Flossing

So the other day I went to the dentist.  I love my dentist and her office.  Everyone who works there has a heart of gold.  They are awesome people. I had x-rays taken and it looks like two of my teeth aren’t in the best shape.  Dentist tells me that I really need to focus on flossing and that if I floss more back there, I could probably prevent a cavity or two from forming.  She knows I’m pretty anal-retentive about my teeth, so it’s what I needed to hear to get me flossing again.

I’ve been religious about flossing since then.  In fact, I got up in the middle of the night the other day to floss because I had forgotten to do it when I brushed my teeth before coming to bed.  I don’t want any cavities in THIS mouth thank-you-very-much.

I really need her to say, “Michelle – you need to lose weight.  If you lost weight, you won’t form any cavities.”

Think it might work?

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Posted in Devic's Disease, Neuromyelitis Optica, Rambling posts, Uncategorized | 1 Comment

Limiting myself

I know it’s been a while.  For that, I’m sorry.  The thing is, I’ve been feeling really well and because of that, I’ve been able to get things done around here.

We painted the inside of the house.  Well, WE didn’t paint it – we hired someone to do it for us and it looks nice.  I learned one thing though – NEVER trust myself to choose paint colors.  With one eye, I am finding that I can’t match things very well and although the paint job they did was terrific, my color choices weren’t.  That’s okay – with three kids and  a dog in the house I’m sure we’ll be painting again.

I made a stocking for my son for Christmas, so that took a bunch of time.  I’d take a picture of it and post it for you to see, but unfortunately it’s already out in the attic of the garage.  I’ll have to do that when we decorate for Christmas 2012.

I survived Christmas and all of its natural stressors without any relapse.  In fact, I think it was the nicest Christmas we’ve had!   I got plenty of rest and didn’t sweat the small stuff at all.  I’m quite proud of myself!

I’m feeling really well.  REALLY well.  Yes, I still have those super exhaustion days, but my good days are really good and for that I’m thankful.  I’ve taken the dog for walks.  I’m cooking dinner again.  I’m enjoying life.  I’m happy.

But today was a slap in the face for me.  I love to volunteer, and if you’ve read other posts in my blog, you’ll know that I was recommended (and followed through) to stop volunteering and just concentrate on my health.  I did that.  I quit everything – Home and School president, Marketing committee, Catholic Identity committee, Destination Imagination, Strategic Planning committee, playground duty, library aide – (that’s all I can think of – I’m sure there is more).  I quit it all.

But since I’ve been feeling better, I thought it wouldn’t hurt to start volunteering at school again.  I love being with the kids and I love to help, so a couple hours of my time wouldn’t hurt me, would it?  Surely it wouldn’t.

I was wrong.

Today was the Scholastic Book Fair at our school.  This is my FAVORITE thing to volunteer for – who doesn’t LOVE to be around books all day?  Being an English/History major in college gave me a sick love of books,  so working a book fair that is held in a school library AND add school kids to the picture – well that’s pure heaven to me.

I volunteered today from 10:00am until 12:00pm.  I ran the register with the exception of getting a camera from the office for the principal.  The rest of the time I was sitting down and helping kids with their purchases.  I straightened a few books, but that work was minimal.

About 1/2 hour after leaving the school I started to get major pins and needles.  Major.  When I get pins and needles like this, I consider it a warning sign that I’ve done too much.  The pins and needles happen from just under my chest down to my mid thigh (on both sides of the body) and the feeling is similar to a hand or foot falling asleep.  It’s not painful, but it is bothersome.  Normally when I get this symptom, I immediately lay down to rest.  I get this feeling when I’ve physically worked too hard on something – for instance – if I go for a very long walk, or if I walk on a treadmill (I don’t know why the treadmill bothers me, but it does), or if I do some jumping jacks.  Anything that jars the lesion on my spinal cord will cause me to get the pins and needles feeling.

Why sitting at a book fair did this, I don’t know.  What I do know is that it ticked me off to no end.  I thought I was doing great and those stupid pins and needles remind me of how sick I really am.

But on a lighter note, I really am thankful I volunteered today.  It was so good to be in the school again.  It was so good to see the kids again.  It was so good to see friends of mine that I haven’t seen in a while.  It was so good to be needed or at least feel that way.  Unfortunately, it was not good to know that despite all of the rest I’ve gotten over the last six months AND the fact that I feel 100% better than I did last year, I still have to limit myself in all that I do.

I used to think the sky was the limit.  Now I’m realizing that isn’t so….not if you have NMO.

Posted in Devic's Disease, Multiple Sclerosis, Neuromyelitis Optica, NMO, Uncategorized | 2 Comments

Frustrated

This morning I woke up exhausted.  Even though I had plenty of sleep, I woke up just beat.  It’s Sunday morning though, and I will not miss church.  So, I got up, got myself and the kids ready and we headed on off to church.

On the way there, I thought about turning around and going home, but no – I am NOT missing church, so I found a place to park and took the kids in to find a place to sit.

Because I’m on immune suppressants, I try my best to sit up near the front of the church.  I do this for two reasons – 1. I’m not surrounded by people and 2.  I want to receive from the cup – the less people who receive from the cup in front of me, the better.

The kids and I found a place to sit and then BAM – exhaustion hit.  I can’t even really call it exhaustion – it’s more of an extreme weakness.  My arms go limp, my legs go limp and then I even feel it in my lips, my tongue, my jaw.  It’s a feeling that’s so hard to describe, but it’s pure exhaustion and weakness.

So, instead of listening to Fr. Sylvestre’s homily, instead I am pep-talking myself into making it “just one hour.”  At the end of his homily, I decided it was time to go home.  I ushered the kids out of church and needed my daughter’s assistance to get to the car.  God love that girl – she gave me a big hug, told me she loved me and helped me to the car.

Of course, people I knew were sitting all around us and I’m embarrassed. I don’t want people worrying about me.  I don’t want any attention over this stupid disease.  I don’t want my daughter to have to support me because I’m too weak to make it to the car myself.  It’s not fair to my kids to have a parent they can’t rely upon.

I truly hate NMO right now.  My dog needs to be walked (he’s hyper as can be) and I’m too exhausted to take him out now.  Poor dog.

It’s a beautiful September day where I should be out and about with my kids celebrating life, celebrating this beautiful country of ours, celebrating those people who lost their lives this day 10 years ago.  Instead, I am going to take a nap – not because I want to, but because my body can’t physically stay awake, because my body is so weak I can barely keep my head up, because my hands and feet are so swollen because of who knows why and because I have this crappy disease that has no cure but attacks with a vengeance.

I really hate NMO.

Posted in Devic's Disease, I'm a big dork, Multiple Sclerosis, Neuromyelitis Optica, NMO | 3 Comments

Symptom Update

Pain:  In torso from breastbone to hips – sunburn feeling.  Firm pressure brings it some comfort.  Brushing of my shirt against my skin hurts.  On a scale from 1-10 (10 being severe pain), I think I’m at about a 5 (up from a 3-4 last month).  Pain is on the right side of my abdomen.

Nausea:  none – YAY!

Tiredness:  Scale from 1-10 where 1 is hyper and 10 is exhaustion.  I’m at around a 6 on most days.  This is down from last month.

Emotional:  I’m struggling with guilt.  I have given up everything that I used to volunteer for and I’m kind of feeling lost right now with it.  I feel very well right now, but after talking with other NMO patients and my husband we thought it would be wise for me to take a year off from my commitments so I can concentrate on my health.  Well, it’s HARD and I’m having a hard time right now because of that.

Physical:  I’m feeling stronger but still have a way to go.  Some numbness and tingling when I have any type of jumping or impact exercise.  I think I’m feeling pretty good, though I’m still pretty tired.  When I’m tired I slur my speech and walk with a limp.  I also have a hard time with transitions (sitting to standing, etc), so church can sometimes be difficult.  This hasn’t changed since the last time I posted a symptom update.  I have been going to the gym consistently, and although I haven’t  lost any weight, I do feel much stronger and healthier.

Mentally:  I think I’m doing well, but the memory retention isn’t the best.  I get distracted easily.  Once I get the house in order, I hope to start teaching myself Spanish for fun.  🙂

Other:  I’m still hungry all of the time, but I should start weaning off of the prednisone by the end of the month.  I’m really looking forward to that!

So that’s it for now – I’ll have another update next month! 🙂

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Before and After my NMO Diagnosis…

1.  Before my NMO diagnosis:  Major panic attacks at least twice a month.  Sometimes these panic attacks were so uncontrollable that I would be forced to cancel an appointment (often on the way there or even in the parking lot) due to me vomiting from the attack.

After my NMO diagnosis:  I’ve had two panic attacks total.  I don’t know if it’s because I finally know what’s wrong with me now and I can relax or if it’s the meds I’m on, but it’s so nice to not constantly be worried about the possibility of a panic attack.

2.  Before my NMO Diagnosis:

My dream was to go back to school and get my Masters in Education.  I love being around kids – especially middle schoolers and teenagers and I would LOVE to be teaching history and English part time.

After my NMO Diagnosis:  I’m afraid to start anything now.  I’m afraid to give myself any extra stress that may throw myself into a relapse.  This saddens me immensely.

3.  Before my NMO Diagnosis:  I’m always putting things off.  Vacations, savings, decisions….  I can’t do that anymore.

After my NMO diagnosis:  I am planning a trip to Disney World with my husband and kids.  I’m even thinking of taking the family to Rome to celebrate midnight Mass on Christmas Eve.

4.  Before my NMO diagnosis:  I am the queen of volunteering.  Home and School (PTA) President, Destination Imagination Team Manager,  Book Bowl coach, Quiz Bowl coach, member of the school steering committee, marketing committee, Catholic Identity committee, Faith Formation committee, school librarian and pretty much “if you need it done, ask Michelle…”

After my NMO diagnosis:   I’ve been recommended to quit everything for a year to avoid stress and allow my body to heal.  It breaks my heart.  I hate to be idle and I hate to not be involved in the things that are important to me.  This is so HARD for me.  In fact, when I resigned my last position I was ready to bawl.  It was very hard to do, but thankfully all involved were very understanding.

5.  Before my NMO diagnosis:  Go go go all day long.  Run this errand, volunteer for this committee, run the kids here and there…

After my NMO diagnosis:  Work out in the morning – I go to the gym at least 3-4 times a week. Take the dog for a walk.  Take a nap.  If I have energy, TRY to cook dinner.

7.  Before my NMO diagnosis:  no dog.

After my NMO diagnosis:  DOG – what can I say?  I wanted a dog!

8.  Before my NMO diagnosis:  I “thought” I was overweight.

After my NMO diagnosis:  30 pounds later….  thanks prednisone.

9.  Before my NMO diagnosis:  I took my husband and kids for granted.

After my NMO diagnosis:  My husband is my savior.  He knows when I am weak and takes over without complaint.  He never complains about the house being messy, or me not having the energy to take a shower or to cook dinner.  NEVER.  My children help me as well.  I can never take them for granted again.  I am so fortunate to have them in my life.

10.  Before my NMO diagnosis:  I took my health for granted.

After my NMO diagnosis:  I thank God everyday for the blessings I have.  I know I am sick, but I am so thankful for the little blessings that are given to me every day.  Even though I’m sick, I know that I am loved and I can feel that love through the prayers offered up for me every day.  I feel my faith in God has been resucitated and I know that despite all of my fears of the unknown that if I rely on Him, I’ll be okay.

Posted in Devic's Disease, Family, I'm a big dork, Multiple Sclerosis, Neuromyelitis Optica, NMO, Uncategorized | 5 Comments

God You Look Awful….

I may look awful, but I’m feeling pretty darn good…

Or, as I should properly say it, “I’m feeling well.”  I can’t help myself…

So I saw someone the other day that I haven’t seen in a while.  She’s the kindest soul ever and I know she meant nothing by what she said, but she was shocked when she saw me and just blurted out – “God, you look awful!”  You see, I’ve gained a ton of weight in the last few months, and I was no slim sally to begin with, so the weight gain is pretty severe and mostly in my face. (Okay, it’s not mostly in my face.  A ton of it is in my butt too, but for this post, we are going to talk about my face).  I have what sickies like me call “moon face” in which  steroids taken makes one’s face round like the moon.

When I first heard the term, I thought it was something a friend of mine who is also sick made up, but then after talking with my sister, we both realized that it is a true medical term.  Hey, it’s even on Wikipedia:

Moon face, or moon facies[1], is a medical sign where the face swells up into a rounded shape. It is often associated with Cushing’s syndrome or steroid treatment (especially corticosteroids), which has led to it being known as Cushingoid facies (“Cushings-like face”) or steroid facies respectively.[citation needed]

So, I have moon face due to the prednisone I’m on and to be honest, it’s embarrassing.  I’ve been told that once I’m off of the steroid, the moon face will start to go away, but geez – I can’t wait that long!  Who wants to look like the moon?

Prednisone makes me VERY hungry.  I am hungry for things I don’t really like and ALL of it is bad for me.  Things I don’t normally eat or buy, I am CRAVING to the point where it’s like a drug and once I have some (or the whole bag), I get some relief.  It’s so hard to describe, but those friends who have been on steroids for prolonged periods of time know exactly what I am talking about.  It’s a hunger that can’t be filled and it’s incredibly frustrating.

I believe I mentioned a few posts ago that I recently graduated from physical therapy.  I’ve moved on to working on my muscles at the gym now.  Thankfully, the gym is a part of the hospital system here in town, so the trainers there are very familiar with the physical therapies that the hospital uses.  The exercises that I’m doing are a little harder than what I was doing at physical therapy and it’s a nice continuation of the work my physical trainers had started.

Unfortunately, with all of this weight gain, I have no clothes to work-out in, so today I headed to the local store to find a couple of cheap shorts and shirts to wear to the gym.  I have found that I no longer fit in regular sizes.  I’m now in the “plus” size.  I’ve NEVER been a plus size – not even when I was pregnant was I a plus size.  Fortunately, the men’s department had some shorts that fit me, so I was able to score some there as there were no plus sized shorts that fit me (thankfully, they were all too big and they didn’t have my size).

Now, pre-sickness, if I gained weight, I would immediately sit down, write up a plan and get to work.  “I’m going to only eat 1200 calories a day, walk/jog three times a week and do that workout video – the one with Janet Jones Gretzky and that horrible 80s music –  three times a week.  Then I’ll weigh in on every Friday and make my sister hold me accountable.”

You know what?  I’d actually do it.  It would last until I lost a little bit of weight and then I’d go into maintain mode because all of my pants would fit again and I’d get lazy.

But this is different.  I’m sick this time and now my focus needs to be not on the weight I need to lose, but the muscles I need to strengthen, the food I need to eat to fuel my body properly and the rest I need to re-energize myself for the next day.  I can’t concentrate on losing weight quickly right now.  I have to concentrate on making myself stronger, not only for myself, but for my husband and my kids.  I’m not going to put myself on a restrictive diet this time.  Why?  Because I need to give myself a break.  I’m sick and the prednisone is temporary.   Once I’m off of it, the weight will come off, but golly – I hate to look in the mirror now and see that Moon Face smiling back at me…

It’s temporary Michelle….it’s temporary….

Posted in Devic's Disease, I'm a big dork, Neuromyelitis Optica, NMO, Uncategorized | 3 Comments

Symptoms Update

I’m going to do this periodically just to keep track of my symptoms for prosperity’s sake.  (Yeah – prosperity’s sake.  :) )

Pain:  In torso from breastbone to hips – sunburn feeling.  Firm pressure brings it some comfort.  Brushing of my shirt against my skin hurts.  On a scale from 1-10 (10 being severe pain), I think I’m at about a 3-4 (down from a 4-5 in May).

Nausea:  none – YAY!

Tiredness:  Scale from 1-10 where 1 is hyper and 10 is exhaustion.  I’m at around a 7 on most days.  I think this is GREAT because I used to be a 9.

Emotional:  Fine

Physical:  I’m feeling stronger but still have a way to go.  Some numbness and tingling when I have any type of jumping or impact exercise.  I think I’m feeling pretty good, though I’m still pretty tired.  When I’m tired I slur my speech and walk with a limp.  I also have a hard time with transitions (sitting to standing, etc), so church can sometimes be difficult.

Mentally:  I’m still worn out, but starting to retain information again.  I’m doing several memory games online and keeping up with my friends, so all is getting better.

Other:  woke up with the sniffles this morning, but it cleared up by the afternoon.  Must be allergies or something like that.  I’m always STARVING and I hate every minute of that.  Thanks prednisone.

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