From day one I’ve been told that with MS you really need to be careful not to overheat. “Keep your core temperature down”, they say. From what I understand, heat makes it hard for the messages to travel down my already damaged nerves. So without trying to be too neurotic or paranoid, I’ve been careful to stay out of the heat and drink plenty of water.

And then the air conditioning at work broke. It took me awhile to realize it was getting hot in the office. I left our suite to go to the bathroom and when I came back I walked right into a wall of heat and humidity. I looked at the thermostat and it read 79 degrees. Yup, it was broken and wouldn’t be fixed anytime soon. They were trying to track down a part that needed replacing.

I was hoping this overheating thing was a myth Monday proved it was not a myth. I had been feeling progressively worse as the day went on. It started with my eyes. I was getting some double vision but I was also feeling nauseous and dizzy. I made a few trips to the water cooler and noticed my legs were acting kind of sluggish. That and my left hand was having trouble typing. I was baking. So, not knowing how bad it was going to get I decided to get out of the oven while I could still drive safely. I left work one hour early, which drives me crazy to have to do, but once I spent five minutes in the car with the a/c cranked I felt a ton better. Thankfully the air conditioning at the office was repaired by the next day. Today went much better.

On a related note, this is our first summer having central air conditioning here in our home and I would just like to say thank you JESUS!

It’s sometimes hard to believe that less than four months ago I was headed for a wheelchair, and now I’m walking and climbing and frolicking even! I’m trying to stay positive. Don’t misunderstand, I am extremely thankful to be walking as well as I am, but I am having a hard time finding my mojo. Somehow I lost my groove in the midst of all I’ve been through in the last year. I have glimpses of it at times but it doesn’t seem to want to stick around.

Do you ever want to just go away? I feel that way sometimes, more frequently than I used to.  The problem is I don’t know what I’m running from. I suspect I’m running from myself, but that just won’t ever work. Whereever I go, there I will be.

I want to be funny and clever. I think I used to be. What happened? Oh yeah, MS arrived on the scene. What’s funny is that I am actually one who likes getting attention (I am a middle child, after all), so sometimes I’m thankful for the disease because it gives me exactly that. But then other times I get sick of people asking me “How are you doing?” like they are uber concerned. I believe they are truly concerned when they ask, but I really need them to know that’s it really not that big a deal. Or maybe I’m trying to convince myself it’s not that big of a deal and the concerned onlookers make that hard to do.

But it is a big deal! I’ve got a disease! A permanent one! I have to give myself shots and everything! Pay attention to me!

See, maybe I’m just mad at myself for liking the attention so much. The real truth is that I’m angry. I don’t like being angry. It’s not an emotion that I’m used to having around so often, but lately it’s been lurking constantly.

I suppose it’s just a normal part of the grieving process and it won’t be around forever. I’ll climb out of this funk sooner or later. I’ve got my legs, see?

It’s a little late to post about it now, but I just wanted to share that we had a successful Walk MS 2010 here in Lansing, Michigan. The Griddle Bandits team raised $2500, which I say is pretty good for the first year! It was a great chance for my friends and family to get out and do something for the greater good. Multiple sclerosis sucks, but with fundraisers like these it will help researchers come that much closer to finding a cure.

It felt good to be doing something to help the cause but it also felt good because I know that my family and friends were doing it to support me, to let me know that I’m not alone. They all wore runners tags on the backs of their jackets that said “I’m walking for… Mindy, my daughter, my sister, my wife.” I felt extremely loved and supported. I’m so glad that my brother brought up the whole idea. It was a wonderful experience and I do hope we all participate again next year.

My big brother and me, proudly representing the Griddle Bandits team!

Walking is so underrated! I am just so happy to be walking and I don’t care who knows it! My legs were fading fast and I was getting so scared that I was heading for Wheelchair Land, so when the neuro put me on steroids and it worked, well let’s just say I feel like I’m a walking miracle. And now I walk because I can. I walk as much as I can, I take extra trips around the office to get water or give people blank pieces of paper or return that pen that someone left on my desk last week. I’m on the treadmill every morning, walking walking walking. And it feels so good. To walk. To tell your foot to rise up from the ground and watch it obey. To move your leg forward and steadily lower your foot back down. And then to do it again on the other side. And then the other. And then again. These are simple motions that we all take for granted. We learn these complicated steps as children, as toddlers, and then once they are learned we keep them stored in our memory and never really think about them again. I don’t ask my 2 year old son how it is that he keeps making that trip down the hallway without falling. I’m not even amazed anymore that he can walk on his own (but I was pretty darn excited when he started). 

Perspective is a beautiful thing. I walked two miles last night. In a row. We took a family walk to get ice cream. Mike pulled Luke in the wagon and I pushed Natalie in the stroller. I couldn’t have done it without the stroller of course, but the point is I did it! The first mile went extremely well, just as I expected. That’s close to the distance I walk on the treadmill every morning. It was the second mile that gave me a challenge. I had to slow down and I really had to lean on that stroller, but I was not the least bit discouraged. Why? Because I had stared Not Walking  in the face. I didn’t really care for him so much! I’ll take Walking Slow over Not Walking anytime.

All this walking is getting me really excited about the Walk MS coming up on May 2nd. It’s a 3 mile walk and I had thought that I would probably need a scooter or wheelchair in order to complete it but after last night I think I just might be able to do it! Oh this is the perfect spot for a shameless plug, isn’t it? My family formed a team for the Walk and we are taking donations because MS is very expensive to treat and they are still searching for a cure (and making great strides at it, if you ask me!). If you want to support the cause, please visit the Griddle Bandits team page HERE.

Okay, that’s all for now. I need to go. I think I saw a paper clip on the floor over there.

I’m taking steroids, so any Olympic hopes I may have had are squashed. Of course even without steroids I would have no chance because of course I’m not an athlete. I was in band, people. But I could have had a shot at the Special Olympics, right? The good news there is that Special Olympics are out too because these steroids are working! I had my first 500 mg infusion on Thursday at 7 am and by 11 pm that night I was ready to put my newly flamed-out walker into storage! Friday you could not wipe the smile off my face. I am in total utter amazement at how well it is working, and the burst of energy from the roids ain’t bad either. The nurses at the infusion center are fantastic, the recliners are comfy, and they keep the free coffee coming.

So my friends and family have been asking about this whole process with steroids and MS flare-up. What happens now? How long will this last? Will I need more infusions later? Well the answer is that I just don’t know. MS is such a mystery and is so different for everyone who has it. What they tell me is that the steroids lowers the swelling and inflammation in my nerves that is causing my symptoms to flare. So swelling goes down, symptoms subside. Now there is still permanent damage so I probably won’t get 100% function back and I may still have the weird numbness forever, but I’m getting used to the weird numbness and I can handle 90 or even 80% function. Anything below 80% though and I start to get cranky.

I really don’t mind using the cane. It’s lightweight and a lot easier to transport than the walker. And it has become a friend to me, keeping me balanced and safe out in public. And it’s a great conversation starter. I actually struck up a conversation with a woman who works in my office building. She saw the cane and started talking about her ailments and the few times she fell this winter and how she was excited to have the snow gone. Snow and ice is dangerous for walking. We were having a really nice conversation until she started going on about Jesus coming back and End Times and all that. I mentioned to her that I was a Christian and I had read all about it, so she says… “oh, well if you’re a Bible reader take a look at this.” And she pulled out of her bag two Jehovah’s Witness tracts. Let me tell you, that’s a conversation killer. “Well it was nice to meet you, I’ve gotta go to work now.” Ugh.

But back to my prognosis. The steroids are taking care of my flare-up, relapse, attack, whatever you want to call it. I really believe I’m only having this flare-up so soon after the last one (September 2009) because I just had a baby. They tell me it’s really common within the first 3 months of having a baby, and this relapse started just after Natalie turned 3 months old. So I’m right on schedule! With that said, the best case scenario is that I get this relapse cleared up and live many more years without another one. I’m just going to keep eating right and get back to my previous exercise routine (however modified) and hope and pray for the best.

Stuff like this really changes your life. I don’t know if it has made me stronger or just brought out strength that I didn’t know I already had. I almost think it’s the latter. It’s also causing me to care a little more (just a little) about taking care of my body. It’s more important that I eat good healthy foods (food is fuel!) and to stay strong in my muscles to help combat the loss of physical strength and balance. And all of that attitude spills into other areas: I’m brushing and flossing my teeth twice a day now because I am done with getting fillings. I’m washing my face on a daily basis and keeping my hands away from my chin because I’m sick and tired of the acne. I’ve said it before but I’ll say it again: I’m finally growing up!

As if tax season wasn’t enough fun for me, I’m also in the middle of an MS relapse! So we are keeping our sense of humor about it. My legs, the left one in particular, has been so uncooperative that walking with a cane is even difficult. Walking had become such a frightful chore until my sister loaned me this gem:

It's a purse on wheels!

My neuro seems to think a round of steroids will help lower the swelling in my nerves and get me walking again, so I went in for my first infusion today. It’s 500 mg of Solumedrol, which is a very high dose. They tell me if I took that much orally it could kill me. This way is much safer (they assure me). It’s almost like being at the spa, the way they cater to me here. Free coffee, pleasant conversation. Forced relaxation isn’t so bad. And it’s basically free since I’ve already met my insurance deductible this year. I can take four more mornings like this, no problem!

Steroid Infusion Day 1

Today I am deciding to give up. Not giving up on fighting MS or whatever the hell that means, but giving up on trying to be pleasant 24/7. I’m about to crack. The dam is leaking. I’ve been on the verge of tears for too long than I care for. To give you a bit of perspective on me and my tolerance for crying, too long means around two weeks. I’m tired of being on the verge of tears. I’m sick of being consumed by this disease. I’m done hearing myself talk about it all the time (as are those around me, I’m sure).

So here is what needs to happen. I need to stop pretending everything is okay, accept what’s going on with my body, embrace it, and move on. I’m moving through the stages of grief, that’s all. Denial, anger, bargaining, depression, acceptance. I imagine I may have to move through the stages again with every relapse, but have hope that it will get easier each time.

I still have so much to be thankful for. I have an amazing husband. Beautiful son and daughter. Terrific extended family and friends. Great job, church, house, a car that runs. And to top it all off I now have a cane with flames. So take that! If I’m gonna live with this disease I’m gonna do it with some syle.

Can we talk about me for a minute? Well, of course we can. It’s my blog, right?

Here’s the deal: I believe I’m having an MS relapse. Last year when I had my first (or second if you count the third nerve palsy in 2004) attack I had all kinds of numbness from my breastbone to my toes and I couldn’t walk a straight line to save my life. My balance was all messed up and my legs were weak. But then it got better. I wouldn’t say I got 100% function back, but I at least felt like my gait was starting to resemble normal. Now normal has left the building. The numbness is back, the weakness especially in my left leg, my gait and balance are all over the place. Not to mention my left hand is starting to feel a little weird too. I’m officially walking with a cane. I bring it with me wherever I go and it helps me to walk a little faster and safer. If I start to lose my balance I lean on the cane. It shares the burden of weight with my left leg so that my left leg doesn’t fail while I’m trying to step with the right.

When I first started using the cane I felt quite embarrassed, like all eyes were on me. That went away after a few days of realizing that it was mostly in my head. Once I got used to having the cane around it wasn’t a big deal. And obviously the benefits far outweigh any negative reactions I could possibly receive from others. The cane is helping my legs to not get fatigued so quickly and is keeping me safe.

My only issue now is that the cane I use is boring. It’s just a shiny blue and black marble cane and is shaped a little like a shepherd’s hook. If I have to carry this thing around I want it to have a little personality, a little flair. I’ve seen all kinds of different canes on the internet and some of them are pretty cool and not even that expensive! So I’m thinking about getting one. We’ll see.

I did get a new pair of glasses and that has me feeling pretty good. They are a nice design, not all that different from my old glasses so that’s not the exciting part. The exciting part is that they refined my prescription and added a prism to the left lens. I am blown away at how well I can see now! The world is a much clearer place! And with the prism and anti-glare lens my eyes don’t wig out with the bright light anymore. It’s amazing, simply amazing. The true test will be at the grocery store because that’s where I generally have the most trouble. Lots of things to focus on, bright lights, moving objects. I’m very anxious to see if these new spectacles can pass the test.

Walk MS is an annual event held by the National MS Society to raise funds for multiple sclerosis research and programs. My hometown of Lansing, Michigan happens to be one of the lucky locations of this annual event, and my brother came up with the brilliant idea of having our family participate in the walk as a team. This was a way he thought he and the other members of my family could support me in my new diagnosis as well as share in doing something good for others.

My brother has already established our team, Team Griddle Bandits, and I’ve decided I want as many friends and family as possible joining us for the 3 mile hike. Our team goal is to raise $1000 but I think we’ll surpass that in no time. If you are interested in joining our team, email me and let me know. Or if you would just like to donate to the cause, visit my donation page HERE.

You know how in “What About Bob” Bob takes a vacation from his problems? Well, I’m sort of taking a vacation with my problems. An unplanned one. And it includes room service and all. I’m at the hospital. I’ve been here since Wednesday and I’m not sure when they’ll let me go home.

It all started on – wait, if you are squeamish you might want to stop here cuz I will not be sparing you the gory details. If you are not squeamish, have a seat. This is gonna be a long one.

It all started on Tuesday when I woke up at 3 am with severe abdominal pain.  It was the kind of severe that had me doubled over, although I could still walk a little. I debated in my head whether I should go to the emergency room, but after some time decided to take a mega Motrin and try to get some sleep before calling the doctor in the morning. I was able to fall asleep and the pain seemed to subside quite a bit, so I got up and went to work at the usual 7:30 am. I’m not real familiar with the location of all my organs so I wasn’t quite sure what kind of doctor I needed to call, but I’ve always had a quick response from my obstetrician’s office, so I called them. I talked to a nurse and explained the pain I was having and also mentioned that I had been having trouble emptying my bladder lately so I thought maybe I had a bladder infection. She took down some notes and agreed to talk to the doctor and give me a call back. The nurse called me back a few hours later and told me the doctor wanted to see me that afternoon and get a urine sample. Good. We’re gonna get to the bottom of this.

I started drinking lots of water for the urine sample, but I was worried because I had only been able to “go” (the docs call it voiding) once that day. When I arrived at the doctor’s office, I was not able to void into a cup. However, because I had just started my first period post-partum, I was able to pass a golf ball sized blood clot. They were happy to keep it. Since I couldn’t void on my own and they needed a sample the only option was to catheterize me. When they did that they discovered that my bladder was quite full. I had a feeling but I had no idea how full it was. The doc said a normal person would feel a serious urge to “void” at 250 cc. I had 350 in my bladder and I only just barely felt an urge. Since it was late in the day and I wasn’t feeling crippling pain (yet) the doctor planned to send me home with the catheter in and a pee bag strapped to my leg (he said otherwise I would end up in the emergency room that night with an over-full bladder). I would come back the next morning to have it removed and they would teach me how to self-cath at that time. By then they would have test results back from the urine sample.

I went home feeling humiliated, dejected, discouraged, you name it. Having to go home wearing a catheter at age 31 is just not my idea of a good time. And being on my period doesn’t help because, you know, interference. Just too much going on there. When I got home that Tuesday night (after balling my eyes out the whole way) my son ran right to me and gave me a big hug and kiss. Then he looked at my tear-stained face and asked, “Mommy, you feeling sad?” Oh it just broke my heart. I told him “yes, I’m feeling sad, but I’ll be okay. Now Mommy needs to go to the bathroom.” And then he proceeded to hold out his hand to offer me help walking to the bathroom. Isn’t he the sweetest?

That was Tuesday. Tuesday I was in pain but I was functioning. By Wednesday morning that pain had exploded. I told Mike he needed to take me to the doctor and we made arrangements for Grandpa to come and watch the kids. We made it to the doctor and they did all as planned, plus an ultrasound to see what was going on in that abdominal region. They even let Mike sit in on the self-cath lesson so he could help me do it the first couple of times. Actually it was more like insisting than letting, but Mike was more than willing to do what needed to be done. The ultrasound showed nothing but they suspected appendicitis so they made a call to the emergency room so they would be prepared for my arrival.

I didn’t have to wait very long to get into the emergency room. They take appendicitis pretty seriously. The first thing they wanted once I got into a room was a urine sample. I tried and tried but still could not give one. They had to put another catheter in. Yay. Once they got the catheter in they hooked me to an IV, got some blood, gave me some painkillers, and started running tests. Wednesday was such a whirlwind. I had doctor after doctor coming in to push on my belly and ask me questions about the pain. It was excruciating. On a scale of 1 to 10, my pain level was at a 10. They had to try several painkillers to give me any sense of relief. With morphine I was still at a 10. With dilaudid I couldn’t even count to 10. It made me crazy. I was dizzy and heavy and paranoid. At one point I asked Mike if I was terminal. I thought I was dying. I was sobbing. I sort of remember they had taken the catheter out for some reason and I tried to void on a bedside commode but it just wasn’t working and I was freaking out. The pain was so intense I couldn’t move my own body, Mike had to lift me to help me to the commode. He wins husband of the century for all that he has been through with me this week. They did finally try a pain med called fentanyl and that helped. It brought the pain level down to an 8. Not much of an improvement but it did help and my head at least felt clear again. Fentanyl is my friend.

After a CT scan, blood tests, and another ultrasound they still couldn’t figure out what the problem was. They expected to see a high white blood cell count if it was appendicitis or some infection but mine was normal. It turns out that is because the interferon I take for MS lowers my white blood cell count, so an infection would bring it back up to “normal”. By that evening my fever spiked to 103.1 and my heart rate was up to 156, so there was no denying I had some sort of serious infection. Mike could see all the doctors congregated outside our door and they seemed to be intensely arguing over what the proper course of action was. It was seriously like an episode of House. By 11:30 pm they finally agreed that I needed surgery so they could see firsthand what was going on. Within two hours I was under the knife and within three and a half I was waking up from anesthesia and feeling almost human again.

Since the surgery it’s been a slow progression of earning back my privileges. I was on a liquid diet until yesterday at lunch time. I was on IV fluids for quite awhile. They finally took out the catheter (cuz they put that back in after the commode trouble) to see if I could void on my own. I was probably most excited about the catheter removal. Wouldn’t you be? The main problem with it was that I’m still on my damn period and pads just don’t fit well with big ole foley catheters. I counted – 7 times I needed to have nurses come and help clean me up. I’m all practiced up for life in a nursing home, let me tell ya. Modesty was out the window days ago. I just thank God I’m voiding on my own now. It turns out the bladder voiding issue is a common symptom of MS, and the infection my body was trying to fight just made that symptom worsen. It makes sense to me, at least.

What they found was an abscess near my ovaries and attached to it was my appendix. This is just one explanation, however. The doctors still don’t seem to agree on what actually was going on in my abdomen. Oh well, I just know I’m feeling better. They drained whatever was in there and removed my appendix. Now I just get to sit and wait for the cultures to grow so they can figure out which antibiotic to send me home with. For now I have to be on an intravenous antibiotic. As we say with our son after we put the toast in the toaster: “Now, we wait.”

I would rather be waiting for toast, obviously.