MS Annoyances - Keeping You Informed

So, one of the most frustrating things about MS is not knowing if things you are experiencing are related to the MS or not. This disease affects so many things (and probably has for years - I just didn't know it was the MS). Hubby thinks the frequency of my trips to the bathroom are directly related to the amount of liquid I consume. The truth is, he's probably correct.  However, the sudden urgency that is experienced right before one of those trips becomes necessary is on the level of an 80 year old with bladder control problems. That is the MS.

The most recent battle/annoyance? Headaches. Like, let me stay in bed, turn off all the lights and take so much ibuprofen and naprosyn that my liver screams at me for the damage it is suffering in the process. After about a month and realizing that is how the last episode began, I decided to call my neurologist. Apparently, the weather not being able to pick a season has been causing annoyances for lots of MS patients. (Sometimes it's just nice to know you aren't a lone crazy person in the boat.)

I am now taking an oral steroid taper (which is more pleasant than the IV steroids - which make me behave as though I'm bi-polar AND on crack). It is helping with the headaches - I'm actually getting out of bed and turning on lights. It makes me anxious, hot, and not be able to get a full night's sleep. (I'll take little sleep over migraine, though.) However, I wouldn't complain about a full night's sleep (or a massage, for that matter).

16 Going on 17

Ok, so it was more like 33 going on 34, but who is counting? (Besides Crys!)

I had a GREAT birthday! Hubby and I actually celebrated last Saturday. We went to eat at MELT in Cleveland! Yum! We ran a few errands, shopped and ended up going for ice cream at Mary Coyle's. It's an honest to goodness old-school ice cream parlor. Loved it!

I got breakfast on the morning of my birthday (hubby made omelets and toast) and he made homemade pizza for dinner. Holla!  I ate a free lunch at First Watch and I bought myself a new skirt and top. I had a very unexpected visit from a special friend of mine who stayed for dinner.

About a bazillion people called, text me, or messaged me on Facebook. I felt very loved and blessed.

As I reflected on the past year, I realized a lot has changed. I lost my job in Cairo. I got married. I moved to Ohio. I've watched my mom fight cancer. I was diagnosed with MS. (I've done a ton of craft projects.) I have laughed and cried - sometimes within 5 minutes of each other. It has been an 'emotional roller coaster' sort of year. I have made new friends and mourned the fact that I can't see old friends as often as I would like to. In the end, 33 was a HUGE year in my life and I'm sad about some things coming to an end, but excited about all of the new things. 33 was bittersweet. I'm sure 34 has a lot in store and I've decided that I just want it to be a year where I ultimately spend time investing in people and in what God has for me. Here's to another year!

MS Education: Symptoms

Let's talk about MS. I told you what it technically is here. There are a ton of symptoms that people with MS can experience. MS is a very individualized disease. While some symptoms are very common, every person experiences the symptoms differently.

Common Symptoms include:

• Fatigue
• Numbness
• Walking (Gait), Balance, and Coordination Problems
• Bladder Dysfunction
• Bowel Dysfunction
• Vision Problems
• Dizziness and Vertigo
• Sexual Dysfunction
• Pain
• Cognitive Dysfunction
• Emotional Changes
• Depression
• Spasticity

My Symptoms:

• ~Fatigue - This is very common. About 80% of people with MS deal with fatigue.
• ~Walking - THIS IS NOT ONE OF MY SYMPTOMS. I SIMPLY TRIP OVER MY OWN 2 FEET ALL BY MYSELF!
• ~Numbness - This is how mine started. It is frequently one of the first symptoms experienced by those who eventually are diagnosed with MS. It gets better, although I still have some numbness in my left hand from the last attack. I assume it will eventually go away, but I don't know for sure.
• ~Bladder Dysfunction - It's nice to know that there is a medical reason that I always have to pee, but there are times when I have to pee NOW. That's sucks. I'm like an old woman! :-)
• ~Vertigo - I didn't think about it at the time, but I had a serious bout with Vertigo in June of 2009. I didn't know that was a common symptom of MS. And I am not sure that I would've put 2 and 2 together even if I would've.
• ~Cognitive Dysfunction - I HAVE MEMORY AND PAYING ATTENTION ISSUES, BUT I AM NOT SURE I CAN BLAME IT ON MS, BUT I MAY START TRYING!
• ~Depression - I have been on Celexa for a couple of years because of depression. Little did I know that it was related to the MS (because I didn't know I had MS)

Less common symptom:

• ~Headaches - In the spring/summer, I dealt with constant headaches. And I still get migraines. Last Monday was the most recent. I never could figure out a trigger. I kept journals and everything. I haven't talked to my doctor about this because I just read it on the National MS Society's website, but it's nice to know I am not crazy and that studies indicate that vascular headaches/migraines and MS are related in some patients.

Other annoying things:

• ~Over-Heating - It takes FOREVER for my body to regulate it's own temperature once I get hot. It is suggested that people with MS stay out of hot tubs, take warm showers (not super hot), and don't stay out in the sun and summer heat for extended periods of time. This is comforting to me because I HATE heat, but super annoying because I like hot tubs (but it causes me to be all tingly), I don't like to have to cool down when I get out of the shower because it takes FOREVER to get ready OR I spend the entire time sweating while I'm trying to dry my hair and do my make-up (counter productive, people). And it's super annoying because my family and Ronnie's family likes to be outside during the summer. I typically end up staying inside Boo!

It's nice to have "reasons" for some of the things I experience. It doesn't make it better or less frustrating or less annoying, but it DOES make me feel better somehow to know that there is a reason. 

I began my MS medication regimen 3 weeks ago. I took my 3rd dose of Avonex last night. Giving yourself a shot is...different. You know it's coming. And it's even different than watching someone give you a shot and it's most certainly different that giving someone ELSE the shot (that doesn't hurt you at all!). And tonight I am pretty sure I nicked something I wasn't supposed to because I bled like a stuck hog and the medicine did NOT feel good going in. Oops!

Symptoms I have experienced? Feverish, chills, aches, and needing sleep. The good news is that it only lasts about 12 hours from what I can tell. Last week I took the meds before bedtime. I think I like that better. So, I plan to take the meds on Wednesday nights because I typically have no where to be on Thursday, so I can sleep it off.

So, that's my update and a little education all wrapped up in one. I think of the MS every morning after my shower and I think of it when I take my medicine, but other than that, it's not at the forefront of my mind. I think that in itself is a blessing. Chronic illness may change your life, but it shouldn't rule your life.

"Why?" or "What Now?"

I told you in my last post that there was a reason that I need to move my rear. While I would like to lose weight, that is NOT the reason. Let's be honest - I really loathe formal exercise and I think the people who say it makes them feel better are full of it. There is nothing about sweating profusely that makes me feel good (not while said sweating is taking place, nor later). Big burst of energy? It's garbage!

Exactly one month after our wedding, I was diagnosed with Multiple Sclerosis (MS). MS is thought to be an autoimmune disease. It affects the Central Nervous System (CNS). MS is unpredictable. It can produce many different symptoms and the disease's progress, severity, and symptoms vary from person to person. Basically, the body's immune system attacks and damages myelin on the nerves. No one knows what causes it and there are no cures. When an attack/episode occurs, lesions develop somewhere in the CNS. The location and severity of the lesions determines the symptoms.

Back in 2005 I had an attack, but at the time they wouldn't clinically diagnose you until a 2nd episode/attack. I was led to believe that I may never have a 2nd episode because it may have just been a one time thing that mimicked MS. They called it a Clinically Isolated Episode. The good news is that I went 6 years (without medication) without having a 2nd attack. In the world of MS, this is good.

However, I have been told to "move". I should exercise because it will help with the fatigue that MS causes (who knew there was a reason I was tired all the frickin' time?!) and because it will keep my body from becoming stiff and not being able to move. So, ZUMBA it is! At least it's kinda fun (I'm trying to convince myself here. The last time I went and lady quit 40 minutes in! Packed up and L.E.F.T. The truth is, I thought I might die!).

There are 4 courses of MS. I currently have remitting/relapsing MS. It is the least severe form. Basically this means that I will have down time between attacks. It was 6 years this time. I will be starting a medication regimen this month and that is supposed to keep things at bay. I have chosen the medication Avonex to try.

I will be posting more on this disease, as well as my struggles, frustrations, and accomplishments. Chronic illnesses are often overlooked and it is my hope that someone will stumble upon these posts and find the encouragement that they need to just keep going...to keep living - REALLY LIVING!

Instead of asking God "'Why?" I am choosing to ask "What now?". I figure God has a purpose in all of this and I just need to figure out what it is.