Tuesday, December 18, 2012

I am horrible at this blogging thing.

Or maybe I'm just crazy busy?  Yeah, we'll go with that.  We'll stick with me being an overachiever and not being horrible at something.

I did go to the neurologist last month.  She was not thrilled with the amount of side effects that I was having after 7 weeks of being on the full dose of Betaseron, so she pulled me off of it.  So now I am doing research what to start next.  She wants me to try Gilenya, but that would be at the bottom of my list.  She also told me to research Aubagio and BG-12.  She said the only other injectable that she would consider would be Copaxone, but that with my nasty injection site reactions it is a huge strike against me.  With it being a different drug it might be okay, but I still have injection site reactions (ISR) from the Betaseron, so I wouldn't even be able to start until those go away- if they do.  You can't give a shot into an ISR because it causes more pain, can make it take longer to heal and can cause more irreparable damage to the underlying tissue.  Fun times.

I go back on the 22nd of January to let her know what I have decided.  I am leaning heavily toward the BG-12 (or as I call it because I continuously forget the "G"- the B12 Bomber).  The problem with that is that it isn't actually on the market yet.  Possibly in March it will be out, but the FDA has already pushed it back for more testing.  Not necessarily a bad thing when you look at the side effects that the other pills have.  However, when you are waiting on it to come out...  Another problem is- I have no clue what the copay is going to be on the B12 Bomber.  I know what the other 3 are.  I know what the new one should be as long as it is covered like the rest of the specialty drugs and barring any shenanigans. Shenanigans could throw a wrench into plans when you think it is going to go one way one way and then it ends up being a lot more than that.  Yeah, you are talking about health, but finances cause stress, and stress causes symptoms to flair.  Vicious cycle there...

I have been super, super busy lately.  Seems like I am always saying that, but it's the truth, just more so the last couple months of the year.  November and December not only have the holidays, but 2 out of 3 of my girls birthdays.  Plus, we just started doing online school for my youngest 2 that are still in elementary school. Lots of craziness and change-ups with the schedules here.

I will write more about that in a different post.

If time gets away from me...again...I hope everyone had and has a happy holiday season.  No matter what holidays they celebrate.


Monday, November 26, 2012

Good thoughts

An old friend called today asking about my journey so far.  Asking how my symptoms started, and how I went about getting diagnosed.  Turns out that she is going starting the process of finding out if she has MS or possibly one of the other conditions that can mimic MS and is in the wait and go crazy phase.  I was happy to help in any way I could, though it wasn't really a lot. Just a bunch of "this is how it started", "this is what my dr. did", but I hope some of what I said made her feel like what she is feeling right now is normal and isn't   crazy.  I would like to ask you all to keep her in your thoughts and prayers.  Send her good vibes and wishes, whatever it is you believe in, because she could use it right now while she is starting the overwhelming process of just finding out WHAT is going on.

I have a 3 month check-up tomorrow.  I have been on a full dose of Betaseron for 7 weeks. It hasn't been easy and the side effects aren't letting up a whole lot.  I am eager to speak to the doctor about that and the increase in some of the symptoms that I have been having.  So if you could end me some good thoughts, too, I would appreciate it.

Thursday, November 22, 2012

Thankful.

Happy Thanksgiving to everyone. I hope everyone did whatever it is that they wanted today, whether that is shopping, watching football, working overtime for extra money or eating food until you never want to eat again.  I hope you got to at least spend time with people that you care about.  We had dinner with our dear friend, Katie, and her family.  And I can't thank them enough for having us.

I have been seeing posts all over Facebook and other social media sites where people post each day during the month of November something that they are thankful for. "30 Days for Thanks."  I think it sounds like a great idea in theory, but not something that I can keep up with. Every other day would probably be, "I'm thankful it is not shot day."  You guys would start defriending me and threatening to shove needles in my eyes.

There are some things that I am thankful for, though.  I want to take this opportunity to spout my 30 days of thanks into one post...The last year has given me a lot to be thankful for. These things I would be thankful for anyway, just more so now.


  • I am thankful for my babies.  I have the three most amazing beautiful girls in the world.  They are smart and funny and helpful.  They have driven me crazy at times, but have been more helpful lately and a lot more loving and quick with a joke or hug if they think I need it (even if I don't and am just trying to remember what I was doing).  
  • I am thankful for my family.  My mom and dad and siblings.  Even from 3000 miles away, I know they love me. Goofy texts and messages that make me laugh and calls just to check on me.  My mom hopped on plane at the end of August and surprised me and my dad bought the plane ticket.  Just because she needed to see me.  
  • I am thankful for my friends.  I have some of the greatest friends a girl could ask for.  Some near and some far.  They have helped out however they could without thinking twice. They have kept me sane and slapped me around when I needed it, and just let me vent if I needed that. 
  •  I am thankful everyday that I get up and can walk and can see.  I have pain in my legs, and have fuzzy vision some days, but as long as I CAN see and do not need help getting around, then I chalk it up as a win for the most part.  THOSE things would come with a much larger learning curves. 
  •  Most of all, I am thankful for my husband, Chad.  I love him and he is my soulmate.  We might not be perfect, but we are perfect for each other and I do not know what I would have done without him the past year.  He has taken care of me in so many ways and a lot of men would have run the other way when the going got tough.  I don't thank him nearly enough, and have been seriously cranky lately, but I am so thankful for him and love him with all my heart.  I hope he has some inkling of how much he means to me.  


So, while I may not do 30 days of thanks, I mean mine with all of my heart.

Friday, November 16, 2012

Sleeeeeeep...Updated!

Not that I know what that is.  I am running on a severe deficit.  This time of year is always super busy for me.  Combine school schedules with Halloween, then Hannah's birthday, then Thanksgiving, then Courtney's birthday, then Christmas and throw in a couple of vendor events...October through December are the craziest, most exhausting months of the year for me.

My oldest baby, Hannah, turned the ripe old age of 12 last weekend.  Time goes way too fast.  I remember vividly that newborn smell and how fuzzy her hair was.  Other than a couple of months of colic, she was the most even tempered baby.  Then she never threw a fit when she was a toddler.  She was honestly the most well-behaved child.  She threw her first fit when she was FIVE and it was because she was tired and I wouldn't let her lay down and take a nap, not because she was getting candy or tv or a toy...a NAP.  I remember it like it was yesterday because I was shocked and ended up laughing at her and stopped my shopping to go home and let her take a nap because I thought if she was acting in a way she had never acted before because she wanted a NAP, then she must REALLY need one.

 Now she is this amazing, smart, beautiful young lady who is brilliant-straight, near perfect 100's in all of her classes and freakishly artistic.  She has taught herself to play the guitar and sew and knit and crochet...She draws and makes jewelry.  She doesn't even need me, she is self-sustainable.  Next I am going to see if I can get her to make bracelets while knitting with her toes, playing the guitar with her elbows and drawing while holding the pencil between her teeth.  THAT would be phenomenal.  She might be able to get her own show on TLC.  I might need to change her name to something more catchy, more marketable.  I'm gonna have to think on that.  Until I come up with something, I am just going to refer to her as Hannah Boo Boo.

Hannah Boo Boo wanted to have a sleepover and go to the EMP museum and eat at Beth's Cafe for her birthday.  The other two munchkins went off with a friend the morning after the sleepover and we made the trek into the Emerald City.  HBB and her friends M & K saw the sites of the museum, which for any music and/or science fiction geek are a must if you are in Seattle.  I love looking at stuff that was actually used by anybody famous in an actual movie or tv show or on stage during a concert.  It makes it even better if it was somebody or a movie or show that I really like.  There was a big Nirvana exhibit which we had seen before but could still take our time enjoying, and numerous exhibits including a sci-fi exhibit that were new.  Hannah had her picture taken with a Dalek from Doctor Who.  That made her happy.  After leaving there, we went over to Beth's, where Hannah proceeded to order a 6 egg omelet with ham and cheese served on hash browns with a blueberry muffin.  She ate every bite of the muffin, all of the omelet and started on the hash browns.  I can only assume that turning 12 worked up her appetite.  All in all it was a successful and low-key birthday.  I am pretty sure the girls did no drugs during their sleepover, the alcohol cabinet was not tampered with and they were in bed by 1:00.  When I went to bed, they were playing Scrabble, yes Scrabble.  And they were up by 8:00 to eat and get ready to leave for Seattle.  Yeah, I've got myself good kids.  *knockonwood*


Obligatory picture of my beautiful  Hannah Boo Boo.
  UPDATE:  So, I got a text from my baby sister yesterday.  "Hey!  I thought I was your oldest baby....:/"  Evidently she thinks that because I was 15 when she was born, people repeatedly ask if I am her mom and I toted her around like she was mine a lot of the time, that she did actually burst forth from my loins and I was a teenage mom.  I kid, that is just how close we are.  I am more like a second mom than a sister in a lot of ways.  And I love you, APC!  Though, imagine if I were actually her mom!  And I had given her to MY MOM AND DAD to raise. Now THAT is just the type of show that TLC would go for, Forget Hannah Boo Boo!  TLC- Trainwreck Loving Channel! A is in college now and doing amazing and I am SO proud of her.  The show might get in the way of her studies.  We might want to wait to approach the network until she's done. 

*No, APC is not my daughter that I gave to my mom and dad to raise.  She really is my sister.   I wanted to stick with the TLC theme.  Ali Boo Boo has a certain ring to it, don't you think?  Wasn't that  a cartoon?  

Saturday, October 27, 2012

Spasticity is fun to say...

Go ahead, say it with me, "Spasticity!"  Wasn't that fun?  It doesn't feel too great, though.  Spasticity for those of you not in the know, is basically when a muscle spasms, stiffens or otherwise gets tight or feels as if it can't stretch.  Up until this past week, I had a few of random incidents of spasticity.  Nothing to write home about, just a muscle spasm that would last for a few minutes, a couple of times in my upper arm, a couple of times in my thigh.  This past week, though, has been like a little spastic party all up in my thighs.  While I can tell that the muscles are having spasms, the pain isn't like a typical spasm.  It reminds me of the sciatic nerve pain that I had when I was pregnant, but in the fronts of my thighs.  And the pain hits at very inopportune times-like when I am walking down the stairs with a basket of laundry.

So, I have been dealing with that for the past week.  I think I might be having a pseudo-exacerbation.  Basically I have been overdoing it the past few weeks so I am having some symptoms of an exacerbation, without an actual full-on exacerbation happening.  The last post detailed some of what has been going on this month, and it hasn't slowed down the past week.  Too much stress and activity with not enough rest can bring symptoms on in many MS patients.  The fatigue has hit the past week, also.  I really want to climb in bed and stay there for a month.

We did do some painting today.  We bought this house and it the model house, so it had a fancy "accent wall" of a different color.  Well the wall was a beige color that I haven't liked since we moved in two years ago.  It was the longest wall in the house as we have a eat-in kitchen/family room that goes the whole length of the house.  So it had cabinets with a tile backdrop,  and two windows and a set of sliding doors with no frame that we had to tape off.  Sooooooo tedious.  However, it looks fantastic.  We picked a dark moss green.  Chad says he looks at the wall and wants guacamole. I am just happy to have color on the wall!

The Betaseron is still kicking my butt.  It has been wrecking my stomach since I moved up to the full 1.0 almost 3 weeks ago.  That's on top of the headaches it was already giving me.  The needles are the smallest of all the MS meds, but for some reason the few doses have actually hurt.  Not the medicine burning type hurt, but like the area feels sore the next few days like after you get a flu shot type hurt. Not sure what is going on there.  And I am super splotchy.  It's very attractive. Pink splotches on my arms and belly. My thighs and butt (though the injections really go into my lovehandles, so butt is kind of a misnomer in this case) don't look too bad. Any splotches clear up in couple of days or so...My arms and belly those splotches last for weeks.  I am running out of injection area on a couple of those spots. :/  Those are my least favorite anyways, so maybe that's not such a bad thing. :)  Hopefully it starts to level off and I start getting used to it.

I hope everyone has an enjoyable Sunday.  For all of my friends and family on the East Coast, stay safe, dry and don't blow away!

Thursday, October 18, 2012

I'm alive...

The past two weeks have been so long.  Crazy long.  Insanely long. I've had numerous people call or send me texts or messages making sure that I am still alive because I seemed to have disappeared, but let me  assure everyone that I am fine.  It has just been a seriously looooong couple of weeks.

Quick rundown.  Chad was out of town for the first week of October, which means no sleep for me.  I don't sleep when he is not here.  Every little thing wakes me up and someone always ends up getting sick.  This time it was me.  I ended up with a sinus infection.

I also upped my Betaseron to the maintenance dose.  I'm not feeling great.  My stomach is upset the day after my shot.  I am hoping it will taper off.  It has been going on for 2 weeks, only since upping to the maintenance dose...  Before I just had a headache the day after increasing for the first couple of shots and was super tired.  My stomach huuuuurts, though.  Maybe I will lose a couple of pounds since I am barely eating anything on those days?  Look at the positive side of things!

My oldest child also fell at school and hurt her knee.  She is doing much better than she was, but we ended up at the walk-in clinic getting x-rays taken because her knee was huge and purple and she could barely move or walk.  She tripped over an electrical cord that was left in the doorway of the classroom.  Yeah, don't even get me started on how pissed I am about that, for SO many different reasons.

My middle child had to be sleep deprived Sunday night so we could go in for an EEG Monday morning.  Doctors think there is a chance that she may be having absence seizures.  She was tired and miserable well before the time she was supposed to be "allowed" to go to bed Sunday night.  So pleasant.  We haven't gotten results yet.

It has seriously been a "when it rain, it pours" type of month so far.  Tuesday was the first night that I have slept all night other than to get up to go to the bathroom, either somebody is waking up because they are having a bad dream or the neighbors are making noise.  I may or may not have been a little extra grouchy lately because of the combination lack of sleep/hurty tummy.  Hurty tummy is the technical term.

So, I'm alive, just kind of dragging along lately...  I promise to actually post something of substance soon.

Wednesday, October 3, 2012

Coconut Oil and Thanks...

Is not something that I would recommend on an empty stomach.  Not only was it slightly greasy, but having the oil sit in my stomach upset my stomach to the point I can't even look at the jar of coconut oil.  If anyone has used coconut oil and has some ideas on how to consume it, share, please!  Pretty please?

I want to say that I have gotten quite a bit of positive feedback.  People have been sending messages on facebook and e-mail.  I am happy that I can share what is going on and have it be helpful to others.  It is helpful to me to just have someplace to get it all out.  I wasn't doing this for attention, but am glad that people are reaching out to tell me that they didn't understand and now they have a better understanding of what is going on.  It is hard for me to verbalize a lot of times, but for some reason I can still get the words down on "paper".  Feel free to send me ideas and feedback. In the comments, on FB, e-mail, whatever you choose.

Thanks for all the kind words I have gotten thus far.  I will continue to throw it all out there and hope I hope embarrass myself too bad!


Tuesday, October 2, 2012

Symptoms

About a week ago, a great graphic popped up on Facebook from Multiple Sclerosis Information.  They said share and share with anyone who will listen to help spread awareness about this often misunderstood disease.  I am sharing that graphic here, and talking about my symptoms, which I haven't done a whole lot of up to this point.

Some people will have a few of these symptoms and have them all of the time.  They will get worse with stress, certain weather conditions or if they are otherwise ill.  Some people will only have one symptom and have it for a week and that will be enough to get a diagnosis.  Every person who is diagnosed with this disease is different and should be treated as an individual.  There are also what are known as "exacerbations"  or 'flair-ups".  More on that in another post...


Most people are usually taken by surprise when they find out that I have MS- because I don't "look sick".  Ummm, thanks?  Then they always ask what my symptoms are.  Even people that I don't really know.  That takes me off guard.  Having had 3 kids, it reminds me kind of like those times a stranger would put their hands on my pregnant belly and ask how much longer.  Only this time I wonder if they really want to know how many times my bladder didn't work quite how it was supposed to.  So, I typically stick to the muscle symptoms.  And the memory loss.  And the tingling that has turned into pain.

My legs... It started off as a weird kind of tingling, almost like pins and needles-but not quite.  It was last winter, though, so I thought I just couldn't warm up.  No big deal.

Then my memory went.  Stupid random stuff that I know.  Song lyrics, movie quotes, random trivia.  But also important stuff.  My address and phone number.  My best friend's phone number. Stuff I use every day.

Then I started losing focus.  Brain fog... I would forget stuff going from one room to the next.  Or going from the stove to the refrigerator to get an ingredient for dinner and I would have to go back to the stove and run down the whole list again.  I also started not being able to read if anything else was going on in the room.  I couldn't carry on a conversation with someone because I would lose my train of thought in the middle of a sentence or start combining the end of one word with the beginning of the next word. It got to the point where I would not be able to think of a word that I wanted to use or what something was.  I know what I am talking about, but can't think of what that thing is.  I can describe it to you, just can't tell you the name of it.  Ugh.  I hated talking to people, especially on the phone!

Possibly worse of all was when the fatigue hit.  Worse in the sense that it is not taken seriously.  It hit, and it hit hard for over a month.  People would tell me, "Oh, I know what you mean.  I was so tired last night!"  And I would want to tell them that I was tired, too- after I was in labor for 20 hours with my first child!  This isn't tired.  This is different.  This is up and going after a full night's sleep and  then 2 hours after getting up, your whole body hurts and you can't keep your eyes open even if you are standing on your feet.  It is like you ran head first into a wall and you can't figure out what you did to make you want to go climb in bed and sleep for a year.  You didn't stay up late last night, you didn't party this weekend, it's not a rough week at work...you just got up and had a cup of coffee and took the kids to school.

Luckily, my diagnosis was relatively fast.  There is data that suggests the average MS patient takes 4-5 years to get diagnosed.  I took 8 months.  It felt like a long 8 months, but at least I have a plan of attack.  I know what is wrong with me and can look for ways to adjust my life to make it easier.  There is no cure, but I can work with something if I know what I'm working with.

If you know someone with MS, know that stress can make their symptoms worse.  Extreme temperatures can make them worse, also.  Evidently, cold temperatures can affect some people, too.  I am finding that I can't warm up easily so I am cold and in pain and then all of the sudden I will be too hot.  Lots of fun.  And some patients with MS might have a handicap parking pass but "look normal".  Don't make any assumptions.  They may need it because too much walking will have them in a wheelchair later on or maybe the next day.  They are not lazy and they are not faking it. That is how this disease works with some people.

All of my symptoms are the same except my legs which are now in pain instead of tingling and my memory has actually gotten better as far as number-type items.   I'm not going to say it isn't a hard adjustment.  I'm not going to say there aren't some days I want to cry and ask, "Why me?"  But that takes too much energy.  I need that energy to stay positive for my girls.  What kind of example am I going to set for them if they see their mother not fighting this disease?  I stay positive for my husband.  I plan on driving him crazy for another 55 years, at least, because I've had so much fun the last 14.  So I fight. I'm an MS Warrior.




Monday, October 1, 2012

The Post in Which I Get Assaulted and Oily...or... Waxy?

After the last post, you probably think that I was assaulted at the dentist's office, but I will preface this by saying that I left there unharmed.  There were also no police involved in the writing of this post.  There, now I've done.  I've lost half of my 5 followers.  2.5 of you were only going to stick around because you thought this was a real crime drama.  Sickos.

The weekend was not nearly as restful as I said it was going to be.  The munchkins that live with me decided to go for a room swap and it happens to benefit the husband and I. So I spent yesterday moving furniture and directing traffic while they moved belongings.  Luckily, they exchanged some furniture, also.  It got my eldest out of the largest room which also housed the guest bed.  This room is over the 3-car garage, to give you an idea of the size of it, and she thought she was the queen of the entire thing.  The original plan of sectioning of part of it didn't work.  At all.  Slowly, Hannah's belonging would spread like mold.  "Don't put ANYTHING on that bed!" is what I would tell her.  She would reply, "Okay, mom, I won't," with a complete, utter look of honesty.  HAHAHAHAH!  She had me fooled!  Being the pre-teen girl that she is, it is often that I would open her door and see a pile of clean clothes on the guest bed.  *eyetwitch*  Then I would walk closer and notice bottles of fingernail polish!  ARGH!  This was just the icing on the cake! So, yeah, if she wants the smaller space and the younger two want to share that room, by all means.  It actually means that there will be one room with the guest bedroom closed off, and I know that seems silly to some people.  But Mia and Courtney want to share a room for some reason.  They end up in each other's room every night, anyway, so this just cuts out one step, and I have one less room to keep clean.  Win-Win!  So, the furniture is moved, just have to finish up with the little stuff, closet fillings, getting things just right, etc.  That is what my Sunday involved.  I got to a good stopping point, started dinner.  Chad lit the grill and was sitting on the patio.  I went and stood in the yard to talk to him and didn't have shoes on and stepped on something. Blinding, searing pain. Much cussing and jumping around like a fool ensued.   I only saw it for a second though and only to lift my foot up and see that something was stinging me and then I put my foot back down and rubbed it against the grass.  Some evil, no-good, stinging insect.  Didn't have any yellow that I could see and was not long, more round.  Possibly hornet? HOLY PAIN!  We are at 20 hours, and my foot still hurts.  Not as bad as it did yesterday, but hurts to walk.  Last night, though I thought for sure my foot was burning off.  I just hope it wasn't one of those zombie bees or I know what I'm going to be for Halloween.

I did start off my Monday productive.  Ran a few errands after I got H&C off to school, with one specific place in mind as a must.  My best friend told me, months ago, that coconut oil is supposed to be beneficial for memory and brain fog.  Not having actually received a diagnosis of MSat that point, I didn't want to start any supplements, or do anything that could change my symptoms and then not know if it was the symptom changing on its own, or if it is was because of some supplement.  While having my coffee this morning, I was reading about brain fog and someone else mentioned the coconut oil again.  So, off to Trader Joe's I went.  Their coconut oil is organic and was very reasonably priced considering I don't know if it is going to work or if I am going to have to gag it down.  In the jar it looks completely wax-like.  I'm a bit a-skeered.
Hmmm...The thicker it is, the better it works, right?  RIGHT?


There are a huge list of supposed benefits of coconut oil.  Internal and external. So if you are interested, Google is your friend.  I am looking for a specific benefit here and will be thrilled if it works even a little, I won't be "uuuuhhhhh"-ing my way through as many conversations anymore, as endearing as I know that is. The blank look is a favorite of my husband's, I think.  Maybe I should rub some on my zombie bee sting, though?


Saturday, September 29, 2012

Coffee is the Nectar of the Gods.

This is going to start off as a completely frivolous post, it may become something of substance...I make no promises.

Happy National Coffee Day!   I don't know who made this a "holiday,"  but I thank that person with every fiber of my coffee-infused being.  Just kidding.  Kind of.  I did hop out of bed this morning thinking that I had a nationally supported reason to partake of my borderline addiction.  I mean, it is a HOLIDAY, people.   I have given up soda. I used to be a Diet Coke girl after my morning coffee.  I have cut quite a bunch of unhealthy stuff out of my diet, though.  Plus soda tastes really funny with the medications I am on.  The carbonation tastes weird.  So that was an easy cut.  I have upped my coffee intake to 2-3 cups a day, on most days.  And I really can't function before I get that first dose of caffeine.  I sit with my coffee, check my e-mail.  Occasionally I will be fooled into thinking that the caffeine has take hold and reply to something.  So if anyone has ever gotten an early morning e-mail that doesn't make a ton of sense.  It was me jumping the gun!

Unfortunately, this caffeine substance that works for so many people doesn't work as well for me.  It helps get me going in the morning for a bit, but then by noon I am ready for a nap. Any coffee I drink after that point is purely for enjoyment.  And enjoy it, I do!  My favorite right now is a flavored K-Cup by Green Mountain Coffee- Wild Mountain Blueberry.  YUM!  Coffee and blueberries wrapped into one.  It smells like a blueberry muffin.  So I drink my blueberry coffee in the morning and pep up enough to function and get the munchkins off to school, answer e-mails and do some basic work "stuff".

This is my fuel pump.  Her name is Josephine. Yeah, a big cup of Josephine.  Joe was too common.
As far as the weekend goes, I have a dentist appointment today.  Who wants to go to the dentist on a Saturday?  Not this chick!  It is a reschedule, though, so I need to go and get it over with.  I have never had a problem with the dentist before, but the place I go now is kind of violent.  The last cleaning I got, I couldn't eat solid food for almost 4 days.  I scheduled with a different hygienist this time, so hopefully I will not have the same problem.   I also have to pack my hubster up.  He is leaving on Monday for a few days.  I will admit that I am a bit nervous-more so than normal.  I always hate when he goes away on business, I don't sleep, I keep all the lights on at night, etc. But this is the first time since D-Day that he has gone away on business.   He will only be gone for 4 days, so hopefully it will just go by quick with nothing to write home about.  Other than than I am going to rest and watch Doctor Who with a box of tissues later!

I hope everyone else is having a fantastic weekend.  Go enjoy a cup of coffee or some coffee ice cream.  Or both!  Mmmmm!  Coffee ice cream!  I know what I'm having for dessert!  Maybe I will have a pint while watching Doctor Who...Sounds like a plan!

Thursday, September 27, 2012

I think I Hit a WALL...

Yesterday was so damn long. I do not even know how to sugarcoat that.

I said I needed to clean out and organize the den- which is really the playroom.  Well, I got up yesterday and I had my coffee, took a couple of kids to school and tore through the den like a tornado.  I am quite proud of myself. I dumped every bag, bin and box out and went through everything in that room.  The children who live in my house and cause me to question my sanity on a daily basis were feeding hippo food marbles everyplace BUT the Hungry Hungry Hippos to whom they belong.  I think someone was packing for THE BIG ONE because I found a mini-backpack filled with pairs of clean socks and granola bars.  At least when we are walking to higher ground we will have sustenance and comfy feet.

After 4 hours, I had taken a large bin of toys and books upstairs and shoved it into storage for future generations.  I had taken 2 bags of trash out and 2 trash bags full of stuff to Goodwill.  I then still had to come back and reorganize the little that was left.  Luckily, the girls play with just a few items these days.  They are big on games, dress up, crafty stuff and dolls, so everything else is gone.  I also moved the storage shelf onto the main wall and out of the corner.  When it was in the corner, they thought the corner was their trashcan/hamper when they were too busy to leave whatever they were playing.  Then they would leave it, or possibly forget about it.  But the new set-up has no hiding places.  I hope I outsmarted them for a short time.

I went and got a load of laundry done, was feeling successful.  Started a batch of lasagna.  Noticed I was getting a bit fatigued.  Had to switch to a smaller knife so that I could better control it and not cut my fingers, but the peppers and onions were not a pretty dice at all.  I did get my lasagna done, and got one in the freezer.

My husband called on his way home and while I was talking to him and prepping the salad, my 5 year old, Mia, started screaming upstairs.  Off the phone, up the stairs I go...  The child has blood coming out of her mouth.    Not a ton, and it just takes a little to get her to scream like someone is trying to kidnap her, but still, why is her mouth bleeding.  Upon closer review, her 2 front teeth on the bottom are sticking out almost horizontal when they weren't even loose before.  WTF?  Ummmmm, she tried to open a big plastic storage bin WITH HER TEETH.  Leave it to my child. The teeth had to be pulled out. Much screaming ensued.  Many tears.  More from me, afterwards, I think.  My BAAAABEEEEE!  Her widdle baby smile is no longer.  She has a big gap in her teeth...  Ugh.  At this point I could really use a drink, though I skipped it as it was shot night.

I actually dropped my fork during dinner.  It just fell out of my hand.  Completely lost my grasp.  Talk about fatigue.  I have issues with my hand strength, but not that bad.  I don't think wrestling teeth out of a 5 year old's mouth helped with that.  It took me a minute to realize what happened, though.  I sat there staring at it wondering what happened trying to process it.  Something to write in the little symptom notebook.

I have been asleep on my feet today other than making a wreath this morning.  I saw a wreath on Pinterest that was just a mossy wreath, a brown bow, and fake pumpkins all around it.  The very famous company wanted $100 for the dang thing!  I saw it and thought it was a craft project and took it as a template for myself.  I thought it was rather plain and certainly wouldn't spend that much money on it.  I  went to Michael's and bought supplies and made my version.
Not $100 on a famous website, made with shaky hands and a
 hot glue gun.

I am hoping that tomorrow is easier. The girls have an early day and we are going to go get cupcakes with my buddy and her boys.  The moral of this story is rest often and even if you are feeling good, don't overdo it!

Oh, and Mia didn't get the bin open.  I know everyone was dying to know the outcome to that story!

Tuesday, September 25, 2012

Organization

I have never been the most traditionally organized person.  I have always had an attention for detail, had a great memory and could multi-task like a madwoman, but was always a bit cluttered.  You would never see me on an episode of Hoarders, but there are a couple of counters and a few drawers that pile up.  Back in February when I started forgetting my own address and my best friend's phone number, among other random items in everyday use, I realized that something might be more than a little wrong.  That is only one in the laundry list of symptoms, but at the time, it was the most worrisome for me.  I had started to get a bit more organized when I realized things weren't going to get completely better, but now that I know things could get worse, I am in organization mode.  Delegating chores that I wouldn't have 2 months ago, asking for help when I really hate asking for help, lists and charts all over the place. And I'm not taking crap from anybody.  If I tell someone to pick their shoes up, they better put their shoes up!   
The TV is on very little during the day-especially when the girls are home- because the background noise distracts me, so more gets done by everyone now. I just ordered self-laminating sheets and magnetic strips and printed off chore charts so I can put dry-erase charts on the side of the fridge for each girl.    
 I make my hubby's breakfast in the morning, but honestly it got to the point where I was burning stuff and would get back upstairs and not remember if I had turned off the stove, so I decided to start making batches of breakfast burritos.  I do a batch every few weeks and wrap each one and freeze them.  Take one out and stick it in the fridge at night to defrost and in the morning just microwave on medium.  So inexpensive and super easy. One of my children, who shall remain nameless, would pour enough cereal into a big soup bowl for a week and then proceed to to pour about 3 cups of milk into the bowl.  Then promptly eat 1/4 of it.  Ummmmm...Houston, we have a problem.   I bought a bunch of plastic bowls with lids and dish out the girls' cereal at night-the correct serving size.  The bowls go in the pantry and they just pour their milk up to a certain line in the morning.  It has saved a TON of waste.  Plus, nobody is complaining of upset stomachs!  Win-Win!  
 I HAD to go out and buy a pill organizer.  You know what I'm talking about.  One of those things your grandmother has in her kitchen cabinet that has all of her heart and arthritis pills.  Oh, and don't forget the supplements.  Yeah,  I'm in that club, now!  But I couldn't remember for the life of me which pill to take when.  So off to the drug store to get one of the paperweights.  I take pills 4 times a day, so I needed one with 28 slots.  Ugh!  How embarrassing is that?  A couple of the pills you have to take with a full glass of water, so nobody has to worry about whether I am getting enough water during the day.  Looks, I'm even going to show you a picture...Well I am going to try, hopefully I won't make the internet explode.  That's an average of 14 pills a day for all of you who didn't enlarge and count.  Though, I don't have the stinky vitamin in there, because who wants everything else to smell like fish? *gag*  
Nothing in here to get excited about, don't get jittery.
I think I am hitting the den next. I left that up to the girls for the last week. That was a bit of a disaster, though you can't tell just by standing in the doorway.  I went in last night to get the blocks out for the Mia's homework, and there were dirty socks stuffed in the bottom of the Barbie bin... Her answer to, "Why?" "Oh, yeeeeeah...my feet got hot playing, so I stuck them there so I wouldn't forget." Yeah. I think you forgot, kid. Everything is just stuffed into bins.  Trash, blocks, puzzle pieces.  All in one bin...But the floor is picked up!  Kind of like you used to clean your room when you were a kid, shove it all in your closet or under the bed.  It looks good from the doorway, but if anybody actually looks, their eyes might bleed.
 It's a slow thing, this total reorganization.  But I think it will be completely worth it.  The few changes that have been made are making everything run much more smoothly so far.  What are some of your favorite organization tips and tricks?
   

Monday, September 24, 2012

Horrible at These "Title" Things and Fatigue

I feel like I have just ended up writing and writing and writing so far.  So the short little title that I have ends up not being correct and not making sense. Whoopsies. I guess I just have too much going on in my head at this point.  I hope that evens out a bit and gets better...that the overwhelmed feeling starts feeling not so overwhelming.  Yesterday I was pretty grouchy.  I had a pretty busy day on Saturday, went to an afternoon full of MS workshops, and then took my medicine, or "shot up", as I affectionately call it Saturday night.  While some of the workshops were very informative, I had severe brain overload, "shot up" at 8:00 and was in bed at 8:30 and slept until 11:00 Sunday morning.  Because that's the way I roll these days.

One of the workshops was with a fantastic speaker, Dr. Gary Stobbe.  The entire 4 hours could have been him talking and I would have been happy.  I wrote notes the entire time and what he said made sense.  One of the things he talked about was how the brain in an MS patient works harder because in order to do a task, the brain is sending the signal over a pathway which has been damaged, so the signal then spreads out and goes over more pathways.  So in a regular, non MS-affected brain, the same task is going over one pathway in the brain, but in a MS-affected brain, the signal is still trying to go over the original damaged pathway, plus having to spread out to adjoining pathways to find an undamaged pathway.  The MS-affected brain, therefore, expends more energy, This goes for getting an actual physical task done, tying to explain something, reading, writing etc.  So imagine interrupting that person in the middle of said task.  This is one of the theories that MS fatigue is so common and so severe.  It doesn't have to be because you have been physically doing many different tasks, it can be because of your brain being active.  I am going with that being why I hit a wall Saturday night and went to bed for 14 hours.  Serious brain overload on Saturday coupled with my medicine which  makes me feel a bit tired the next day anyway.  Huge brick wall was hit and I sat on the couch yesterday other than to do one load of laundry.  My 2 cups of coffee at least got me that far.


Sunday, September 23, 2012

Some Basics...and Some Changes.

Yeah, my post titles are so original.  That is what this post is, though.  Basics about me, about MS for other newbies like me...Or actually more like basics about my MS and the changes so far.  Since MS is different for everyone. Yay!  We'll start with just me, though.  Just Jaime. Born and raised in Virginia.  Married to a man who is perfect for me since 2000.  We complement each other well and have 3 beautiful daughters.  We moved to the Seattle 'burbs 2 years ago.  Talk about a culture shock. It was what was best for my family, though, and we are getting used to it.  I am pretty introverted unless you know me, and coupled with anxiety, this has led to some thinking that I am stuck-up.  It is something I try to work on frequently, but it is difficult when social situations make me break out in a rash, get dizzy, have heart palpitations and tunnel vision.  Public speaking is not happening with girl.  After moving to Washington, I was approached by an old high school friend in a direct sales business.  Not something that I would normally do.  While I like going to home parties and listening to others give their presentation and looking at products, it isn't something that I thought I could ever do. I can't talk in front of people.  I freeze.  I break out in a sweat.  I shake.  Making phone calls, forget it!  But you know what?  I took that giant leap and signed up.  I figured I only knew a couple of people-great ladies that I met when I found a book club because I really needed friends-and if it didn't work out then it wasn't a huge loss.  So I have been doing this for a little over a year.  Started off pretty strong and then I started having these suck-ass symptoms.  Can't communicate for crap and am so forgetful.  Business has been struggling and honestly a whole summer of being used as a pin cushion wasn't real conducive to wanting to get out there and get "work by business".  So a new catalog came out for my company this month and I am trying to work it a bit. Starting slow...  It is difficult when you loss track of your thought in the middle of a sentence and say, "Um" every other word.  Really brings out that anxiety even more.  I was doing a ton of online and catalog parties, but even talking on the phone is difficult most of the time.  Not ready to give up, though!  I am thankful that I started the business, though, because I did make a couple of great friends.  One of whom has been a huge lifesaver during the past few months.

I mentioned my book club...I love reading.  Used to read anything, could pick it up and start it and at least give it the old college try and would rate it on what it was not on whether or not it was a fantastic piece of literature.  Typically would go through a book every couple of days.  Would stay up until 1:00 a.m. reading and seriously fly through it.  However, MS completely screws with that.  I can't read if there is background noise.   I start reading whatever words are being said in the background.  My eyes fatigue and start crossing by 10:30 (I made it until 10:47 a couple of nights ago! Oh happy day!) or I am just so tired the book or Kindle gets dropped on my face.  Usually, if I am reading in  bed it is my Kindle because by nighttime my hands are tired and hands will start shaking a bit. At least the Kindle has a button and I don't have to flip pages.  So not only am I not reading as fast, but what I am reading might not necessarily be making as much sense.  If it jumps around too much, if it is a certain style, etc.  Not the author's fault that I can't follow, but I still end up cussing the book.  Totally not fair to the poor book.  I have a couple of dozen books on my Kindle that are 15% done, and books all around my house with bookmarks sticking out of them.  Quite pitiful I have become.  

Cooking is something else that has changed.  I enjoy cooking.  I love to try new recipes and am a decent cook.  Not chef material, but can hold my own.  But, jeez...my hands get tired so I need to take a break halfway through cutting something, someone talks to me and I forget what I was doing and forget to season something else.  It is a hot mess in my kitchen these days.  Then when I do get something made and everyone else likes it, it doesn't taste good to me, or I can only eat a little bit because my appetite has decreased.  It is something that I have had to work on.  Make a list, cook when the kids are at school or completely otherwise occupied and not going to come in when I am right in the middle of an important step.  Time management is what I am working on here, also. :)

I have been working on getting more organized and delegating some household tasks to others.  If I can stay more organized that should help overall and if I cans stay ahead on different chores, then when there are days when I can't function as well, basic plans will be in place.  Yep, it's a learning curve...




Learning Curve

July 30, 2012.  D-Day.  "D" meaning diagnosis in this case. Of course I wasn't really surprised.  I had to do the research and press my PCP for a referral after he tried to wave my symptoms off as a pinched nerve when I finally went to him after 4 months of  issues in April.  Then I had to advocate for myself with the neurologist because my symptoms weren't "normal" Multiple Sclerosis symptoms and my brain MRI only showed one lesion.  I was still having symptoms, though.  I wanted more tests done.  I wanted to know why my body was rebelling against me and not doing what I was telling it to and not wait another year like this neurologist wanted to.  Luckily she listened to me.  After a spinal MRI showed 7 lesions and a spinal tap showed 22 O-bands and an elevated IgG, that was good enough for her to believe me.  I guess it is still like having a rug pulled out from under you, though.  One of my symptoms was vision problems-though they only lasted a few days and I didn't get into the Neuro-Opthamologist (Dr. that deals with vision problems that relate to the nervous system) until about a month after this symptom, so the only damage was some thinning of the optic nerve.  Not great, but not terrible.  This was still a big deal to me, though.  I have 3 kids, all girls, 11, 8 and 5.  What if one day I wake up and can't see, or can't walk.  One of my main ongoing issues is pain in my legs, and it gets worse as the day goes on or I do more or over exert myself (more on that later).  I get up a lot of the time and stumble around like someone who has had a long hard night of partying.  I used to wear flip-flops all the time (unless it is the winter and then it is boots) and can't wear them anymore. *tear* I have to wear actual shoes and my feet are screaming to escape.  Yes, I can hear them.  But my toes can't hold onto the flip-flops half-the time and the other half  the dragging or flopping action, if you will, would make me trip.  I was a trippin' fool, falling all over the place.  I have actually given up my flip-flops for safety reasons.  If you look out of your windows, you will see cute little pigs with wings up in the sky.  Oh, yeah, my KIDS...  Jeez.   Getting sidetracked is another huge issue.  Hate the thought that something is going to happen and I am not going to be able to take care of my babies.  My perfect beautiful girls.  So I fight.  I am SOOOOO going to try and not be a "poor me" kind of person.  That isn't healthy, right?  But every once in awhile a girl needs a good cry or a good bitch session.  But stress makes this disease worse, so can't do that on a daily basis. :)  This stupid disease comes with a learning curve.  You have a symptom and start getting used to it, and it changes.  Or you think that the symptom doesn't have anything to do with the MS, but then you find out it does...Every day you realize something new, and you keep on fighting.