My MS. The first six months.
I usually don’t go home for Christmas. As a 911 dispatcher I am typically scheduled to work and my coworkers have young kids so, I would work to allow them to take days off. Also, my family is five hours away and I live in Northwestern Minnesota where the weather at Christmas time is sketchy at best. This year though, I decided I would take the time off and make the trip. I hadn’t been home for Christmas in about 5 years…it was time. So, I took a week off just to be sure I could get home and back in case a blizzard popped up. Leading up to Christmas we had all kinds of cookies and candy brought in to work and though, I usually don’t have much of a sweet tooth I found my self unable to say “no” to all the treats. They were SO delicious! A few days before Christmas I noticed myself having some dizzy spells but I chalked it up to all the sweets I’d been eating and the caffeine I’d been drinking (tea, no soda).
Christmas Eve, Parker and I loaded up the dogs and made the long trip to my parents’ house. It was uneventful.
Dec 25. We woke up Christmas Day and ate a traditional breakfast of little smokies, bagels with cream cheese, and mimosas. About half way though my second mimosa I started to feel really dizzy and I had a hard time focusing my eyes. I thought maybe, the time had come that cocktails before noon were no longer a good idea… Perhaps that is something one ages out of? Maybe the alcohol was just too much and if I stopped everything would go back to normal.
We drove to my Aunt and Uncle’s house for the Christmas celebration with the extended family. I had a nice time but, I still felt really dizzy and I couldn’t see straight. I tried to have fun but found myself increasingly distracted by my inability to see less than two of everything.
Dec 26. The next day the double vision still hadn’t gone away and Parker and I reloaded the dogs up into the car and drove home. Once we got home, I still wasn’t feeling better and became concerned that I was possibly having a stroke. My health insurance had a program that allowed you to consult with a doctor using video chat online so, I did that. He didn’t think I was having a stroke but did feel that I should be seen as soon as possible.
Dec 27. (Saturday) When we got up the next morning we went to the ER. I was seen by many nurses, and a doctor. I had some blood drawn and then sent to have an MRI. I spent what felt like forever in an ER bed waiting for my results. It was very scary, but the warm blankets they gave me were magical (I would like my own blanket warmer for the house, please). Parker went home to feed the dogs because by this point it was getting pretty late. When he got back the ER the doctor came in and said, “Well, I’m afraid you have M.S.” I didn’t know much about the disease except for a friend from grade school’s dad had it. Visions of a future in a wheelchair crossed my mind. “Will I die from this?” I wondered. (No, it turns out, MS is not fatal *whew*). I knew my life had changed profoundly in that one little announcement from the doctor. They set up an appointment for me to see a neurologist the coming Monday and they said they wanted me to get an IV infusion of steroids that night and again the next day. I was reassured the neurologist I was seeing was the best MS doctor in the area and he could answer my questions. The ER doctor said he would be there tomorrow and to come in any time. Parker called my parents to let them know we’d been to the ER and to expect a call from me with an update.
Dec 28. My second round of IV steroids was administered in a room with four beds and plastic curtains. The original ER doctor was not there that day. While I was receiving my infusion I could hear another patient describing awful stomach flu symptoms. I’d read enough to know that these steroids could weaken the immune system and I crossed my fingers I wouldn’t get this terrible flu.
Dec 29. My brother, Jake, agreed to go to the doctor with me as I couldn’t see well enough to drive and Parker wasn’t sure if he could get off work in time for my appointment. It turns out he did so I ended up taking an entourage to my first appointment with my neurologist (who had a med student with him) it was a crowded room. Jake took notes, Parker asked clarifying questions. The doctor did some tests to see how my neurological function was. I was told the MRI found two lesions right by where the optic nerves are in the brain, thus causing the double vision. He said there were three other spots that some Drs would interpret as lesions but he didn’t think that’s what they really were. My diagnosis was CIS (clinically isolated syndrome). The neurologist decided to keep me on the steroids for three more days and then I would check back with him the following week. I couldn’t drive, much less work, so he wrote me a note.
I did the steroids and my vision returned to normal.
Jan 7 my second appointment with the neurologist . We discussed how the steroids were working and also treatment options to ensure I wouldn’t get any more lesions or relapses. The steroids were working well and we decided on Rebif. I liked the sound of Rebif because it’s made of chemicals that are already naturally present in the body. Unfortunately, it’s a subcutaneous (under the skin) injection that needs to be self administered three times a week and one of the side effects is problems with the liver that could require a transplant. So, I needed to be extra careful about being kind to my liver (drink less alcohol, take less over the counter meds processed by the liver, and have my liver enzymes checked regularly through blood tests).
Jan 9. I woke up with double vision again. The effects of the steroids had worn off and I couldn’t see again. I couldn’t sew, read, or watch tv without one eye covered. I wore out my sleep mask and invested in some eye patches. They didn’t want to restart the steroids, they wanted to wait and see if it corrected on its own. By the end of the month I was seeing mostly normally and had started on Rebif. Occasionally, my eyes would go “googly” but only for a few seconds.
I was able to return to work where I began to experience minor leg weakness but again, only for a few seconds. Somewhere in there I lost a lot of my balance and coordination.
Eventually, the leg weakness and general unsteady feeling became enough that I bought a cane. It was still winter and icy and I was very concerned about falling, the cane helped with that. Mom came up to help get the house back on track and give me some time to rest. The doctor wrote a note saying I shouldn’t work overnights any more. MS symptoms are aggravated by stress and not enough sleep so, we decided this was a good choice for me. But, it was very unfair to my coworkers.
I had another flare in March and it was decided, I shouldn’t work alone. I was put on IV steroids again. This time it was only for three days and then followed by several days of prednisone pills taken orally to taper me off. I had put in my 30 day notice at work and the stress of changing careers was blamed for the flare. Work suggested I use up my remaining PTO and stay home to recover. So, I did. This second flare was different from the first. I could mostly see but I began slurring my words and I couldn’t write…my hands just wouldn’t work. This also meant I had MS, not just CIS.
I started a new job in April, still recovering from that second flare. My words would slur at inopportune times and I couldn’t write. It was reported to my supervisor that I was slurring, this caused me to have a meeting where I was given a pile of paperwork for the neurologist to fill out indicating I could do my job and that I was not a danger to myself or others. Hearing that your employer is concerned you are potentially dangerous is a hard pill to swallow (and I take lots of pills now!) They were relieved to find out I was not abusing drugs though.
My symptoms have improved and this week I’ve found myself rarely slurring. I do get weakness in my leg occasionally but since it’s intermittent and I haven’t fallen there’s not a lot they can do for me. After a shower I feel very wobbly and uncoordinated.
The summer months are going to present a new challenge in keeping myself cool so my muscles don’t turn to rubber. A common recommendation to MS patients is to never hot tub alone as one may be able to get in just fine but not out. In fact, that used to be one of the definitive tests for MS. They would put the patient in a tub of hot water and watch for symptoms.
Most of the time I feel exhausted. I push through the fatigue but eventually I reach a point where I must lay down or risk my body saying, “No more” and forcing me to lie down by falling.
I take Cod liver oil and vitamin D daily. On “Shot day” I take ibuprofen to counter the side effects of my medication. As I write this I feel pretty good but the possibility of another flare is always in the back of my mind.
In my purse you will find eye patches and a cane. In my home there is a counter full of pills (not the fun ones either), a crisper full of auto injectable interferon, and a sharps container under the bathroom sink. I’m only 30 years old…I’m too young for this s%!t.
I have a “Care Team” consisting of my neurologist, his nurses and, I also count my family and friends as members.
I hesitate to tell people of my diagnosis (it’s not a secret though) fearing that they either are unfamiliar with the the disease or they know someone with a very aggressive form of it and imagine me being a lot worse off than I really am.
I have been told more times in the last six months that I “look so good!” Than I have ever been told in my life. You want people to think you’re hot? Get MS. It’s not that I don’t appreciate it, I do. And, I understand sometimes people just don’t know what to say, so they say something kind…I’m not trying to complain here.
I also hesitate to agree to anything too far in advance as I could wake up with a flare at any time. There is no warning. I don’t like driving too far from home by myself in case I have a flare, I don’t want to be stranded away from my Care Team.
I try to ride my horse as often as I can. Sitting on his back feels really nice on my legs when they feel tired and sore. So far he’s been pretty good to me and hasn’t been too naughty. It might be because he’s older and has mellowed out. It might be the hundreds of dollars I’ve invested in his training. Maybe we’ve been together long enough for that trust to have formed. Or, maybe he intuitively knows something is different… Who knows horses are mysterious and a little magical.
I just watched a TEDx talk by a lady who was diagnosed when she was 25. She said you can deny, cope, or thrive. I’m trying to get to the thriving part but sometimes it feels like it’s a long way off.
I am fortunate to have a good Neuro, whom I trust and who believes in “robust” treatment options (his words). And, I am fortunate that I was diagnosed so early, instead of wondering for years (like some people do) what is wrong with me.
I am thankful for the unbridled amount of love and support I’ve received from my family and friends as I try to navigate this disease.
Many people have offered to help in anyway they can but, I don’t really know how to respond to that. I’ve enjoyed being independent and I have a hard time asking for help out right. Really, it’s the simp,e things that I appreciate. Help around the house, a trip to see Reidar, help in the garden, bring us your leftovers. It can be really hard for me to do day to day things sometimes, particularly when my balance and coordination are off. Or, offer to hang out with me I’m always afraid of falling and when I’m home alone that fear doubles.
If I’m having good days let’s do something outside of the house, movies, restaurants, the mall, whatever. Or, do something for Parker, his life has changed too.
Or, support the National MS Foundation. Donate, or write letters to representatives supporting research for MS and other neurological disorders. Sign up for a fundraising event or donate to a Walk MS event. Let’s get an actual CURE not just drugs that cost tens of thousands of dollars per year (I’m not even exaggerating here). Treatments are fine, but let’s be honest, what 30 year old looks forward to a lifetime of thrice weekly shots?
Or, just send me a note! I’ll reply, maybe not immediately but as my energy allows. I was amazed and grateful at how many people sent cards and well wishes shortly after my diagnosis. I always knew I had a great support system but the physical evidence of it really does help.
Please, don’t tell me about “cures” or diets or voodoo spells you found on the Internet. I won’t be receptive to this type of help no matter how well intentioned you may be.
If you have questions I’m happy to answer them. MS affects everyone differently and I’m happy to share my personal experiences.
I wrote this in honor of World MS Day 2015 which happens to be exactly 6 months after I heard those words, “I’m afraid you have MS”.