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.

Today I received my first phone call from Gilenya / Novartis, one month and three days after submitting forms to them. Nurses are specifically assigned as case managers to patients and stay with them at least through the process of getting started on the drug.

The call mostly consisted of me answering questions about my health history and current doctors. How long have I been diagnosed with Multiple Sclerosis, have I had recent vaccinations, etc. We went over the tests I would need to complete before the first dose, and she told me that they were still undergoing a “benefits investigation” to determine if I was eligible to receive the drug.

The nurse was extremely nice and sounded knowledgable, at least pertinent to the contents of the conversation. I wish I’d had the forethought to prepare any questions I might come up with ahead of time – I had begun to doubt that I would have any direct contact with the company again.

She did tell me a few things that I did not know before this call :

• There is a “two week rule” for Gilenya. If a person on Gilenya stops using the drug for two weeks, that person is required to undergo the entire approval process again to restart it – vision tests, EKG, blood tests galore, monitored doses in a doc office, etc…
• Although Will and I don’t intend to have children, it will probably interest anyone who is thinking of starting the drug that if a pregnancy occurs while on Gilenya / Fingolimod there is a registry they want you to join so that they can follow your progress. (PS – You should really try to NOT get pregnant on it)
• Any vaccinations must be cleared with a neurologist to ensure that no live virus vaccinations are administered (viral infections usually trigger MS attacks).

Finally, I have permission to contact Gilenya / Novartis and proceed with all the tests necessary to start the drug.

Pâté

There is some good news in my quest to start Gilenya – and it really is starting to feel like I’m seeking the holy grail. On the day I ceased Rebif I also saw a gastroenterologist for my elevated liver enzymes. The tally so far is $800 for the consult, $600 for the results, and forthcoming bills for some blood tests and an abdomenal ultrasound. Results are that I am clear of all liver diseases – he seemed disappointed.

In hindsight, I should have just waited to see the GI. After almost a month of being off Rebif, new blood tests reveal that my liver function is almost back to normal. Previous tests actually showed my enzymes at about 6 to 7 times the high limit for normal, which was worse than I had known. Now I am only a few points out of bounds. Time should take care of the rest.

A lot of relief came with this news. Also, I can’t stress enough the lack of stress that comes with knowing that I don’t have to take a shot every other day. So, now that my liver is suitable for sustaining human life again I’m hoping that I also won’t have to switch to the daily Copaxone injection.

Unfortunately, all that I’ve heard from Gilenya is that they would have someone return my call about a week ago. Which hasn’t happened. However, apparently they have been calling my doctor. So, while they won’t speak to me (the patient), I have heard through the grapevine that they are in the process of negotiating with my insurance company. Perhaps this is why the insurance company has started sending me packets notifying me that they have assigned an advocate for my “complex health issues.” While I appreciate the advocate, it does sting a bit that the insurance company has to hire nurses to fight them for my healthcare.

My optometrist completed all necessary vision tests last week. My neurologist has ordered some additional blood tests and an EKG. Then I will plan to spend 2 days in his office to be monitored for my first 2 doses in April, assuming that insurance approval has completed. The process must be difficult for everyone involved — my neurologist’s office staff look as though their blood pressure skyrockets every time “Fingolimod” is uttered. However, finally, everything looks to be in order. Unless, of course, you consider that no one at Novartis seems willing to speak to me (actually, I was sent a mailer today with their phone number if that counts).

Their general silence has begun to shatter my confidence in the drug. Are they just overwhelmed and have no time for new orders? Have they just hired employees who are still getting used to the process (of using a phone?)? Or, more importantly, are they intentionally slowing Gilenya’s introduction to the market for fear of discovering new side effects or higher occurrences of known side effects?

Let’s hope they’re just overrun with orders. Optimism remains… for now….

Tick Tock, Gilenya, Tick Tock

Almost two weeks ago I posted that  I was in the process of switching to Gilenya. Not so fast, I suppose. My neurologist’s office staff was eager for me to let Gilenya set up all of my doctor appointments for me to undergo the necessary tests. By their accounts they faxed in my information the morning I was in their office, and then a few days later when they hadn’t heard anything back. And then again when I called them after a very unproductive phone call with Gilenya.

Several months ago I switched positions within the company to work in a 24/7 network surveillance group. We rotate weekends, leaving me with a “weekend” during the week for a month here and there. I had hoped that I could use these days to get through all of my doctor appointments this month. But the opportunity to accomplish that is rapidly vanishing.

When I gave up on hearing from Gilenya, I called them. I was not in their system and was told either the doctor had not sent anything or that it can take a couple of weeks for someone to process the fax from my doctor. The representatives also advised me that I should just setup all appointments with doctors and for tests myself as it would take a long time if I relied on them to do it. They then told me that they also would not order the tests, that my neurologist had to do that anyway.

At this point, I wanted to cut Gilenya-The-Company out of the process of getting to Gilenya-The-Drug. I called my neurologist and asked them to help order the tests from my primary care physician so that I could get started without waiting for Gilenya. This is when I discovered that they rely on Gilenya to negotiate approval with my insurance company.

So, with no tests ordered and no response from Gilenya I am simply waiting to see what happens.

There’s no denying the dual frustration of having to wait for faceless others somewhere to get around to my file while I effectively become unprotected by any DMD having already stopped interferon treatment. Hopefully my next post will be good news rather than more of nothing.

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.

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!