Symptom Sunday #4

Just around the corner is the season most MSers dread. The very sound of the word can make us cower in fear of what will be. The season I am referring to is…SUMMER!!!!

**insert horror movie scream, Vincent Price laugh and menacing music here**

Now some of you reading this now may be horrified at the sound of this. What could be so wrong with summer?! The beach! The ocean! The pool! The BBQs! Yes, all of that is fantastic and much fun is had. I myself am excited about all of the above.

Imagine this if you will. You are enjoying a nice summer day in the sun having a backyard BBQ with friends. You feel a little warm, as to be expected, so you cool off with a cold drink or a dip in the pool. It helps, but not for long. Then you start not being able to see straight. Your hands go numb. You need to get into the house now. The feeling of the a/c calms you and you sit down. The fatigue hits you that you have to lay down and close your eyes for a bit. All this is happening to you while everyone else can be outside enjoying the fun in the sun with no problem. Fan-damn-tastic.

A little theatrical? Maybe. Exaggerating? Eh, not really. You see what I just described was an example of the heat causing a MS episode. This article is the best one that I have found that describes heat vs MS.

Yes there are things that can be done to remedy it so someone isn’t a hermit for 3 months. It’s nothing new with any MSer. Sometimes we have to make plans around the disease itself. In this case, we learn to plan around the heat. Does it mean we cut our time at the beach shorter than we would have liked? Maybe. But there’s always tomorrow for more fun. In my opinion, it’s better to not invite an “episode” in. (Those damn things have a mind of its own as it is.)

Now excuse me while I go refill my ice cube trays…

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Mommy vs CrazyKid

I will start this off with something off topic but important to mention. Happy Birthday, Mom!!! You taught me how to be a good mom by experiencing a great one!!! I only hope to get to be on your level. Love you more than you know!!!

I have been saying ever since CrazyKid turned 6 that she has been, well, crazy. She went from being a calm, sweet girl with hardly any major fights or tantrums in general to a non-stop-if-she-does-not-get-her-way-she-is-going-to-scream-at-me-stomp-down-the-hall-and-slam-the-door-to-her-room-making-me-want-to-bash-my-head-into-a-cement-wall kind of girl (good times). I know that my mother is reading this with a huge smile because she is getting her wish. Correction. What she wished for was for me to have 10 children exactly like me. What I (truly believe) was given, was 10 of “me” wrapped into one little girl.

Awesome…cannot wait for ages 12-17…

With that said, CrazyKid has done a slight turnaround this past week. I do not know if it is the result of all of the doctors visits that she knows I have been going to or what. There has been less fighting during the day. She has been letting me do her hair without a fight (“No braid! You’re taking too long!”) and I have only has to remind her 3 times instead of 3,000 to eat her lunch before the bus comes. It is a beautiful thing!

As I write this a new thought came to mind. Maybe it is not so much her changing as it is myself changing. I am (slowly) learning how to better control my anxiety, which is probably the reason why we have not been butting heads so much. I know part of her tantrum throwing is because I give her an audience, and a loud one at that. (Two Polish females yelling? Isn’t that just conversation?) I have learned the art of walking away *gasp*. I now pick my battles with her and do not go right to bashing-my-head-into-a-cement-wall at the first sign of misbehaving from her. Does that mean I let her get away with murder now? Hell no! Is she a perfect angel? Not a chance, but neither am I. I am just starting to handle things differently and in turn it seems she may be too. TEAMWORK!!!

Next stop…the dog.

Symptom Sunday #3

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Boy has this been a MS related week. Between my monthly Tysabri infusion (which I still have a lingering bruise from) and a routine Neurologist visit, I have had my fill of MS talk. Still, here I blog. The subject of today’s Symptom Sunday is:

Emotional Changes

This is a subject that everyone loves talking about and no one ever gets embarrassed about (sarcasm). Unfortunately this is something that most MSers go through. From my own experience, my anxiety has skyrocketed ever since diagnosis. I will go days, sometimes weeks, feeling ok. All of a sudden, BAM!!! Anything and everything will make me want to bash my head into a cement wall. Then when I start feeling like this then I know it’s MS related and get super frustrated about the fact that I’m sick and then every following thought is something negative and if those thoughts turn into words they turn into future embarrassment to whoever was in my path of destruction. Awesome.

One thing I have to try and keep my focus on is obviously the fact that I am a mom and that CrazyKid relies on me for the standard “Mom duties”. If there are days that I am feeling exceptionally bad, I will try and be honest and ask for assistance from my always supportive family/back-up team. Actually that’s kind of a lie. They just know by the look on my face if I am holding back Volcano Melissa. Lately the majority of my as-needed assistance comes from my recently retired dad. CrazyKid loves hanging out with her Pop and Pop loves hanging out with CrazyKid.

Yes there is medication, but you also have to help yourself though it. Distractions help me a ton. I have always been an avid reader (anyone that wants to send me an amazon.com gift card will be a forever friend), I love to write, I exercise when I can, and having music on definitely calms me down.

Especially when I play the music though my AppleTV and big pictures of Keith Urban or Tim McGraw are on my screen…yup…that makes me calm.❤

A Few Days of Traveling & Mother’s Day

What a crazy week it has been, mentally and physically. Last Tuesday-Thursday, we left CrazyGirl and the dog with my parents and my husband took me on a semi-impromptu trip to the Baltimore Inner Harbor. I swear, I love it there. It was nice to just do “nothing”. We were able to dodge the on-and-off rain so we could eat most of our meals outside by the water, went to a Orioles vs Royals game, went to the National Aquarium (he wouldn’t let me take home a puffin), and walked by the water and through Federal Hill. The walking around did get to me at times, so we would have to stop so I could sit or lean for a while. That is one MS symptom I don’t think I will ever be able to get over being frustrated about. We did have a great time with some long overdue “just us” time.

After the calm time away was the foolish night away. My husband and I went with my brother and sister-in-law to Philly for her “Forever 29″th birthday. Three different bars, many beers consumed and the usual obnoxiousness that the four of us seem to get into. (Just ask our cab drivers.) Between Baltimore & Philly, I think I have finally come to terms with the fact that I cannot hold my alcohol like I used to. Eh, who am I kidding? I can’t even blame MS on this one. I was never really that good at holding my alcohol in the first place. I have a knack for being a “bad example”.😉

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Finally back home, days worth of a hangover gone bye-bye, and now it’s Mother’s Day. No traveling, but still a great day spent with my family. Cuddles with and love from CrazyGirl, my niece came over for some cuddle time and then my husband, CrazyGirl and I went out to a late-lunch-early-dinner with my parents to Water Street Bar & Grille. It was a beautiful day to eat outside with a beautiful view. A nice calm day to end the hecticness of the past few days.

I hope everyone was able to honor a mother this past Sunday. If it wasn’t for a mother, none of us would be here, because let’s be realistic. Men would never be able to go through pregnancy and childbirth.😉

Symptom Sunday #2

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Today’s regularly scheduled program of Symptom Sunday will be preempted due to today’s celebration of mothers everywhere. Tune in tomorrow as we get back down to business.

For today, hug a mother. Well, preferably one that you know. Don’t just walk up to some random person with your arms open. I don’t want to feel responsible for an arrest. I mean, I won’t…just don’t do it.😉

Happy Mother’s Day!!!❤

Dr/patient relationship. How important is it to you?

Recently a friend of mine asked who my neurologist was. I am positive he was only looking for a name and possibly the phone number if I had it handy. Little did he know he would be opening up a whole can of worms complete with matching blog post.

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My…
Neurologist…
Is…
A-may-zin-ga!!!

Am I partial? Sure, so allow me to give a few examples. I was a bundle of nerves in the beginning of this whole ordeal. Understandably so. Dr. “M” has always been brutally honest without being an asshole about it, which is greatly appreciated. He always starts off my appointments with not just small talk, but he really remembers other things going on in my life not MS related. That might sound trivial to some people, but it really means something to me. It shows that I am not just another faceless patient with lesions on her pretty brain.

He has NEVER given me any reason to question him or any of his actions for my case. I have needed to change and/or adjust medications from time to time (as most MSers do) and he always is able to explain exactly what is going on and in a language that I will understand. He has never given me shit for any time when he needs to spell it out for me and draw me a picture with crayon. A few times he has called me at home after I had experienced a major episode just to check on me. Yes, after office hours. No he did not have a receptionist call. No, he did not bill me or my insurance. He legitimately cares about his patients and I am very thankful for that. I have recommended him highly to anyone who has come to me inquiring about my neurologist. (You’re welcome for the business Dr. M!)

I have always felt that a good doctor/patient relationship is super important. It doesn’t matter if it is a general doctor or a specialist, you need to trust the person who you believe is looking out for your best interests in regards to your health. If you don’t, get a second opinion.

Luckily, I haven’t had to…and don’t plan on changing that any time in the future.

Symptom Sunday #1

New series alert! Each Sunday, right here on MMMS, will be known as Symptom Sunday, I will be focusing on, you guessed it, symptoms of MS. Either ones that have been effecting me that week, or symptoms in general. The subjects of this week will be: Fatigue and Memory (lack thereof).

Fatigue

This is a big symptom that affects me almost daily. No matter how much sleep I get at night, I have a very hard time with the get-up-and-go in the morning. This has absolutely led to my coffee addiction. I swear that stuff is magic in a cup…or two…or five. Even with the usual everyday needs of Whatsherface and Pup, some (most) mornings I feel like I’m working on autopilot. I know you’re seen on commercials for mattresses, the quintessential happy kid jumping on their parent in the morning, the sun gleaming in through the French doors to the balcony and everyone laughs. Lies I tell you! The way my brain works, it usually takes me a minute to focus, go through where-am-I-and-who-is-this-kid-shaking-the-living-hell-out-of-me? Oh yeah, she’s mine! Wait, isn’t she supposed to be grounded from playing on the iPad that’s in her hands? Faaaaaaaaaantastic.

After breakfast, making sure everything is ready for school, getting her changed, letting Pup out, the usual fight of hair being done, grabbing something for lunch, the bus arrives and Whatsherface off to school. I may be seeing things, but I could swear that bus dives down the street with an angelic glow around it. The mornings take more out of me then I think people realize. There are some down with I get back into the house after the bus stop, and I plop down on the couch for a second, let out an “Ahhhhhhh…” and close my eyes just for a second because this is my cleaning and errand running time. But let’s be honest people…there are some days that the fatigue affects me so much  that I don’t do a thing while she at school. This basically means that after about 4 hours in the morning, I am ready to fall down. I don’t recommend it all the time, but try it one. It’s semi liberating…until you realize you have done jack shit all day.

Memory (or lack thereof)

There have been three times this week where I have said the phrase, “It’s all coming back to me now”.  I swear my memory has been shot hell. That’s why my calendar is my bff. If it’s not there, it’s not happening. It is just so unbelievably annoying because it’s never just forgetting little things. It’s always things like doctor appointments and I remember 10 minutes before the appointment and the doctor is 30 minutes away. Or the thing that I have told literally a million times

Needless to say, I have a wall calendar, my phone and strategically placed Post-It’s around the house.

 

Good Times!