From Ms. to MS

Every year around my birthday, I like to look back at the year and blog about it. New opportunities, risks taken, failures and successes. Well this year was no different, including all of the above and more. A new home, the loss of a family member (Curtis's Grandma Myra), and a beautiful new ring on my finger. While my 31st year of life had lots of ups and downs, one certainly stood out from rest; this was the year that I found out that I have Multiple Sclerosis (MS).

What is MS?

In the four months since I first heard the phrase, "You are presenting signs of MS," I have done a lot of research on the disease and the best explanation I found was on another MSer's blog:

"Take a peek behind your television. There are likely a bunch of tangled cords feeding out from your Blu-ray player, cable, speakers, gaming console (or if your household is anything like mine, SEVERAL gaming consoles), rabbit ears, maybe a VCR. That tangled bunch of cords is your central nervous system. Your nerves transmit signals and messages from Point A to Point B. Like the cords behind your entertainment center, your nerves have a protective insulated coating around them. That’s called the myelin sheath and it facilitates the sending and receiving of electrical impulses.

Now imagine that your asshole cat goes behind the TV and starts chewing on the cords. You’re hopelessly engrossed in season three of Dance Moms, so you don’t notice right away. Eventually you realize that your asshole cat has chewed through some of the coating on several cords, leaving behind patches of exposed wire. These are called lesions. You’re relieved to discover that all of your appliances still seem to be functioning properly–for now. Down the line, however, you may notice that the picture on your television is distorted or fuzzy. You may notice that the sound from your speakers is tinny or garbled. You may notice sparks coming from the cords or outlets in the wall. Or maybe your appliances stop working altogether.


Your asshole cat is Multiple Sclerosis."

I think that pretty much explains it, don't you?  From your eyesight, to being able to use your legs or arms, to speech and cognitive issues - all of the actions that we can take for granted can be impacted by MS, sometimes for a few weeks, or a few months, or for years. The goal for anyone with MS is to get out in front of the disease and try to use medication to keep it at bay. This can be a hard task as each MS diagnosis is like a snowflake, and no two patients are the same. One person may never show signs again while on medication, while another may end up losing a lot of their mobility. There isn't a set path or progression with MS, so we are left to hope that the medication chosen will keep it all at bay.

Me and My Bum Eyeball

When it came to my MS, it started in early August when I began losing sight in my right eye. What started off as a blurry smudge quickly spread to losing more of my sight and it was painful to move my eye. It was when I was back at my eye doctor's office that I realized I could no longer see color. Well crap. With no colors and no clear picture in the one eye, it was like trying to watch Wonder Woman on a black and white TV when you were used to HD. It was while I was at the ophthalmologist that he told me that I most likely have Optic Neuritis (ON), an inflammation around the optic nerve, and that I would need an MRI to show them more about it. Then he said it, "This could be MS." My heart sank. While I was getting an answer about what was going on, it wasn't exactly what I was hoping for as a response. 

I was instructed to head to the University of Iowa Hospital ER as it was the quickest way to

get an MRI done and to start treatment for the ON. My MRI showed some possible lesions on my brain that could be from MS or from migraines or something else, so I was admitted to the neurology floor for three rounds of IV steroids during my four-day stay at the hospital to treat the ON. I also had the pleasure of experiencing my first Lumbar Puncture (LP) which is not the best experience to have. FYI - when you are at a medical school hospital, they like to have the med students "learn" before sending you over to the clinic to have a robot help.  Needless to say, I helped educate three med students and a resident doctor by showing them that they indeed cannot do a lumbar puncture. My dreams about being in the show "Scrubs" were coming true but not in a good way. Anyway, the LP came back showing that I had elevated levels of a specific band that can indicate MS. 

MS is hard to diagnosis as there isn't a test that you can take; it is more like a mathematical equation to complete. Lesions + elevated bands in spinal fluid + symptoms = MS...most of the time.  A true MS diagnosis comes after a second symptom appears, such as losing feeling in your limbs or speech issues, so in the meantime the idea is to treat you as if you have full blown MS.  It can be kind of confusing but the idea is to start treatment before a second symptom appears and stay ahead of the game as best you can while having regular MRIs to watch for lesion growth.  Does that mean that someone could be treated for MS and not actually have it?  Yes, but the percentage of that happening is low.  Until there is a true MS test, this is the reality for treatment.  As for my case, I have been told I have a mild case as of right now, only a few lesions, which is a good thing. So following my rounds of 'roids and the LP, I was sent home to rest and recover with the hope for more answers at my follow-up appointment in three months.  *For those interested, the blog before this one goes into a little more detail about my hospital stay.

Side soapbox - anyone who tells you that you need a ring to prove your partner's commitment is a liar. You need a medical emergency. Seriously. It isn't the most romantic of situations to be in but it will tell you a lot about your partner. Curtis spent the first night with me in the hospital, rubbed my hand as I had my first round of steroids and shared a hotel room with my parents as we waited for more information and steroid rounds. A ring cannot do any of those things, only a real person can. After all that happened, any doubts that lingered about our relationship were silenced with duct tape, and while others constantly asked about when we were getting engaged, I knew that we were married right there and then in that hospital room - in sickness and in health. Curtis never ran, never said that it was too much for him. He sat down, started taking notes and talking to the doctors while being supportive. You don't need to prove commitment to someone with pretty things; it is their actions that will always speak louder than their words. Now, excuse me while I get off of my soapbox.      

So where were we? Aw yes the rest of Fall.  It was in late September that I saw a blue sparkle that even my bum eye could figure out was an engagement ring.  Curtis asked me in the middle of our sunlit living room if I would marry him, and I happily agreed!  October was consumed with contacting friends with our wedding news and planning for the big day while having MS on the brain, figuratively and literately.  The month flew by and before we knew it, November was here along with my follow up appointment at the U of Iowa.  We had been up in Minnesota the weekend leading up to the appointment for a bridal shower and deer season opener.  The weekend was filled with happy faces and fresh venison but when Monday rolled around and it was time to head back to the hospital, I found myself hiding in my childhood closet.  For some reason I thought it was a good idea to Google MS medication options at 4 a.m. and the idea of having to inject myself or suffer through possible side effects left me trying to convince Curtis that we didn't need to go, that I would be fine.  After some coaxing (and reminding myself that children with Type 2 diabetes do injections all the time and that as an adult I needed to suck it up), I left my safe place and was looking down the endless road in front of us.

While the follow-up appointment at the U of Iowa gave us some answers, it was kind of a bust. We were not going to end up meeting with any of the doctors I had seen back in August and the older attending doctor and I did not exactly jive and he did not help me feel comfortable. And while the younger resident student doctor was knowledgeable, the thought of always seeing someone different for the rest of my life made my next request a lot easier when I asked what I really wanted to know - could I be referred to a doctor in Des Moines. While I had had a positive experience during my hospital stay, the trips to Iowa City were hard to justify when we have a full neurology clinic here in Des Moines. As soon as I asked, you could see their reactions. The older doctor told me that was fine, it would make it easier for them anyway, not really the response I expected, but I took it. They gave me their recommendations for medication but said they would leave it up to the doctor in Des Moines and left it at that. It wasn't until we spoke with the nurse that we received some good news; one of the past resident neurology doctors at the U of Iowa recently moved to Des Moines and was accepting new patients. So I could have a doctor that knew the team I had seen when I was admitted in August and he would only be a short drive from my home.  Best part - his last name is Kahout. A doctor that could make me giggle simply by having a fun last name seemed like someone I needed to meet. A week later all of the paperwork was sent over and an appointment was set for me in mid-December.

Also in November, I had an appointment with a neuro ophthalmologist at the U of Iowa who would look specifically at my Optic Neurosis - this appointment went MUCH better! I completed vision tests and had photos taken of my eye; everything was healing nicely and I had 20/20 vision again. I still lacked a crisp picture in my bum right eye, but I could see and could see color again, although it remains difficult at times. It was shared with me that I was recovering really well and my vision could continue to improve or it may end up lacking some of the crispness I have in my good eye. We also learned about how my body temperature impacts my eye and how heat was the reason my sight would darken at times. This was all normal for MS patients and wasn't damaging my optic nerve, but was simply just a new normal for me to get used to for the time being. All of the doctors, nurses and techs that we met with that day were so helpful, warm and optimistic about my diagnosis. We left the appointment feeling more energized about everything and with me feeling better about my upcoming appointment with my doctor in Des Moines.

Get Active, Make an Impact

During the past four months, I was continuing to get used to the idea that I have MS but was still waiting for more answers, so it wasn't something I was very open about to everyone. It was hard to field all of the questions and to not take on the worries of others while trying to sort through it all myself.  So if this blog is the first of you hearing about my diagnosis, you are not alone.  Not too many people knew as I just wasn't ready yet, now I am in a better place mentally but I still may answer questions with "I am not sure, I would have to ask my doctor."

Over the past months I did reach out to connections who also have the disease to try and put some of my worry to rest. I have been told over and over again that now is a good time to have MS as there are a lot of new medications emerging and different treatment options. Having MS does not mean I will automatically end up in a wheelchair or be completely immobile but there is a possibility.  I typically do not like to focus on the possibility of that coming true and instead to focus on the day I have in front of me. Time and disease course will dictate how my disease will progress but for now, it is about getting educated, staying active, lowering my stress and trying to not get too hot.

Many people have asked, "What can I do to help?" For now, there isn't much to do. My body is still healing and dealing with my new normal (can you say, "hot flashes?"), and my bum right eye, but I have been told time and time again, stay active. Because of this, I try to go for lots of walks and I hope to get back on a bike again soon as I haven't ridden it since this all started in August, so if you want to join me for either of those activities that would be great! But if you want to help in other ways, here are some suggestions:

1. Do something nice for someone today.  From bringing your neighbor a batch of soup just because, or sharing your seat with a complete stranger, or simply asking a friend/coworker/family member how they are doing. Like REALLY doing, and then listening with intent and not trying to fix their situation but instead simply being an ear for them. These actions can all make a difference to people whether or not they are struggling with something major. A little kindness goes a long way.

2.  Get active and use your voice. I am not alone in my MS fight. I have great doctors, friends and family, but my need for affordable health insurance just went up 10 notches. I have a chronic disease that will be with me for the rest of my life or until we find a cure/treatment to end it. I am not the only one. Many Americans have health issues that will impact them everyday and with every bill that comes from their insurance company they swallow hard and wonder how they are going to pay to stay alive and get the medication and treatment that they need. Talk to your legislators now and during the election season, ask them what they are doing to help those with chronic diseases. How will they continue to improve our health care system and make it more affordable. And then thank them for their time and tell them I thank them for their service because I will need their care and understanding the rest of my life.

3. Show empathy daily.  Please remember that so many people are suffering from silent diseases - depression, infertility, MS, rheumatoid arthritis, diabetes - the list goes on. These are often diseases that show no outward signs, nothing that screams "Part of my body isn't working correctly! I need a little empathy right now!"  Instead they are diseases that can hide deep inside and the person simply may not always want to talk about it. So while questions such as "When are you getting married?" or "When are you having kids?" or "Why are you not working right now?" may seem simple, for many they only remind them of their silent disease and what goes with it physically, mentally and financially. I know that many people are only trying to be nice or start a conversation or get a point across, but the reality is that it can be hard on someone who is struggling and doesn't want to share the real reason.  This is mostly because the real reason might be that they feel like their body has failed them, and they cannot do all of those things right this minute. Instead they need to focus on getting back to being healthy and happy, as that is what truly matters.  A little empathy goes a long way for everyone - please notice I wrote empathy and not sympathy.  It sounds harsh but "I'm sorry" isn't going to change a diagnosis or a condition, but a "Hey, I won't flick you off because you took longer to back out than I was hoping because you might have just gotten home the hospital," works pretty good at making you feel better about things and lower your stress in that moment.  Be nice to people, you never know how their day has been or what mountains they are trying to climb.      

This is what MS looks like five days after your last steroid round.  What you can't see in this picture is my throbbing headache and lower back pain from the LP, bruises from blood draws and an IV, the lack of vision in my right eye, or the anxiety around being told you have a chronic disease.  This is what a silent disease looks like. 

One Foot in Front of the Other

So what's next for me? Well, a neurology appointment with Dr. Kahout next week and then an awesome party at the end of the month to celebrate Curtis and me. My plan is to use this blog to continue to post updates about my MS and the things I am learning along with other random ideas and rants about bikes, life and adventures. While I do not mind speaking about my MS, it is simply hard to keep certain things straight and remember what I told to whom, so my plan is to keep writing about it. So year 32 is here for me and I am ready - bring on another year of new opportunities, challenges and adventures!

I would be remiss if I didn't thank everyone who made year 31 truly one for the books! From hospital visits to trips to Minnesota and everywhere in between, I am so very, very lucky for everyone in my life. Please continue to send happy vibes my way and a text to say "Hi!" - I appreciate all of the love and even some of the hugs :D