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?