Picking Myself Back Up

There's been many trials that have occurred over the past months and some of them still exist. It's easy to take the angry road, the frustrated road, to see only the struggles.  The bible tells us different. To consider it pure joy...joy. James 1:2. But why?  Because verse 3 tells us it is the testing of our faith and produces perseverance.  But for what? Verse 4 goes on to say that perseverance makes us mature and complete.....not lacking anything!  I'll be honest, I'm good at this some days, some days I've held a grudge. The excuses to not go to church, to be busy, to keep a foot in both the world and Gods plan doesn't work.  It creates a slow fade. It creates worry, fear, and doubt.  God works for the good of those who love him. Romans 8:28. My kids are growing up and I want to be the example that I fought the good fight. I don't want them to worry. I want them to pray without ceasing. I want them to grow up loving the Lord above everything else. Some days I'm good at teaching this. Some not. I need to surround myself with a church family. I need to let go of the grudge and the worry about tomorrow for tomorrow will worry about itself. I've been here before...I've picked myself up and fallen again. I don't want to fall anymore. I want to inspire people. I want my kids, family and people to see Christ through me. 

Almost Half Way.

I finally feel kinda normal.  Like I'm finally not constantly being being looked at with a label.  Saying to people that I have MS still is awkward to say, but I don't have to say it often.  And when people ask how I'm doing, I feel like it's a normal everyday question.  Like they aren't talking about my disease anymore.  I don't want people to forget but I want them to remember when it counts.  The times that it matters, or when it's been a while and they are genuinely concerned.

I don't think I've gotten over the hurdle of complete acceptance and moving forward, nor do I think I can reach that point until I know this medication will be the right one.  In about a month from now I will have a clearer picture.  I will know if my lymph count has climbed back up or if it dropped. I'm thankful I haven't gotten sick and that I've been relapse free for almost 5 months now. But it's scary at the same time. My pattern has for the past 3 years to get sick about every 6-7 months. And once again we approach that time and just when I feel like I'm a bit normal I don't want to go back to being the sick mom, wife, friend. I want you to be able to ask "How's it going?", without a look in your eye or me having to answer "not great".  And I don't want to have to try and figure out a new medical treatment plan.  I just want to be able to move forward, 'cause once again I'm daring to get hopes up that you can keep seeing me as normal.  This next blood test is a half way mark and I want to keep moving forward so in a 6 months from now I can tell you I completed a full lap. And then I can keep moving forward instead of going back to the start.

Independence

I would probably describe myself as strong willed, opinionated, and independent.  I haven't ever had to really depend on someone before.  I like to be able to do things on my own, and my way. I grew up the youngest of 6, with my siblings being only brothers.  My youngest brother is 5 years older with oldest being 13 years older.  My mom went to work when we moved to Thompson.  I was 8 years old.  She started working full time when I was in grade 6. I've always been sort of "on my own" and I'm okay with that.  Obviously that's my personality as well but even after being married, Shawn worked a lot.  16 hour days a lot of the time, and we had little kids.  We've moved a lot and now finally seem to settling in.

After being diagnosed with MS I found it hard not to be busy. It's easier being a stay at home mom when the kids are little and you feel purpose.  I found it hard to stay at home and starting a cafe was a way to make me feel productive as well as be a part of fulfilling a dream of Shawn's.  I hate the feeling that we can't continue because I can't do enough.  I hate that it's me who can't fill the gaps and make it work.  His dream is falling apart because I can't help the business grow. He can't rely on me to help and I can't help and be independent in running this because of my health. That is a huge pill to swallow.  If I could hang on just a while longer. If I could make it through a day and be productive at home. If I could just be normal...his dream of owning a restaurant would be reality.  Instead I've failed at helping him. My fault or not.  His dream comes to an end.

I Want

I want my normal back.  I want to be able to not have 5000 things to do.  I want the energy to catch up on everything. Most moms feel this way.  Like there aren't enough hours in the day.  I have hours but not the energy to keep going.  I break after every hour.  Not even consciously anymore.  I just do it cause it feels like I should.  If I don't I will pay for it tomorrow or the next day.  I want to be productive.  I want to be the person who gets it all done.  I wanted to make pies, cut rhubarb, do laundry, and vacuum the living room this afternoon. What I actually did was, start laundry, cook bought pizza and load the dishwasher.  Yay me.

How Am I?

I was asked today how I was doing. I never really know how to answer that question, especially after a relapse. I'm doing well? I'm good compared to how I was? I'm feeling better now but not all the way better? Do I delve into details of my lingering issues?  The fact of the matter is I feel better than I did a month ago.  Much better. I am out of my relapse but not fully back to how it was before it started again.  I had an MRI done and I had one lesion on my spine that was larger than before, however it was no longer "active". That was the cause of ALL the drama!  Sometimes it's hard to wrap my brain around it.  How one tiny problem can cause such distress on the body.

There are lingering problems, mostly with numbness in my hands, but for the most part I feel good.  Good for what I'm used to. I need to give it a few more weeks to see if the feeling will come back, or maybe even longer.  I pray these new meds stop the frequency of my relapses, but the nurse said some people just struggle with getting the MS to settle down.  I hope that's not the case for me although that's the pattern so far.  I want to have years not months in between them. I'm on a second line drug as it is and next is a third line drug.  I honestly didn't know there was such a thing. I thought chemo was for cancer patients, but apparently if you arent responsive to the MS drugs that's the third route. So I pray I will be "fine" for at least one year and then I'll know these drugs are working.

If you're reading this please go to www.mswalks.ca and search my name to donate. Donate what you spend on ingredients for a bake sale or for making cupcakes for your kids birthday at school. I'd ask you to dump ice on your head and make a donation but most of you have already done that.

Make Believe

I've talked about it before but the mental game is tough. It's hardest at night or when you want to do something and feel like garbage. I feel like I'm constantly putting on a show. Like a select few truly get it. The issues I've been facing have been going on for over 2 months now. I thought they were getting a bit better only to have it regress almost back to the start. Ever watch the movie Men of Honour with Cuba Gooding Jr.?  He's in this deep sea diver suit and has to walk in it and every step is an effort. He fumbles to put stuff together underwater wearing the gloves and it's cold and things don't work properly. I know that's a bit extreme but that's sort of what it feels like when it regresses this bad. I have a hard time giving change out of the til, walking around, sitting is very uncomfortable because it's tight around the ribs. Never mind just the fact that it's extremely annoying to have sensory issues. When it's like this everything is work.  Everything feels like a workout. I thought I was on the mend for about two weeks. Thought it was just sensory issues to heal in the upper half but now it's all back.

I started my new medication Gilenya yesterday. Stayed at the hospital all day while they monitor your heart. Everything went very well. At the end I spoke with my doctor as at my last follow up a couple weeks ago I was told that the upper half numbness may or may not go away, but that's all it was. Only slight tightness and no heaviness.  I was walking much better. I could function.  Anyways he was aware last week that it was regressing and when I spoke to him again as it's almost back to the start at this point, he told me I needed another MRI.  This is the only way to tell if I have active lesions.  If I do he will "hammer me with steroids" because the longer this goes on the more damage it does.  The problem...wait time.  He will see if he can get me in in the next 2-4 weeks. Average wait time 13.5 weeks so that is expedited. But then another week for results and another to actually get started and finished the meds....total 4-6 weeks. And then at least 2 weeks to START working.  The whole thought is tiring.

Maybe it will improve on its own by then but they say that relapses last 6-8 weeks and this is defiantly past that. I wish I could write nice optimistic blogs right now.  Be an inspiration and one of those people who never complained ( do those people even exist?) I guess they do on the outside, but that's the face I put on for most.  When people ask I will tell some what's going on because I think people need to know to understand. I'm not helping advocate for this disease by covering it up.  However I don't let all my frustrations out, I probably overdo it cause I want to be a part of everything still and that helps my mental health. But many days, especially through rough spots it's a face I put on. It's all just make believe.

My Kids

Sometimes the hardest thing is trying to protect your kids without sheltering them from this disease. I want them to learn about it and know what's going on. To have concern but not to costume them with worry. Each child of mine is different and each one deals with it in their own way. Age plays a factor as well as personality. 

My oldest...well he's old enough to have Facebook and read this. I'm not sure if he does. He's not a talker about his feelings. I know he's concerned when he writes "I love you" in a text or gives me a hug goodbye. He's not an affectionate kid so the little things count. (If you are reading this I'm not trying to embarrass you). 

My second child is the thinker. He overthinks things at times and everything is factual. He is making a website for a school project to sell some of his crafts for the MS walk. It's not something we have talked about its just something he thought of on his own. To him it's just a new part of life. Period.  He doesn't think twice about what it entails. It is what it is and he's aware without making a big deal about it. This morning I told my youngest that I couldn't walk great so I asked him to go downstairs and wake his brothers up for school. My middle guy overheard me and came upstairs and asked why I couldn't walk. I explained that I could. It was just a bit difficult. Just like yesterday I explained. "Oh ok" is his response. Factual.

My youngest on the other hand is a bit oblivious. "What's wrong with you?"  I told him it's the MS and it make me numb. Like going to the dentist I explained. He grabs his cheek and asks " like when it goes blah". Ya like that I said. Don't worry I said.  I will get some medicine after we come back from your tournament and it will help me feel better. That's all he needed to hear because he's a worrier. He is a mommas boy and is very literal. I know him well enough that I can give him information but he needs the reassurance as well. 

I didn't feel so brave last night. I prayed. Prayed that it would all get better. That the feeling would all come back. Because that's just it.  With MS it might not. Some numbness may linger which is why I really need to get started on the new medicine and pray it works. 

Another Valley

I haven't written in over 2 months. I'm not much of a writer. The last while has been up and down. I had a small relapse in November and went on steroids immediately. I also stopped taking Rebif as it was not working.  Once I stopped it was amazing how much better I felt! The medicine drags you down Sooo much. In that time I had to decide on a new drug. I chose Gylenia. It's an oral med (both choices were) and helps reduce relapses by 64% in comparison to 30% of Those taken by injection.  It's complicated to get on but once you do there's little to none day to day side effects. It does have secondary problems but if you are healthy these shouldn't pose a problem.

Right now I'm completing all of the tests to go on it. I have relapsed again and the numbness drives me slightly crazy :). I am still functional though but I can feel it in the fingertips again which is my concern. I don't want to lose my strength in my hands again. That started in November which is why I went on steroids ASAP. I can't function if I can't use them properly. I'm going to wait and see as I was just on steroids in November and don't want to go back on them if I don't have to. The feeling still hadn't come back completely from my last issues so I guess that is always the bigger concern. How much will I regain?  Hard to say but I'm very anxious to start the new medication. This is kind of the final option for meds to work so I'm praying they do but we won't know for another year.  I suppose I could try the other oral med but the side effects sound nasty.

Anyways. That's the gist of it. Just one more valley and another mountain to climb.

A Little Lecture 😉

It's been two years. I hear support from the ones who are close to me. Even from some who are more like aquaintences. But to hear when people question why and how and what you are doing... is tough. And it's not to me but to others. I honestly think gossip is the toughest thing to swallow. So please consider your words before you speak. And be careful little ears what you hear. Being on the receiving end is supporting it just the same. That's it. Short and sweet and to the point. Lecture over. Thanks for listening. 😉

I still matter

I'm tired. Tired of fighting for every bit of help.  I had my MRI almost 2 months ago. I've been having issues, some of which have dissipated in the last 4 weeks, some that have gotten worse. I've called the clinic. Spoke to the nurses. They've left notes for the doctor. But 2 months later I still don't know the results. I still am not getting any help for the upper body numbness, tingling, and itchy sensation.  In a weird way I'm thankful it's completely numb now so it doesn't hurt and itch. But why should I have to be grateful for that?  I don't know if the meds are working because there is no report yet.  I don't know who to blame.  A doctor with over 700 patients is definitely overloaded. But I still matter. So who is here to help me?

15 years from now

It's hard sometimes to not think about the future. I look at my symptoms compared to what they were two years ago. I see how much more frequent things are and how much faster they occur.  It's hard to not get discouraged and think about where things be at 10 or 15 years from now.  What will it be like when I'm 50?  (That's 17 if you want to do the math)

There has been an ALS ice bucket challenge and I think about the awareness it is bringing. 400% increase in donations!  That's awesome and amazing. It's a scary disease as it hits hard and fast. What I wish is that MS has the same awareness brought to it. There are many with progressive MS and 65% of people with Relapsing remitting MS will develop SPMS (secondary progressive MS) within 15 years. This is when your symptoms or relapses never go away completely and the conditions continually get worse. It sometimes feels as though the odds aren't all that great.

In the last couple of months I've noticed that I'm losing feeling in my feet. It's not returning. And my face on the left side usually has slight numbness on a regular basis on and off throughout the day. It's not major things but it's slow and sometimes easy to forget where I was a few months ago.  I heard one person say that they love the MS walk but the one bad thing is that they notice how different it is for them every year. They see the decrease in capabilities. I think that's a good way to put it. Sometimes I forget what normal feel likes cause I'm always adjusting to a new normal.  In a sad way this blog will help me look back and remember. I hope 15 years from now I can look back and see not much difference but I'll be honest...its tough to think like that. Maybe just maybe in 15 years thee will be a way to fix me.

Better than expected

I'm almost too tired to blog but it's been a while so I'll keep it short. Just wanted to say that I'm very thankful for the staff we have. I've been able to trade off with Shawn and supervise for the most part. They've caught on really fast and so far are very reliable.  I feel like this has turned out better than I could have imagined. I was worried I was going to be there way more and be exhausted for the first while but it's been the opposite. Even if I'm there I just watch and help the odd time. It's very awesome to see how this has turned out. Shawn is back to work in a few days but that's ok. I'm Sooo happy with our staff so far!  And so grateful for my mom who's held down the fort here the past 2 weeks:)

Having said that it feels like the summer has flown by! But we are taking the long weekend to go away and spend some quality time as a family before school starts. Only 3 weeks til then!

Don't Be A Stranger

I hate when I can't sleep. I slept for about 2 hours. Woke up. Now it's been an hour and I can't get to sleep again. Right now is not the time for insomnia!  

Our cafe is opening soon and I feel like I'm on the verge of burnout. There is so much going on right now and even though I'm doing only a fraction of what Shawn is, I feel like I can barely keep up. Don't even begin to ask me when the last time I cooked a meal or had time to clean. There's always time I guess but not the energy. Even if I go help out for half a day I'm shot.  Having said that...

I can't wait until we're open!  I'm very excited and nervous. I'm not sure what this will look like for me but I'm excited to be out of the house a bit and I'm sure you'll see me sitting with a latte in hand quite a bit. So stop in to visit and don't be a stranger. If I'm not in the main area feel free to peek your head around the corner into the office. Lol. At least for the first few weeks while we attempt to figure this out. Thankfully Shawn has holidays to help get this off the ground and my mom is coming to help hold down the fort here. We might just get a home cooked meal yet!!  

Well it's 3:20 now so I'm going to attempt some sleep. Our first order comes in tomorrow and I get to play some more with the drink machines. ;). 

Maybe one day

I think I need to live in Northern New Zealand. Where the average temperature is around 20 degrees. I think the coldest is 7 degrees and the hottest is 29. Lol. It's tough to be outside. I don't hang out in the heat. It's hard to work in the heat. I need air conditioning and coolness!!  It zaps me. Just like that. Almost with a snap of the fingers the life drains out of me. If I go in a hot tub or have a hot pack on everything goes numb. And not just slightly but entirely!  Thank goodness the feeling comes back!  I hesitate to say bring on winter because other than hockey I hate being frozen too. Too bad it can't be fall all the time. But honestly I'm sick of summer already. The only good thing is I don't have to bundle up. I could handle an ocean though. Where the breeze blows and I can just relax. I've never gone but maybe one day. :).  Maybe one day I'll live in New Zealand. Maybe one day there will be a cure and I can stop dreaming about it.

Love the Broken

Chronic degenerative neurological disorder. Now that's a mouthful! But it's what rolled off my neurologists tongue at my last appointment. It's wonderful to have someone who gets it. It's also a slap in the face to hear it. Appointments are difficult mentally. They are check ups to see how bad you are doing, not to see how good you are. To make sure you are mentally stable as well.  Don't worry I passed that part! Lol They look to see how much you've deteriorated, which is backwards of a regular checkup. Usually if you are sick you go to see if you're better. If your leg is broken you go back to see if it's healed. They aren't as bad as MRI's though. Because those are "the proof in the pudding" (no idea how that saying originated!)  I saw my MRI for the first time at this appointment. Again....it's like a punch in the stomach. Just one more thing to make it all real, but there was an upside. It looked better than I expected. I had envisioned this to be riddled with white spots. But it was quite the opposite. Just a few here and there. Which makes you wonder how something that small can cause that much trouble?  Kind of like a two year old!  So tiny yet can be a terror at times. :).

Even those these days can be rough, I can say that overall I'm happy.  I don't dwell on it as much. Don't get me wrong I still have moments but they are just that...moments. Not on average a long extended period of time. I don't always think about what I can't do. Quite the opposite actually, I tend to think I'm superwoman still. Which can be problematic. But I HATE absolutely HATE being TOLD that I can't do something. I need to figure that out for myself. Call it stubbornness or pride but I need to see it for myself. I can joke about my slurred speech, balance, or my handwriting now. It doesn't bother me. It's who I am. And at times it is funny! Sometimes not exactly funny, more awkward but that's okay. It's okay if you ask to help me write something, or carry something. It's been a humbling thing for me but if this is degenerative and chronic then this is here to stay and it's gonna get worse so the faster I accept my life the easier it will be. The happier I will be. I can't change it. My family can't. My friends can't. So accept it, embrace it and walk along side of it. That "it" being me. I'm going to do the best I can. And it's okay if I need your help.

What does that look like?
Patience. I had to sign a ton of papers at the bank for the new cafe. Not a simple task. Don't ask to look at them cause they all look different. Especially near the end!
Acknowledge. I had someone carry something to my van the other day.  I said "oh I can carry that in my other hand." He said "I know" but decided to help me anyways. To acknowledge that they knew and understood was wow. I was actually surprised when he said he knew.  Thank you Dwight:)
Listen and Support. I have a few friends who get it. Who don't offer all of their opinions but are just there for me. And they aren't necessarily people I see every day or even every week or month. They are easy to pick out. They are even the acquaintances who ask how it's going. Who sincerely want to know and listen.  

There are three parts. The first was patience. The patience to read and hear about what I am going through. So if you made it through the first paragraph without rolling your eyes and thinking (here we go again). Congratulations. Lol To understand what is going on is important. The second was about acknowledging and accepting the fact. Even to joke about it. The third was to support. Whether it was by volunteering yourself in the MS walk this year (by walking or donating), by stopping me in the mall and asking me how it's going, or by being available for me to vent. All 3 are needed in order to really be there for any person who needs you. Love your neighbour as yourself. I needed to learn to love myself again before I could have compassion and love for others. And in that area I have grown tremendously but only because I've had to go through this myself. They say God works through the broken and in this case I was the one broken.

Who's The Boss?

We have been renovating our coffee shop. Well actually I haven't, just the boys and friends. I've sorted through dishes and kitchen stuff. It's lots of work. Lots of planning. I'm not sure exactly what this will look like for me but I'm excited to be able to be part of something on my own. I can be there when it suits me and when I'm able. I'll have to learn my limits and although the beginning will surely push me to my limits it's a price I'm willing to pay. I love being with people and I love coffee!  I can't hold down a job due to consistency and so being an owner of a small business where I can be in charge of me with only my own expectations to worry about is great. It's something that when I was first diagnosed I would never have thought possible. Sometimes you need to change your plans and have things adapt for you. I won't be able to do this cafe the way I would like....at least not at first. I wish I could everything I want right away but these are some of the things that I will have to learn to accept. I am an owner, not an employee and I can only do what I can to help things run smoothly and to train those who have the same passion. I pray for good reliable staff because that is one thing I will definitely be relying on. I have an amazing family who have encouraged and supported me and I'm not alone in this. Shawn will be a part of it as well. I guess him having 8 years (and a few myself) of McDonald's management skills will come in handy. See McD's is not all bad!!  But our coffee shop will be better. 😉 LOL. 

This Little Light Of Mine

In Grade 12 I remember reading a book for my English class.  I have no idea what it was called.  I can't even remember what it was about.  All I remember was that it was mandatory and everyone was required to write what their opinion was of that particular book, and why you held that opinion. 

Strange as it seems, (seeing that the teacher asked for our opinion) I was sure that this "A" student (in English at least) was going to definitely get a failing grade if I expressed my true thoughts on this book. My thoughts?  Basically that it was stupid and I gave details to support my thinking, one of which was that I thought it unnecessary to go into detail of someone going to the washroom.  Yup that's it.  That's ALL I can remember of that book.  Nothing else.  But I was going to let this teacher know what I thought in hopes that they would see my point of view and never make another kid read such a dumb book!! 

Looking back I don't think that teacher had some great epiphany from reading my expert opinion but I had this need to express it.  Which was probably why I got 100% in a debate for social studies in high school as well as many good grades in the 10th grade where were required to write short essays on various topics.  In case you're wondering I did get an 80% on my book review.

I've grown up that way.  Opinionated, always right, and not only thinking this but feeling the need to express it and better yet, make everyone else around me see my point of view and agree with it! 

These past 4 months especially, I've been growing.  I've bit my tongue. Many times. Because in the end it didn't matter. In the end it wouldn't have made someone change their mind or have some great clarity. It's about turning the focus off of me and my thoughts and considering the thoughts of others.  I have a long way to go, and am far from perfect!  Just ask my husband :)  But I know what it's like to want to have someone just listen.  To not pipe in their expert opinion and to just listen. That's been more helpful to me in this journey than the ones who have all the answers.  It doesn't just apply here, for this particular experience. A softened heart is where it starts.  Our attitudes reflect our actions.  Our actions don't change who we are. It sounds cliché but it's our hearts and attitudes that truly change our character.  In the end having people genuinely care about you and having a gentle spirit is most helpful to people. 

I've always had a soft heart towards hurting people but it was always overshadowed by my opinion of whether or not I saw it as legit. Should they just get over it? Are they their own worst enemies? Could they be doing something to help themselves?  In the end, my opinion doesn't matter, what they are going through and how I can be help does. Because I have Christ in me, I wanna let my light shine.

The Short Stick

I went away this weekend. To get away as a family after our hockey season. But before we left I half jokingly suggested that I not bring my meds. Shawn said ya and that he was thinking the same thing. 

What a weird feeling. To know that I was going to purposely miss a dose. It felt like I was sneaking out of the house past curfew. 

We pulled out of the driveway and down the street I realized that I actually had forgotten to pack them. I told Shawn and we decided not to go back for them. I was feeling guilty, yet relieved at the same time. 

Taking the medicine makes me tired. It makes me function at an even slower rate. I finally feel like myself two days after but by then it's time to take the next dose. So I usually end up with a good afternoon and evening and then start the process again. This weekend I was tired. But I had fun and got through Saturday which was the longest day. We shopped and by supper I was done but I knew that would happen which is why we planned for a movie that night. Also, I got to sleep in on Sunday because checkout wasn't until noon. 

I slept part of the way home and then until noon again today. And now I took the meds again. I told Shawn I don't want to take them. He told me I had to because I don't want to end up crippled. My response was that I'm living that way already. When I'm too tired body wise to accomplish anything. When it takes so much preparation to plan a day. 

I know it's not the same but it makes me angry. For some reason I want to throw in the towel with the meds and just live the best I can. It's like getting the short end of the stick either way. Just one takes longer to get.  Do I want to risk more severe issues in the end to live a better life now?  Or do I live with the limitations now and still get to live?  What if I don't take the meds and I'm no worse off in the end?  Only God knows the answer to that question though. 

The best example I can think of is the cancer patient who doesn't want treatment so they can live the next two years because they just want to live the next 6 months of their life to the fullest. Not with all of these limitations and feeling crappy. I know mine is not to that extreme but the idea feels the same. When do I want to grab the short stick? Now? Or later? 

 

Celebrate and Savour

I turned 33 yesterday. Not a huge milestone or anything but still. It made me question what do actually do when we "celebrate"?  Are we celebrating in certain ways?  Do we have traditions or something different that we do?  Why do we grow up and say that you're too old for a birthday party? Are we?  If it's a day to celebrate we should do just that. Celebrate. However that may be.

Oh but wait....every day is a gift and we should live like that's so. But do we?  I read a devotion last night and the lady in there had went to someone's house. This elderly lady never did two things at the same time. She wouldn't sit outside and enjoy the sun and conversation and have her tea and chocolate at the same time. Because she didn't want to overcrowd one experience with another. Maybe that's a bit extreme but the idea is good. How often do I overcrowd my day trying to multitask everything all the while not really be able to enjoy any of it? 

I want to celebrate and savour each day that I have. Take the time to enjoy the good moments even if the day has only one. What are the chances I'll miss out on it if I overcrowd it with everything else?  Probably pretty good. And how often in the process do I miss out on the good things God is telling me because I've overcrowded my day?  

I know this isn't directly talking about my MS but in a round about way it is. There are many days when it doesn't feel like it's a celebrating kind of day. But I shouldn't need an excuse like a birthday. I should be looking for the good and relishing those moments in the midst of the bad. Not always an easy task but I think I need I slow down. Maybe now more so than before. 

Basic life

I think I'm just going to start blogging about my life in general.  Letting you know what happened but still touching on how my ms is or isn't affecting me. The emotional toil it has on me that day. Etc. 

Like today. I got a call at midnight to go to a friends house because her water had broke. I was there until 6am and then fell asleep for a short bit. Got the kids up for school and went back to bed at 12:30. I forgot I had to meet someone at 2:30 so when I received the phone call that I wasn't there, I got up to go. Then off to the rink for the rest of evening. 

How will that affect me tomorrow?  Probably not great but we will see. I put in a full day on Saturday. Was dead tired Sunday but kept going and then Monday I didn't get out of bed until 1:30pm. I barely got up Tuesday too. 

So I know my household is suffering with me sleeping in the afternoon and struggling to get up but my evenings are very busy at the rink. Come the end of March things should return to normal but I'm running out of steam and my personal life can feel it.  I thank my kids for not complaining too much and because it feels like I hardly see them lately but they've been very patient. I really am blessed. I promise I'll be a better mom next month :).