Symptom Check – Update

I know, I know – I said I’d post about my trip, but I’m going to do a symptom update instead:

Pain: No pain other than pain I have from a bulging disc in my neck.  It radiates to my shoulders.  I still have the sunburn feeling in my torso,  but I’m so used to that I barely notice it.  Compare that to all of the pain I had before.  This is awesome.

Nausea: My Imuran is making me nauseous at night.  I haven’t had this happen in the 4+ years I’ve been taking it, so I’m keeping an eye on it.  Last night my heartburn was so bad I couldn’t sleep.

Tiredness: Scale from 1-10 where 1 is hyper and 10 is exhaustion. I’m at around an 8 most days.  I sleep all day long.  In fact, today I got up at 7am, made the kids lunches, then after they left I slept until 3pm.  I didn’t get my run into today – today’s a scheduled run and I skipped it.

Emotional: I’m still struggling with guilt. I’m missing out on so much with my kids.  I’m thankful that they are in school during the day so I can rest, but the house is an absolute disaster.  Oh my word, it’s not just messy, it’s DIRTY.  I’m too embarrassed to ask for outside help and the kids aren’t helping at all.  They are so busy and when they’re home, they don’t see the need.  I have my oldest’s graduation this year, and the party will be here at the house.  I wouldn’t even let my own sister in the house in the condition this house is in right now.  I need energy so I can get something done.

Physical: This waxes and wanes.  I’ve been walking and attempting to run, but my times are still so slow.  I’ve done 23 races now, and have literally seen no improvement.  It’s frustrating.  I can’t get consistent though – how can you be consistent when you’re exhausted all of the time?  My toes and legs go numb when I run.  This is nothing new.

Mental: I have a great attitude about things and I know that helps.  But like I said in my last symptom update a few years ago, my mind is forgetting things.  I don’t think it’s any more than I posted last time, so that’s a good thing, but it’s still so frustrating to be forgetting things that are so obvious!!

Like this….

About a month ago I got my hair done.  I get it done about 30 minutes away from here, and near my stylist is a Jimmy Johns.  I really like Jimmy Johns, so I bought myself a sub from there.

On the way home, a 30 minute drive mind you, I was hungry, so I stopped at Subway and ordered myself a sub – totally forgetting that I had one sitting next to me the entire time!!

I do stuff like that.  Stupid stuff.  I’m worried that one day, my stupid stuff will turn into dangerous stuff.  Oh God, please don’t let that happen.

Talk with you soon,
M.

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It’s MRI Time…

I’ve been symptom free for a while now with the exception of complete blindness in my right eye and some numbness in the legs.  I also have permanent exhaustion, but I don’t consider any of these truly “bad” symptoms in that I’m still able to enjoy life.  I sleep through most of it, but I enjoy it.

In December of 2014 I saw my neurologist and he decided that we should do a complete MRI on my brain and spinal cord since it’s been about 3 years since I’ve had one.  So in January, I finally got the nerve up to get one done.

Gosh, I hate those things.  Seriously, I hate them.  I’m so claustrophobic that I’m worried I’ll have panic attacks in there, so I put them off.  In fact, I’ve been known to cancel appointments because I’m so afraid to go. I am a true sufferer of panic attacks.  I wouldn’t wish one on my worst enemy, and putting myself into a situation that causes panic attacks for the “normal” person, is just not my thing to do, but it had to be done, and I did it.

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he first thing to do when I have an MRI (other than pee 1,000,000 times before I get on the table) is to go over paperwork to make sure I’m who I say I am.  I get to wear a beautiful gown and some awesome comfy pants (seriously, I wish I had a pair of my own).

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Next I hop on the machine.  The foam pillow she has there goes under my knees and the blanket just came out of the warmer – my favorite part of being in the hospital is those warm blankets they let us use.  They are so warm and soft.  I love those things!
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Our MRI machine allows me to listen to music.  I can bring my own, but I prefer to let the technician put his playlist in  – he’s got great taste in music.  ❤  I enjoyed listening to Rush – one of my favorite bands while I was in high school and college.  It helped me keep my mind off of things while I was in there.  I was told the test should run about 3 hours, but they got me out in about 2:15 minutes including me changing my clothes.
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Next they put a mask over my face.  It doesn’t touch my face,  nor does it block my vision, but I prefer to not look inside the machine (it’s very tight in there) so I ask them to put a washcloth on my eyes just in case I open them up and start to panic.  While it’s light in there, I still don’t like enclosed spaces.  From what I understand, the cage is used to help reduce stimulation and movement.  It doesn’t really keep my head still though.  During long exams like this one, my head tends to really hurt, so I take Ibuprofen and Xanax before I get into that machine.

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Next I am lifted and slid into the machine.  It looks like I’m hovering there, but I’m not.  I’m laying down trying to be comfortable.  See those lights above the machine?  Those are cherry blossoms.  They are lovely.  I’m sure if I ever have an MRI on my feet or legs, I’d be able to appreciate them, but for now, the inside of the machine is all I’ll see.

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There’s my brain – see?  I do have a brain!  No lesions.
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Half way through the MRI, I am brought out for contrast.  Here I am given a shot in the vein and slid back in for more pictures.  The contrast can make you hot and sweaty, but I noticed nothing other than a slight burn as it went through my veins.  No big deal.

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ow, I was scheduled to have an MRI on my spine too, so they allowed me to take a small break between scans so I could pee (I have a bladder the size of a pea).  Here they are making me comfortable so I can go back in for round two.

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A marker (kind of like a metal sticker) is put on my back right about where my old lesion was.  This will help the doctor who reads my scans compare the current scan with my old scans.

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They slide me back in the machine.  By this time, I am completely calm (I’ve been there over an hour) and kind of enjoying the ride.  If you’ve never had an MRI, it can be quite a scary thing. The machine makes a lot of noise and rocks frequently.  Sometimes the rocking can be quite jarring.  When I first had MRIs, this rocking would scare me, but now I try to enjoy it.  I try to imagine out driving on a rocky road with my family, or laying on my husband’s boat in the summer.  This time, I threw in being on the Buzz Lightyear ride at Disney World.  It worked.  I had no panic while I was in there.

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It’s time to get out – I’ve survived another MRI.  We snuck around the corner and looked at the scans that were just done.  My husband is a doctor, so thankfully, we were able to do that (not sure if you can do that without a doctor present).  The tech (who is awesome.  I’d name his and his assistant’s names, but I don’t have their permission) showed us the difference between my 2010 scan and my 2015 scan – NO LESION!  Now, that doesn’t mean I don’t have residual symptoms, nor does it mean I’m NMO free.  It just means I don’t currently have any lesions in my brain, nor on my spinal cord.  I’m thrilled as punch!

So that’s a little about having an MRI.  Do I like them? No.  Do they scare me?  At first – yes, but when I get used to being in there, I’m fine.  Would I like to do one every day?  No, but I’m thankful for the great doctors, both local and at Mayo, and our wonderful hospital that have taken good care of me.

So long for now!

My next post will be about my awesome trip to Los Angeles – a preview – broken brakes, train derailment, bomb threat, hugs and tears.

Love you,
M.

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My 5k Journey

Yeah, I know I said I’d be back right away, but it’s been a crazy month.  I finally had time to hop on today, so let’s hope I can get my thoughts in order.

In December of 2013, I decided to do a 5k.  I have many friends who are runners and wanted to join in the fun, but more importantly, I decided that I should be doing something with my legs.  I have Neuromyelitis Optica, a disease that affects my central nervous system leaving me blind and with some mild numbness in my legs.  I have many online friends who have NMO that aren’t able to walk without any assistance, and because of them I figured I really should DO something while I can.

So I started “running” in December of 2013.  My first race was the Jingle Bell Jog here in my little town.  It was hard and no, I didn’t run any of it.  If I did, it was certainly less than a minute total.  It was a freezing day and a dear friend of mine joined me.  We had a wonderful time and that’s where my “itch” to run began.

Since then, I’ve done another 21 races and I’ve loved every one of them.  Some were odd (don’t worry, I’ll tell you) and others made me feel less than adequate, but for the most part, I’ve enjoyed every single one.

On New Years Eve 2013, I decided that my goal for 2014 would be to run 12 5ks – one a month.  That quickly changed to 15 in ’15.  I ended up with a total of 17 races for the year.  I’m so proud of myself!!  Let me take you through each race…

Here is a picture of my first race – the Jingle Bell Jog, December 6, 2013.  I’m with my dear friend, K.  See how red my face is there? (I’m on the right).  That’s how red my face gets when I’m run.

Plus it was cold.

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I was so excited to get my first medal.  Only walkers got finisher medals in this race.  The medals were donated by a fellow runner.  I thought that was so nice.

#2:  Ludington New Years Resolution Run – 1/1/2014

Since this was a resolution run, there was no official time keeper other than a woman with a watch at the finish line.  We were around 49 – 50 minutes or so.

#3:  Cocoa Classic in Detroit.  April 6, 2014 – 102:03

I had never seen such a huge crowd of people waiting to run before.  Although the race was poorly organized, it was a blast!  My school friend K and my sister D joined me.  D has an autoimmune disease as well – Myasthenia Gravis,  and she had never done a race before, so we walked the entire thing.  Some pictures from the event:

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#4:  Berkley Days 5k – May 10, 2014 – 45:19

I was so nervous for this race because it was in the town in which I was raised.  Since I’ve put on a considerable amount of weight AND I was (and still am) a new runner, I didn’t want to make a fool out of myself.  I was supposed to meet people to run the race with them, but all weren’t able to make it that day so I did it by myself.  Luckily, I ran into my sister’s best friend from high school, so that made it a little more fun.  It was a beautiful day, but the best part of the race was running with all of the Girls on the Run girls.  They were a hoot!

Some pictures:
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This is my old stomping grounds.  It was neat to be back home.

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And meeting up with my sister’s best friend from high school was a huge plus!

Now, you’re probably looking at that shirt of mine wondering why I have all of those names on it – it’s my NMO awareness shirt.  A friend of mine has a son who has NMO – he’s my son’s age, and a few months prior to me starting to run she began doing runs for awareness for her son’s disease.  I thought that was a fabulous idea, and with her permission, I did the same thing.  The shirt I am wearing says, “NMO – I may have it, but it doesn’t have me!” and the names you see in black are the names of many other NMO patients.  Yes, I have their permission and oh my word, is that shirt ever faded now!!

#5:  Ham it Up, Manistee MI – May 17th, 2014 – 46:11 by my time (47 something their time).

This was one of the races that I walked away feeling not worthy.  I ran that race with all of my heart (well, walking is my running, so I actually walked it with all of my heart) and the race director didn’t log my time.  Instead, he made one up.  So, even though I started and finished at the exact time as my girlfriend K, her time is a good minute or so faster than mine.  Is it a big deal? No, but the way I was blown off when I asked about it was a little off putting.  It’s as if only the elite runners matter in this race.  Will I do it again?  I’m not sure.  Maybe if I can skim some time off.  I know I’m slow, but I donated money as everyone else did, ya know?

#6:  Ludington Lakestride 5k – June 14, 2014 – 50:40.

K did this race with me again and we were a little slower.  I had a hard time running that day.  I don’t remember why – maybe it was the beautiful scenery.  No pictures, but we did get a nice medal.

#7:  Firecracker Run, Manistee MI – July 5th, 2014 – 51:41

I ended up walking this race with a neighbor so we could catch up on each other’s lives.  We were slow, but I didn’t care.  I had good company and it was a beautiful day.  This was the first race my son B did – I was so proud of him!  His time:  36:07.  Here’s a picture of the two of us that day:

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#8:  Mount Olivet Sunrise Run – Detroit – July 13, 2014 – 54:15

This run was an emotional run for me.  It was held at the cemetery in which my grandparents and other family members are buried.  I ended up walking it with an old grade school friend (the same one I did the Cocoa Classic with).   We kept stopping to look at headstones and K found a friend of hers there.  It was a very nice walk, albeit it rained, which actually improved the ambience of the day.  It wasn’t the best with organization though.  I wouldn’t do it again if my grandparents weren’t buried there.  The pancakes after breakfast were a nice touch.

My sister and her son and another grade school friend joined us for that day.  B’s shoes kept untying, so it was a frustrating day for him.  I don’t remember his time, but it was in the 30s.

Some pictures from that day:

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My sister, her son, my son and me – we were happy to be on cemetery grounds when we got there.  We didn’t drive through the safest of neighborhoods to get to Mount Olivet.  So sad.

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The six of us after the race (or was it before?) I don’t remember.  😀

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My grandparents’ headstones.  This was the first time I had visited my grandfather’s grave since he died in 1998.  I was a little bit emotional.  My grandmother died when my mom was 16.  I remember having picnic lunches on her grave when I was a child.  Nice memories.

#9:  Escape to Belle Isle – Detroit – July 19, 2014 – 47:35.6

I loved this race.  I loved the shirt.  I loved the location.  I loved the medal (adorable!)  I loved the fact that my son ran it with me. I loved everything about this race and I can’t wait to do it again this coming year.  My sister came, but didn’t run.  She hung out waiting for B to finish it.  He instead waited for me and we finished it together.  It was also nice seeing a different grade school friend.   No pictures of him, but it was good to catch up.

Picture of that day:

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And our medal.  I wish I had a better picture of the ribbon.  It’s one of my favorites!

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#10:  Color Run – Grand Rapids – Aug. 2, 2014 – No time noted

Oh my word, this was so much fun!  I ran it with my brother and two of my cousins and we were FILTHY when we were done!  They all took off at the starting line as they were so much faster than me, and I just hobbled my way through the race and got as dirty as I could.  I loved EVERY second of this race!

I was so inspired by one woman who did the race walking with two canes.  If she can do it, you can too!  I walked with her a bit, then ran some and found some friends from here that were doing the race as well.  It was great to see them too.

After we ran the race, we went out to eat with my cousins.  It was wonderful to catch up with them.

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My brother and my cousins – pre race.  I had my phone put away and should have downloaded all of the after pictures that my cousins took, but just imagine us FILTHY.  What a blast, but the picture of me with my brother – I look ridiculous!!

#11 Summerville Ebenezer 5k – Alexandria, MD – Oct. 4, 2014 – 49:04

I loved this race.  I was in Maryland for a conference for NMO patients and I thought, “Why not do a race while I’m there?”  So I did.  I found them on Active.com and while I had a hard time finding the starting line of the race, I ended up enjoying almost all of it.

Unfortunately, I rolled my ankle about 20 minutes before the race started, so I asked if I could change my bib to a walker and not a runner (they had separate categories for runners and walkers).  That was a wrong move on my part, but I didn’t know better.  There were walkers who were running, so I guess it didn’t really matter, but I would have liked to walk/run and it was stupid of me to panic and change my race.

Still, I had a great time.  It was put on by a church and the people who ran the race were some of the kindest people I’ve ever met.  Many of them asked if I was new to the community (I kind of stood out being I was one of the few non-African Americans there) and when I told them I found their info on the web, some of them were genuinely surprised!  Also, many of the people who did this race were first time walkers and their conversations were HILARIOUS!  “We signed up for this?”  “How long is a 5k again?”  All joking, of course, but so much fun!  I especially loved the signs they had along the route with encouraging Bible quotes and I absolutely LOVED the after race meal – Chicken Caesar salad and fried chicken!  If I am ever in Maryland and I’m able to do this race again, I definitely will!

Pictures along my route:

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We interrupt this boring blog to tell you about what happened NEXT!!  While I was still in Maryland, I got a call from my mom two days later – she got the call for a lung transplant!!  My son J was with me, so we quickly packed up and drove home as quick as possible. I missed her going back into surgery by 15 minutes, but her surgery was extremely successful!  It’s currently March 23, 2015 and my mom is still doing great!  What an incredible life changer for her.

This changed EVERYTHING for me – I became one of her primary caregivers for a few months and from October 5th until the first week of December, I was primarily downstate to help my parents out.  My mom was a perfect patient and I was glad to do it. Unfortunately, even though I was still running, I gained about 10 pounds!  My mom wasn’t eating much before the surgery, but after – she was hungry and you know me, I don’t turn down food.  I’m still fighting that weight gain and need to start taking weight loss seriously.

Here’s a picture of my mom and one of her life-saving surgeons about 10 days after her surgery.  When he walked into the room, I started to cry:

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It was amazing to see my mom breathing without oxygen.  In fact, she was doing so well that she wouldn’t STOP talking!!!  Those poor nurses!

ACK!!  I just lost half of my post, so I’m doing the next couple of races all AGAIN!!  Grrrr….. let’s hope I remember everything.

Okay, where was I?  Mom had her transplant, I moved down there temporarily, my husband held up the fort here in town and my awesome kids got themselves to school and church on their own.  I’m so proud of them.

The house? Well, it suffered.  In fact, I left the kids $200 to buy some healthy food and when I came home the garage was filled with pizza boxes and the food I made for them was still in the fridge or freezer.  Still, they didn’t starve, but my youngest kept saying to me, “I just want some fruit, mom, I just want some fruit!!”

Back to the races…

#12:  Detroit Marathon 5k – October 18, 2014 – 44:51

I enjoyed this race.  It was along the waterfront, which is always nice.  I have a love for Detroit in my heart and I always feel safe there (well, not when there was gunfire at Henry Ford hospital), so this was a very nice run.  I especially loved the pre-race expo they had for the marathon.  It encouraged me to sign up for the half marathon this year.

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#13:  Despicable Run – Gross Isle – Nov. 2, 2014 – 46:52

Who doesn’t like running with minions?  I loved this race! It was a nice course in a nice suburb with nice people.  What more could you ask for?  I had a couple of people ask me about my shirt and they stayed and cheered me on after they finished.  Isn’t that nice?

Of course, I had to get a picture of me with a minion for proof that I was there.  😉

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And isn’t this medal adorable?

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#14:  iCrush Diabetes Run – Big Rapids – Nov. 9, 2014 – No time noted

This run was through a lovely park along a river walk.  Do I know the name of the river?  Of course not.  I’m sure I did when I ran the race, but with NMO and being 44, it’s long forgotten.

I really enjoyed this run.  Dr. Singh is the man who put it on, and before the run he had a short seminar on diabetes and running.  Since my dad is diabetic, I found it to be very informative!  The people there were also very nice, and it looked to be a family-run event.  I believe his mother or mother in law also was there.  Believe it or not, it was such a small run that I won 1st place in my age group (there were only two of us in my age group).  Still, I won a nice mug and everyone got a finisher’s pen for finishing the race – a nice touch.  The tech shirt was nice too and the food after the race was fabulous!  It was catered by Ferris State University’s cafeteria and it was the best spinach wrap I have ever had.  Absolutely delicious!

#15:  A Christmas Story Virtual Run –  November 28, 2014 – 47 something.

Now, I broke my phone when I was on my last run.  It flew right out of the case when I was talking (yeah, shouldn’t talk with my hands), so I went without a phone for a month.  Without a phone, I didn’t track, but I did do it.  I did it here around my neighborhood.  With the virtual pack, I got last year’s medal (a leg lamp, no less!), an awesome long-sleeved t-shirt, a bib (so cute) and two packets of Ovaltine!  I really want to do this race in person some day.

#16:  Kintera Jingle Bell Jog – December 6, 2014 – 43:34

This was my fastest race of the year.  I was really surprised that I was able to do it so quickly.  Well, quickly for me that is…  I paced myself against a runner that was slightly ahead of me and I think that really helped me.  The race was also in Detroit, one of my favorite places to run, so I thoroughly enjoyed it.  Detroit has a special place in my heart, so every time I get the opportunity to run there (or visit), I make sure I take it.  Plus, the Christmas costumes were fun.  Maybe I’ll dress up next year.  As for repeating this race, it’s a definite!

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#17:  A Christmas Story Virtual Run – Dec. 10, 2014 – 48:14

No, I’m not making a mistake and you’re not seeing double.  I did two of them this year.  This particular race was THIS year’s race.  Same bling, but a different medal.  I did this race on the treadmill.  I hate running on the treadmill – I always think I’m going to trip and fall, so I tend to go slower.

#18:  Belle Isle Fifth Third NYE Race – 12/31/2015 – 55:18

I have never been as cold in my life as I was the day I ran this race.  Oh my word, it was bitter, bitter cold.  We were in the negatives with the windchill and although we were prepared by wearing almost everything we owned, we were still FREEZING!  I ran this race with my sister and my niece.  My nephews and my son B also ran a race that day, but they ran the race for kids – it was only a mile.  They were smart.  My sister, my niece and me?  Not so smart.  My niece, A – she took off and good for her, she wasn’t as freezing as my sister and I were, but us?  We walked the whole thing. My sister was having MG problems, and I wasn’t going to leave her alone, so we walked it.  It was a beautiful walk, nice and sunny, but very, very cold.  Very cold.  Oh my word, it was cold. And windy.  And cold.  Bitter cold.

#19:  (Or #1 for 2015) – Farmington Hills Commitment Day Run – 3.13miles 1/1/15 – 48:44

I shouldn’t have done two races two days in a row, but I did and I’m glad I did.  Farmington Hills was MUCH warmer than Belle Isle the night before.  My brother and I did this race together.  No pictures, but we received a nice shirt and a high quality medal. I’d do it again if I were in town.  The problem with this race and the one the night before is that the rest of my family with the exception of B were up at home, so I didn’t get to celebrate with them on New Years Eve.  That was weird being without my husband on NYE.  Not sure if I want to do that again.

#20:  Running with Curves Virtual Run – Feb. 9, 2015 – 49 minutes or so

My app stopped working when I was running, so I lost track of time.  This run was another virtual run on the treadmill.  I found Running with Curves online through Facebook – it’s a wonderful community that is so supportive to non-traditional runners – you know, those of us with curves.  I just love this community.

#21:  Erin Go Braugh – Duarte, CA – 3/7/15 – 44:34

Two times I’ve had that time!  I LOVED this race.  First, I was in sunny California.  How could anyone not love that.  It was a smaller run with all kinds of runners in different parts of their journey and the people there were so welcoming.  They loved having someone from Michigan and a few people asked about my shirt.  I’ve been wearing the same green NMO shirt to every race I’ve run, and this time I wore a new one.  I had just finished an NMO patient conference in Los Angeles a few days before and was able to pass a new shirt around the room, so I have new signatures signed by patients THEMSELVES and the privilege of running in their honor.

Here are some pictures.  Gosh, I loved this run and wish I could do more with this group of people.  They were so nice!

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Yeah, not race related, but that’s me getting my blood drawn for the NMO blood bank at the NMO conference.  Anything to do to find a cure.  Now some actual race pictures:

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The Cheetah is this running club’s mascot, so of course, I had to get a picture of myself with the cheetah.  She has a name, but I can’t remember what it is!  The box of Lucky Charms was a part of a drawing for participants.  I didn’t win one, but had to get a picture of it.  I’ve never seen a St. Paddy’s Day version of Lucky Charms.  The medal glows in the dark. LOVE it!!  And I had to take a picture of the cacti there.  I was told it was ugly, but I had never seen cacti before, so I had to snap a picture. I loved this run and I hope that they have another scheduled the week I’ll be in town next year.

#22: Pi 3.14 Run – 3/13/15 – 53:27

Okay, I couldn’t do it on the actual day of the run because B had basketball games all day and I didn’t want to miss his games, so I ordered the virtual kit.  What a great race – I walked it because I was pooped from my long trip (which you’ll read about in my next couple of posts), so getting 3.14 miles in was exhausting for me.  It reminded me that I have this stupid disease.  Hate it, but I did the walk and for that I’m proud.  In the virtual kit, they sent me apple pie, a t-shirt and a medal.  How cool is that?

#23:  Corktown Race – 3/15/15 – 46:32

From what I heard, 8,000 people signed up for this race and thank goodness, it was a beautiful day!!  One person asked me about my shirt and told me he would run in my honor, how awesome is that?  It was nice being high fived by drunk people on the parade route.  If I can talk my husband into running this with me next year, I’m doing it again.  We will run, then pub crawl.

20150315_100009 20150315_100724 20150315_111706

Okay, so that’s a quick/long summary of my races for now.  If you can see, I haven’t really took off much time.  I hover between 46-47 minutes on average and I really need to work on that.  Problem with that is that sometimes my legs won’t let me do much, so running is proving to be difficult.  I’ve decided to follow a training plan for a half marathon (which I am signed up for this coming October), so I’m trying to follow that, but I’m finding my body only allows me to do so much.  It’s very frustrating.  Plus, with all of this excess weight I have (I’m currently at 170), my knees and ankles hurt when I run.  I’m trying to strengthen them, but it’s taking longer than my impatient self likes.  Hopefully, with time, I’ll get stronger.

My next post is going to be all about my MRI and then my awesome trip to Los Angeles.  Oh what fun!!

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Sheepishly saying hello….

Yeah, it’s been a year and a half since I last posted.  I’m so sorry!  However, I promise to get my butt in gear and regularly post from now on.

Now, to answer your most pressing question – was I able to fit into my wedding dress on my 20th anniversary?  HELL NO!!  I still weigh, on February 8th, 2015 the same, if not more, than I weighed the last time I posted.

Let’s just say I’m not consistent.  Or I’m lazy.  Or it’s the NMO (well, it’s not. It’s my choices).  Anyhoo, the weight is still there.

I’m feeling pretty good though!

So, since the last time I posted, I think I’ve run/walked about 22 5ks?  Tomorrow I will list them all for you.  I decided sometime in December of 2013 that I should be doing something with these legs of mine since I CAN walk and many people with NMO can’t.  My goal was to finish 12 5ks in 2014.  Sometime in January, that switched to 14 5ks in ’14 and I finished the year off with 17 5ks.  So far this year, (2015), I’ve done two, but I have three more on the schedule for February and March and in April I’ll be doing my first official 10k.

My goal is a half marathon this year.  All I want to do is finish it.

Things have been pretty busy here.  My eldest child is a senior in high school.  Middle is a junior and my baby is in 5th grade.  Life has kept me pretty busy, and although I kept saying I’ll update this blog, it never happened.  I’ll be more consistent this year, I promise.

2014 was a year of change.  My mother was very sick with pulmonary fibrosis and as God would have it, had a lung transplant in October.  We are VERY blessed as she is doing incredibly well.  I took a few months off of being a full time mom to being a full time daughter to my mom.  I loved every second of it.  She’s a VERY easy patient and is now able to successfully take care of herself.  She’s even traveling!  I’m so happy for her.

So that’s it for now.  I’m managing my NMO symptoms pretty well, though I do love my sleep and seem to sleep more than I’m awake, but I’m still above ground and able to walk, so I’m THRILLED with life right now.

See you soon!

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The Moon Face is Beginning to Go Away

The Moon Face is Beginning to Go Away

Thank God.
Now I know it’s been a year, (OH MY WORD, A FULL YEAR?) since I’ve last posted, but seriously, all is going great!  I’ve only lost about 11 pounds since I’ve last posted, so that kind of stinks, but hey – I’ll take it.

The last month I’ve been working out nearly every day.  I have only lost three pounds, but I’m able to do pushups and planks now, so that counts for something, right?  I can also tell that my face is finally starting to lose the swelled up moon face look from the prednisone.  I’m hoping that by the end of the year, I’ll start looking like myself again.

Speaking of the end of the year – the beginning of NEXT year, January 8th, 2014 – well that’s my husband and my 20th anniversary.  20 years and he hasn’t killed me yet!  My goal that was originally meant to be a joke is that I fully intend to fit into my wedding gown that day.  Four weeks ago is when I posted that challenge (which I thought went to my sister only, but went on my wall instead), and I haven’t lost a pound.  I have, however, worked out every day except Sundays and I’m keeping my calories around the 1300 mark.  I can tell it’s working – I can do those planks, remember?  But I’m beginning to doubt that I’ll lose the 45 pounds needed to fit into that old wedding gown of mine.

But at least it’s a goal, right?

Have a wonderful day. 😀

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I’m Steroid Free!

I am STEROID FREE!  As of Tuesday, May 22nd I am steroid free and I’m already seeing a difference in the swelling of my face.  I went on prednisone on March 21, 2011 and started the weaning process in September.

Dr. Weinshanker at Mayo Clinic told me that I may end up gaining weight.  So did my neurologist, but I thought “hey, it’s me – “I” won’t gain the weight.”  Little good did that do me – by July I had gained 20 pounds and by September 1st, I gained a total of 45!  YIKES!  And this included me going to the gym almost every day from July through September.

I immediately joined Weight Watchers in September and while I’d have a week every now and then of losing weight, the scale would not budge.  It was embarrassing to go weigh in every week and not budge an ounce.  I’d lose two pounds one week, then gain three pounds the next week and then lose the three pounds.  It was so frustrating.

It came to the point where I was getting lectured and I actually broke down and cried at one meeting.  It’s embarrassing to go in every week and not lose weight.  Very embarrassing when you see others who have joined since you earn a ribbon for losing 10 pounds and you haven’t lost ONE.

Here’s a recent picture of me.  Unfortunately, I don’t have any pictures of me with moon face because I was so embarrassed to have a picture taken.  I wish I would have done it because my face was so round.  Like a circle round.  Ridiculously round.

May 28, 2012:

Now I look huge here, but it’s not nearly as bad as it’s been.  Can’t wait to get rid of my chipmunk cheeks and start looking like myself again.

The redness on my face?  I think that’s either the NMO bothering me (my skin hurts all over) or possibly allergies.  I hope it’s allergies and not NMO, but the bee sting feeling is all over my body today.  I’m thinking I’ll have to hit the neurotin soon.

For what it’s worth, here’s a photo of me before I started steroids:  

See you later!

Posted in Devic's Disease, I'm a big dork, Multiple Sclerosis, Neuromyelitis Optica, NMO, Uncategorized | 1 Comment

Unsolicited Advice

I tend to be a magnet for advice.  I don’t know if it’s because I’m approachable, (or appear to be very messed up), but people tend to offer me all types of unsolicited advice just because I exist.

For instance – when I was pregnant with my firstborn, there was a wonderful Chinese woman who truly believed that if I raised my hands over my head, I would strangle my unborn child.  She would follow me into the office supplies room and make sure I wouldn’t reach up to grab anything.  She would get it for me.

I had another gal at that same job that monitored every bite of food I put into my body.  After I had miscarried my first child she caught me drinking a Coca Cola.  She insisted I miscarried because of Coca Cola, despite the fact that I hadn’t had a sip while I was pregnant.

When my eldest child was about 2 years old, I had a man follow me around Farmer Jack’s concerned that my child wasn’t wearing socks.  I had learned from previous trips to NEVER allow that child to wear shoes or socks in a grocery store as I would be looking for them for hours.  She was a little Houdini when it came to hiding her socks and shoes in various aisles and to avoid being stuck in the store looking for said shoes and socks, it was easier for me to just keep them in my pocket for the duration of my shopping.   He approached me a few times on different shopping trips (he was a bagger at the store) about my lack of care for my daughter because of her bare feet.  It took everything I had in me to just smile and tell him that yes, she is well cared for and look here – her socks and shoes are right here with us.  She’ll be fine and thanks for your concern.

My favorite piece of advice I’ve gotten is from the young man at Wendy’s when I was pregnant with my first child.  I was 9 months pregnant, ready to pop and unable to wear my wedding ring.  I also probably looked like I was about 12 years old.  He kindly (he really was kind) asked me if I were embarrassed to be pregnant and not married and I should consider marriage before getting pregnant.  Little did he know I WAS married and not only was I married, I had been married for four years to a Family Practice intern who was just finishing up his internship at a local hospital.  The reason why my rings were off was because I was so swollen, not because I was a teenage pregnant mom.  (I was 27 at the time!)

I can go on and on.  Somehow people think that I need their unsolicited advice.

Don’t get me wrong – some of that advice has been very helpful!  A former co-worker gave me the best advice I could ask for – “Whatever you do, Michelle, don’t ever EVER wake a sleeping baby.  If she needs to sleep, let her SLEEP and whether or not you’re tired, take a nap with her.  You won’t regret it.”  She was so right.

Or that time I was at the mall and I couldn’t get the stroller to unfold in the pouring rain.  A woman driving by jumped out of her car and flipped it closed for me.  I don’t remember the method she used, but the trick she taught me to get that puppy folded down in no time was very helpful.

And the advice from an internet friend about dealing with teenage attitudes has been priceless.  Her advice to have children “practice” slamming doors has proved to be very effective in eliminating any door slamming, sighing or whining in this house.  If it starts, we immediately make the child “practice” the foul behavior over and over until we are all howling with laughter.

Since I was diagnosed with NMO, you can imagine all of the advice I’ve gotten from well meaning, but very ignorant people.  “Drink this vitamin shake and your symptoms will go away.”  “If you ate aloe, you’d feel much better.”  “You should do yoga, since I started yoga, I feel great.”  “I can’t believe your doctor put you on those medications.  I’m on (name that drug) and this works for me.”  “Do you know the reason why you are sick is because you clean with ‘this’ chemical?”  “It’s all in your head, you know that right?”  “Have you ever thought if you’d lose weight you’d feel better?”  And my personal favorite:  “You just need a better attitude!  Suck it up and move on.  You’re not sick.  You certainly don’t look sick.”  I could go on and on.

Normally when I get advice like that I smile.  I know these people mean well and I bite my tongue and smile like I did with the bagger at Farmer Jack’s.  I truly believe that people want what’s best for you and they want to help you, but they don’t know what to say, so the most ignorant dumb things come out of their mouths.  Their intentions are pure, so it’s hard for me to criticize them.

It does wear me out though.

My husband is a doctor and a darn good one.  I wouldn’t say he’s “brilliant” but his patients do.  He’s got a wonderful bedside manner and he’s a calm and very rational person.  I’m proud of his accomplishments.  I’m proud that once he sets a course, he doesn’t deviate from it.  He’s a good man and a great friend.  He’s a great husband as well and a very wise man.  He’s a fantastic father with wise and thought out intentions.  I am very blessed to be his wife and very blessed for him to be the father of our kids.  He is compassionate.

When I was first diagnosed with NMO it was a terrifying scene.  It was a disease that neither one of us had heard of.  It was a disease that my neurologist wasn’t all that familiar with.  In fact, I was his first diagnosis of NMO.  It was unknown territory for all of us.  The question on how we were to discuss this with our children weighed heavily on our hearts.

We decided that we would not raise our children in a bubble.  This was our new reality now.  The kids knew mom was sick for years anyway – now this condition had a name and we explained what NMO was to the kids in very kid friendly and kid APPROPRIATE terms.

It’s been exactly a year since that diagnosis.  The kids understand that NMO gives me good days and bad days.  They know that when those bad days happen, there is nothing to be afraid of, but that mom needs her rest.  They know that NMO is a very bad disease, but Mom’s doctors are taking great care of her and the kids SEE and experience that Mom is doing better.  I am able to do things with the kids that I haven’t been able to do in 10 years.   The kids are witnessing this and they know it’s because of the excellent care I am under.  I believe this diagnosis has made our family stronger.  No longer is mom missing events because of some unknown thing – it’s NMO rearing it’s ugly head and the kids get that.  It has turned ALL of us into more compassionate people.

Still people think it’s their duty to give me advice.

Yesterday I received more unsolicited parenting advice, but this time it was directed toward how I manage my disease and how I expose it to my children.  It inferred that I  (an intelligent and caring parent) had not thought properly on how to discuss my disease with my children and this person took it upon herself to tell me so.  Rather than gather all of the facts of how I communicate with my children, she chose to give me unneeded and unsolicited advice I should “consider.”  She has no idea of how much time we spent with my children discussing this disease, how it may affect me, and how differently it affects others.  She doesn’t know that my kids know that mom is doing GREAT and although other people that have NMO aren’t doing well, the disease affects EACH PERSON differently.  She doesn’t know (or care to remember), that both my husband and I are educated people who clearly must have thought things through LAST YEAR  with the diagnosis of this horrible disease and how we would let our children know about it.  She doesn’t know all of the resources, articles, HOURS I have spent researching the disease and discussing it with other people with NMO on how to talk with my children about it.  She doesn’t know that I’ve discussed it with a psychologist who gave us the thumbs up on how to deal with this disease and our children.  She doesn’t know that we have a very open and loving relationship with our children and that we have teachers at school on “alert” if there are any issues popping up with our kids because of my disease.  She doesn’t know that we have chosen to raise our children in the reality they live in and not a bubble world free of pain.

She doesn’t know all of that. So I’ll forgive her inappropriate comments like I forgave the Wendy’s employee and the bagger at Farmer Jack’s and the sweet Chinese lady who meant so well, but was so far off base when it came to advice.

When this unsolicited advice came through, it was hard for me to not laugh in a “I can’t believe she said this” type of way.  However, my husband wasn’t so lighthearted.  He’s not used to unsolicited advice from people unaware of the whole of our situation, so he’s still trying to calm himself down.  Me?  I pray for them – for understanding, for wisdom, for compassion and the willingness to see that there is always more to the story.   I have to admit, the thought of “telling her off” did cross my mind a couple of times.

My hope that if you’ve read this post (and made it this far – I’m sorry I’m so wordy), that the next time YOU give someone unsolicited advice you try to see the whole picture before giving it.  Chances are you’re only seeing a tiny fraction of what’s really going on in that person’s life and your advice, though well meaning, can be very hurtful, condescending and inappropriate.

Posted in Devic's Disease, Multiple Sclerosis, Neuromyelitis Optica, NMO, Rambling posts, Uncategorized | 6 Comments