fiance to head home for champagne
• Champagne had been left in the freezer by someone and exploded into champagne slushy
• Going to Nick’s Tavern to drink with some friends when your freezer is full of champagne slushy
• Getting almost too drunk to consummate your marriage and finally managing it way too late above the heads of your best friend and his fiance who for some reason were spending the night

One would marvel that the marriage lasted the first night. As I read this back to Sara now no one is more surprised than her that we made it past that first night when at my parents dropping off my Dad’s tux and she finds out Ben and Caitlin are spending the night. Our wedding night. Good god, what was I thinking. Fortunately our honeymoon was much better and salvaged my bumbling during our wedding. We spent 4 incredible days at Hidden Mountain Resorts in Sevierville, TN. Our ride up to Sevierville was treacherous and beautiful. It started snowing in the mountains of NC and things got cold and icy very quickly. The poor Montero had a time on the mountain hills and when we finally got checked in we were pretty much snowed in. It was a great time and just about the only real vacation we’ve had since we’ve been married. The few times we made it out were for a few nice dinners and games at some arcades near Pigeon Forge.

At any rate when we got home it was back to work and things weren’t peachy. Sara and I were poor and it sucked. We were living in Government housing and barely making livable wages. We both had insurance thanks to my job but things were uncertain as the company had just filed Chapter 11. Sara was working for her parents at their Frame Shop and making more than I was. I decided things needed to change and started looking for new work. Fortunately for me an old classmate from High School IM’ed me day and told me he could get me a job in Greenville, SC with Trivergent. Trivergent was a communications company that was having financial problems but were in the process of being acquired by Gabriel Communications in St. Louis, MO. I figured moving from a low paid job with no security to a higher paid job with slightly less security was a no-brainer and we packed up and moved to Greenville. Sara’s drive got shorter and I walked to work from a cheap condo we rented downtown Greenville on West Earle St.

During the early years of our marriage I honestly can’t understand why Sara stayed with me. Maybe she saw there was some raw potential there but at 21 I was insufferable. I thought I knew everything and never thought for a second before making it known. I’m convinced I drove away some people I was really close to because of my attitude. Fortunately she worked through the process of growing up with me and I learned the world wasn’t black and white and it was possible to see things from another perspective. We had long conversations about what we could do to improve our relationship. Sometimes we’d stay up and talk about it all night. (We did this about two weeks ago in fact!) At some point I decided I wanted to be a better person for her and started work on improving my less than desirable qualities. It’s not been easy but compromise is the name of the game. If you love the person you’re with don’t you want to be worthy of their love? Don’t you want the last thought in their mind when they fall asleep that they’re glad to be with you and not, “That asshole forgot to fold his clothes again?”

Things worked out and the new company became NuVox, Sara started working there, I was rapidly promoted, we both learned an incredible amount about telecommunications, the Internet, and mergers and acquisitions, met some terrible people and some of the best people we’ve ever known. In the last 9 years we’ve started two failed businesses but are still trying, moved five times, bought a house, bought two new cars, been introduced to the amazing Siamese breed, enjoyed a short time with our first Siamese, lived a melancholy and sometimes downright painful year and a half with our second Siamese and his bout with lymphoma, learned to live with Sara’s multiple sclerosis diagnosis, taken each other to the emergency room, and so much more than I could ever cram into one sentence. What have we learned from all of this?

When I look back on the last 9 years I’d say that demolishing the typical husband and wife roles has played the biggest part in keeping both of us happy. She’s my best friend, my confidant, my partner, my love. Not my cook, maid, chauffeur, dishwasher, or slave. I can wash the dishes or cook dinner and she can work 80 hours a week and bring overtime when we need it. I don’t own her and she doesn’t own me and neither of us does these things because it’s, “the husband’s/wife’s job.” We do them because they have to be done and we understand how it feels when you’re doing them by yourself and the other person doesn’t help.

At the end of all of this exposition I can sum up the key to our successful marriage in one sentence. This is not all about you; don’t be a selfish ass. I think far too many people forget that in a marriage you can’t always control what the other person is going to do or think or feel and you have to be able to truly understand and live with that, rational or irrational it may be. It’s all about the patience and willingness to learn, understand, and grow with your partner.

I know you all probably read this far hoping that you’d get some quick and easy tips to make things better at home so I won’t stiff you. For 9 years here are 9 things that have made things immeasurably less tense in the evenings:

1. Mint – Until the end of 2008 Sara managed the finances by herself. She did a great job on her own but she couldn’t say no to me and I had no idea what our finances looked like. At the end of 2008 when she was diagnosed with multiple sclerosis she made me sit down and look over them with her and I promised I would be more involved so she wouldn’t feel like, “mean mommy,” when she had to say no. Mint let us import all of our financial accounts into one portal where we could quickly and easily extrapolate where our money was going and what we needed to do to get our finances working better for us. If there’s a better tool out there I haven’t seen it yet.
2. Dishwasher – Moving into a place with a dishwasher eliminated the biggest point of contention between us. Who’s doing the dishes? You might not think about it much but consider this; doing the dishes for a regular meal that you cook for two people takes just about as long as when you cook for 4-5. You typically use the same amount of pans, skillets, measuring cups, etc. as you would for cooking a larger meal and these are the things that take the longest to clean. Buying a dishwasher gets you back 45 minutes to an hour of time every evening you’d otherwise spend washing dishes after a meal. Over the course of a year that’s about 15 days of time each year you could be doing anything else.
3. Keeping each others secrets – If I told you my wife would kill me…
4. Cats, cats, cats, cats, cats, cats, cats, and more cats – They are ridiculous, loving, fun, and they lower your blood pressure. You can also blame them when someone passes gas.
5. CatGenie – Seriously, with all those cats, who really wants to scoop litter? Let them use their own cat toilet.
6. Working Cars – So many other things are broken, do you really want to be stuck in the house when your air conditioning is broken because you wanted to save $500 at the dealership?
7. Comfortable Bed – It’s hard to be mad at each other when you’re falling asleep in a comfortable bed
8. A great sense of humor, especially about each others’ neuroses
9. Common Enemies – Fighting against a common enemy or problem is the first step towards working together!

EPILOGUE FROM SARA, WHO JUST DISCOVERED THAT SOME OF HER FAMILY MEMBERS READ THIS.

Hi everyone! Silly Will — I’m actually a virgin and have never even tasted alcohol. Love you!

MRI images from the side make you look like a monster!

My first year of MS diagnosis wrapped up about a month ago and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially. Here comes the first downer post of 2010!

No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.

For the newly diagnosed:

• Find a neurologist you like and trust. Don’t be afraid to switch.
• Most of your problems are invisible – don’t expect anyone to understand (sorry).
• Whatever feels unbearable right now will probably pass.
• Watch the webcasts, listen to the podcasts, and get Momentum magazine.
• Stay out of the heat at all costs.
• Holistic remedies are not proven to be effective. If it sounds crazy it probably is.
• Neurologic problems and muscle relaxers often lead to sleep apnea.
• Common MS symptoms are : fatigue, lack of balance, random pain from innocuous stimuli, spasticity, blurry vision, vertigo
• There are several types of MS. Relapsing-Remitting means you have an attack and then heal to some degree. Progressive means you have a gradual loss of ability that does not heal. Some people with relapsing-remitting will then develop progressive MS
• Deaths resulting from MS are usually caused by liver failure resulting from Interferon or by infection due to lack of mobility. In general your lifespan will not be shortened.
• You absolutely will never get the reaction you expect or desire when you tell someone about your diagnosis.
• No two people with MS will ever have more than a passing similarity of symptoms or progression.
• Caffeine makes all symptoms worse.
• You will eventually develop a sense of humor about what you’re going through. That doesn’t mean you won’t freak out from time to time.
• Cats are good for people with health problems. Really. My neurologist has a whole poster up about it.
• Everyone needs a “care partner.” Will has been amazing to me. Amazing.

I had dealt with spasms in my right eyelid for about a year when I went to my optometrist.  She decided that it was more than just stress and referred me to a lid specialist who treated me with 3 sessions of Botox injections over the course of nearly a year. Every time the Botox wore off the spasms would start again, so we pursued an MRI to check for nerve damage. I have a family history of MS – my father has it as well as 2 of his sisters.  The lid specialists said that he had about 20 new patients every week who needed Botox injections to stop those pesky eye twitches and none had ever had MS.

Being extremely claustrophobic I requested an open MRI. Having now had both an open and closed MRI I just recommend the closed one. Open MRIs are really not that “open” and take less detailed images. The MRI takes a long time, the contrast fluid feels terrible, and when you ask the tech if they see anything unusual they will lie badly. The best description I can give you of the sound is that it reminds me of some industrial music I’ve heard. You have to keep your mind occupied during the hour or two you’re in an MRI – being fascinated with myths I think I told myself the story of Isis and Osiris both times.

When I filled in the pre-MRI paperwork there was a list of things that can be caused by the contrast fluid – difficulty speaking, walking, etc etc. As I got out of the machine I felt immediately odd and discovered that when I tried to talk I couldn’t pronounce words correctly. Over the next few days my pronunciation deteriorated as did my handwriting and balance. From an outsider’s perspective I’m sure I seemed drunk. I began to think this was more than just the contrast fluid. We went to Virginia to visit Will’s brother, sister-in-law, and newborn nephew that weekend and I found myself having trouble with everything from brushing my hair to applying mascara. I was afraid to hold the baby much in case my arm betrayed me. On the drive back my arm suddenly became weak. Within the next 2 days I had paralysis in my right arm and hand and in parts of the right side of my face.

When I returned to work I was faced with a voicemail confirming my MS diagnosis, a referral to a neurologist, and an email sent to my employer’s mailing list about a coworker whose wife had taken her own life because of MS.

Filling in endless paperwork is great fun with a mostly paralyzed hand. The best way I can describe this is if you’re holding the eraser end of a 2 foot long pencil. Typing and using a mouse were nearly impossible, no one could understand me when I talked, and I couldn’t write legibly. Communication was difficult for weeks. My initial research told me that MS was a painless disease and that it doesn’t decrease your lifespan. That people who live near the equator don’t get it. That 15% of people with MS commit suicide. That 400,000 people in the US are diagnosed with it. Don’t tell your boss about it, and don’t expect anyone to give you the reaction you want when you tell them about it. There is a difference between MS symptoms and an MS attack. MS Symptoms : fatigue, lack of balance, random pain from innocuous stimulus, spasticity, blurry vision, vertigo, etc. MS Attacks (or exacerbations) : When a new, more permanent symptom occurs suddenly and lasts for more than 24 hours (like paralysis, muscle weakness, blindness, etc). I learned that there was something called an “MS Hug” but couldn’t figure out what that was. It sounded cute!

I had to tell my boss. I would be fired unless I explained why my productivity halted and I seemed drunk. MS is a TOTALLY painful disease. And a recent study reports that about 1 million people in the US have some form of paralysis from MS, so there must be far more than 400,000 with it. The first worry I had was that I would be such a burden on my husband. How long could I work? Only 30% of people diagnosed with MS can work, and even if I could how much worse will his life be with a disabled partner? My father has MS and so do I. Will my brother be the next to be diagnosed with it? My nieces? Then I worry about healthcare. When something like this happens to you the health insurance industry looks VERY different very quickly. I find myself with a huge crush on Britain’s healthcare system. Since Obama’s election stem cell research with regards to MS has made vast leaps. What happens next election if it’s suddenly banned (again) and our greatest hope for a cure vanishes (again)?

My first neurologist was terrible. He was dismissive, unhelpful, rude, and racist. After my first appointment with him he had me begin a steroid infusion on-site. The Solumedrol burned like fire going into my veins and made me taste metal for hours afterward. As I walk out I grab what looks to be a very encouraging publication on MS. Turns out a woman is celebrating all that she’s gained from a life of MS : a husband who has been there for her after she lost her house, most of their furniture, turned to welfare, and she can no longer leave her bed. Whoever approved that article needs to be flogged.

As new nerves began routing I could gradually speak more clearly and write a little better, but progress was like watching grass grow. Suddenly my fancy new nerves went mutinous. While I didn’t have strength enough to hold up a toothbrush with my right hand I would have a cramp that would close my fist so hard I made my own palms bleed. When I was in crippling pain 5 – 7 times a day with unbearable muscle cramps all down the right side of my body he shrugged and said maybe we could do another MRI. Then he found occasion to make fun of Native Americans after noticing on my chart that I am part Cherokee.

I discovered there was another neurologist in Greenville and promptly switched. I love my neurologist now. He reviewed my MRI and told me I had 4 lesions but that I should get a spinal tap to ensure that my insurance would pay for treatment. He prescribed Baclofen (a muscle relaxer) for the muscle spasms.

The spinal tap was interesting. I thought it would be quick but it was not. He made sure Will was sitting down because apparently husbands tend to faint during the process. He painted my back with something – iodine maybe? He joked about how he was a great target painter. I asked how his aim was. He said not to worry about that. Spinal taps feel crazy. Having a needle jammed between your vertebrae feels exactly like having a needle jammed between your vertebrae. The metal conducts electrical signals which shoot down your legs. You have to wait for fluid to slowly drip out until several vials are filled. Spinal fluid is basically blood without the clotting agent. With no clotting agent it takes a long time to heal and may continue to leak out after the tap. This is why headaches are common after this occurs.

Baclofen was a mixed blessing. Starting it caused the cramps to worsen dramatically. In one day it happened over 30 times before I went to the ER. After ramping it up for several weeks I still had muscle spasms and cramps, but not in the unbearable way I had before. It made me drowsy and loopy. I fall asleep multiple times a day and it was a month before I could safely drive a car. I began taking Rebif which is a disease modifying drug. This means it lowers the occurrence of MS attacks (by about 30%). Without insurance coverage this would cost me about $7000 for a 3 month supply. With insurance it costs $200. They sent a local nurse out to show us how to use it, and it comes with an auto-injector. Feels like a bee-sting going in, burns like poison once it’s under the skin. The injection sites look like I’ve been hit by a baseball. I give myself injections Sunday, Tuesday, and Thursday. The cats have learned to stay upstairs while I do this. Will has learned to wait till it’s over to ask if I’m okay.

Progression was very slow. Over time my handwriting returned to something like normal. Because I was using new nerve routes, there were times when addressing an envelope or writing out a check left me breathless and exhausted. I had been damn good at guitar hero (in my humble opinion) but my lack of coordination now relegates me to Easy Mode. I realized how much time I had wasted not writing, playing piano, drawing, etc. when I had the ability.

In autumn I finally learned what the MS hug is and it is not cute. It feels like you’re being squeezed to death and the pain is so intense it causes me to vomit. I nearly cried with joy in the ER when they brought out a tray of 7 (SEVEN!) mystery vials to knock me out with. I never even felt them put in my iv. The cure for the MS hug? Lots of Valium. Lovely, lovely Valium.

Less than a year after my first attack, which apparently began literally inside the MRI machine, I had a second attack following a bout with the flu. Apparently the flu often precedes an MS attack. This time it hit my right leg mostly which leaves me unable to walk far. Instead of having on-site steroid infusions I was sent to St. Francis for it. They are great. You get a nice little room with a TV and they dilute the stuff in a solution which isn’t painful at all and hardly tastes of metal. My recovery thus far has been like lightning compared to my first attack.

That brings us up to speed. It’s not fun to live with and, at least for me, the daily symptoms are more of a nuisance than the exacerbations. There are things I can do to help myself that I don’t. But I’m going to. New Year’s resolutions usually fall by the wayside, but here goes anyway :

• Regularly practicing hatha yoga improves balance and reduces spasticity. Mindfulness exercises such as this also improve your outlook and focus in daily life. I will (for real this time) start a yoga routine.
• Meditation and guided imagery help reduce the stress and improves the mental outlook for those with MS. I will (for real this time) start a meditation routine.
• Eating certain foods that reduce inflammation may contribute to less frequent MS attacks. I will (for real this time) start following a diet.
• Stress can lead to psuedo-attacks. I often joke to Will : “Don’t make me angry! You wouldn’t like me when I’m angry! My vision goes blurry and I fall down a lot!” I shall strive for apathy when people let their toddlers wander into the street or bicyclists scrub my car when weaving through stopped traffic.

Hopefully these changes will help slow my progression of the disease. More information is available on almost a weekly basis about MS, and misinformation is probably even more common.  As I weed through it all I will post the gems here. Let’s all hope for a cure soon — or even three!