Precipice

I sit here atingle. Pondering the possibilities of why. I have no answers. I think that is what bothers me the most about this disease. There are only questions, no answers. No answers to "how and why did this happen?", no one knows. No answers to "how do I control my symptoms?", no one knows. No answers to ultimate question "what is the cure?", no one knows.

I love puzzles, I love working through them and coming to a soultion. I like knowing the "who, what, when, where, why and how" to all things, yes I know it is not possible to know everything about everything, I still try though. It comes down to control. I like being in control, not freakishly so, I just like knowing that I can change something whenever I want. This I cannot change. Not one eensie, weensie, little tiny fraction of a bit. That is a tough pill to swallow.


I have had strange images coming into my head lately...the one above being one of them. I did not understand it's signifigance until I was drawing it...drawing it was amazing for me, it made me feel calm (art is awesome!). I see the blue at the bottom as my life before diagnosis, a bit wavy with some swells to deal with and the red is post diagnosis, when everything became a struggle in my head. No matter what I was focused on there was anguish beacause I did not now how to deal with my diagnosis. And now that's me, the blue dot, sitting atop the precipice. One way down (to the right) is into despair, anguish, frustration and ultimate bitterness...it's rather blah don't you think? The other way (to the left) is light, joy, humor, happiness, and the ability to live my life with acceptance for the things that I cannot change. Luckily in the drawing I am leaning more toward the left. I have felt my grief building, I have felt my anguish over the uncontrolable bubbling up, ready to explode, and now I just have to choose to accept it. This is where I am at.

Venting

So, I am going to admit something here. I know I said that I do not have anxiety...but I, I, Iiiiii do. Phew, glad I got that off my chest. After a chest xray, EKG, echocardiogram, and a breathing test, I am 100% fine...yet I am still having a hard time breathing. So, I am told that the answer is STRESS. Well, yes I am stressed. Anyone staying at home with kids around the same age as mine is stressed. Anyone dealing with MS is stressed. I still think though that maybe I have allergies, maybe my nose is stuffy which causes me difficulties because I always breath through my nose...but anyhow. My doctor set me up for a panic class and seriously, I don't even feel panicked. I feel stress but not panic. I feel stressed because I am going to a panic class. I want to cry actually. She thinks I'll learn a lot and maybe I will but I still want to cry...

...ok...I cried...I still feel like I am nowhere nearer to finding out why I can't breath though. I hate doctors.

Away Too Long and Thoughts on Sharing

Two of my favorite things...dandelions and fire-hydrants. :o)

I'm not exactly sure why I have strayed so far from blogging lately. I suppose a few things are to blame. It's spring (though it feels much more summery right now!!!) which means I've been super busy with my garden and playing outside with the girls. I have also reaquainted myself with my camera and cannot stop taking pictures. AND, I suppose this may be more to blame than anything, I feel like writing most when I am upset or something is going wrong with my body, which seems to be the norm lately. And I really don't want that to always be the tone of this blog...sometimes you just can't avoid it though as our thoughts center around what is most prominent in our lives at the time...

...so here's a little update on my health...I have had trouble breathing for a couple weeks, for the past five days my breathing has been constantly a challenge, when I do catch my breath it is the most heavenly feeling of relief (don't get me wrong, even though I can't breath well, I can't just sit at home...you will still find me running around town, having dinner, taking the girls to the park, walking to the store. Me sit around? Hah, that just doesn't happen!). My doctor and I agreed that I should go off my MS medication to see if that was the cause...since then my tingles have returned with a vengeance and while I have not had any improvement in my breathing whatsoever, I can now say that I see the benefit of my medication 100% and will no longer complain about the daily needles! I am looking forward to taking my injections now, really, I know that sounds strange but I have seen the light! I have an echocardiogram scheduled next week, if that comes back negative my doctor wants to consider anxiety/panic attacks...I am so opposed to this diagnosis because I am finally getting into the swing of my hobbies again and I am very happy with Emma's newfound independence, nothing there to cause anxiety!!! Plus, I just know me and I know that I have stress like all other mommies, but my breathing is no worse during those stressful times than it is when I am peacefully working in the garden. In fact, I can honestly say that the effort put into gardening causes my breathing difficulties to escalate. I am trying to convince my doctor once again to test my thyroid. I feel strongly that it may be the culprit for my difficulty breathing. Sometimes I think blaming stress and anxiety is an easy route for doctors when they just can't figure things out.

I do like to share my health issues here in my blog (though I will not make it a daily occurence, I promise!), I know it's not the most fun reading but there are other people out there who may get some benefit from what I can share. And I find sharing to be immensely important. Especially when mommies share...we all go a little crazy after we have kids and we need to know we are not alone. We all go a little mental when we are diagnosed with something and had expected to live our lives without such a challenge. In these instances, sharing is a necessity. We all need to find inspiration and support in each other at times when we feel we can't seem to lift ourselves up all alone. That is why I read other blogs, that is why I am on Flickr and why I am on Facebook. Being a stay at home mommy is especially lonesome at times and I find such joy, inspiration and support in my online communities!!

Oh and because I promised cupcake pics and then went AWOL, here's the yummiest vegan cupcake I've made so far (chocolate mint!)...


...and here's a picture of Emma enjoying her vanilla cupcake on her first birthday...I think she likes it!!!

OMG! Yummy!

OMG!! No I'm not 15, I just like the term OMG! Don't you just love the term OMG?!?!?I'd rather be 30 anyway...isn't 30 just so much better than 15? No curfew, no parents nagging about chores, no homework. AND you can make all the cupcakes you want whenever you want, at least until the hubs says to stop because you're running out of money because you can't stop making cupcakes. Ok, so I'm not there yet, but I bet I will be soon!!

I have been reading way too much about the toll eating so much meat, dairy and eggs (as most of us do) is taking on our bodies...ie. cancer, heart disease, MS, bladah, blah. On top of that, having read so much, I just can't bring myself to eat meat from an animal that is treated so mind bogglingly horrific (as most are)...so there you have it. Vegan and Me. To tell you the truth I love it. I haven't eaten anything resembling real meat, dairy or eggs in almost two weeks and I don't care. Granted, I sometimes find myself missing cheese, but all I have to do is think of the studies done on milk and MS and I don't miss it so much anymore.

The best part about being Vegan, the cupcakes! Yup, Vegan cupcakes...and cookies...and scones...and cakes...and pies...and I bet you thought Vegans couldn't possibly have so much fun! I bet you thought it was all about tofu and salad greens...well there is some of that as well. But seriously, I'd rather talk about the cupcakes. Lily and I have a cupcake date, it's penciled in for this Friday (since Alex will be home to corral Em). I can't wait! I'll let you know how it goes.

Oh, and we vacayed (much needed!!!) in Monterey for several days...I'll fill you in on that later too.

What a Trip

Three days, approximately 72 hours since my last steroid infusion and I can honestly say that I feel I am emerging from the depths of my own private purgatory. All in all, I've been in hell since Wednesday night, five days, five whole days that I never want to relive EVER. It amazes me that my doctor looked me in the eye as I asked for a rundown of the side-effects of the IV infusions and he said "oh nothing." Hmmm, maybe he should try it sometime. I dare him.

The first infusion brought agonizing muscle pain, so I wised up with the second and came home and just didn't move. The less i moved, the less pain I was in. By that night the tears had started. The third day of infusion ended with horrible squeezing chest pain and difficulty breathing and I walked out with tears streaming down my cheeks, not just from the pain, not just because this whole situation was difficult but from an absolute sense of desolation. A sense that my life would be changed irrevocably from this moment forward and how bleak an outlook it had. I have thought on a few occasions over the years that I may be suffering from mild depression...now I know better. When you can look at your beautiful, innocent daughters and think will all sincerity that they would be better off without you in their lives, you know you've sunk to the inky black depths. I can handle the muscle pain, I can handle the constant headache, stomach ache, thirst, tiredness...I can even handle the scary, squeezing chest pain that made a second appearance on Saturday...all easy compared to the mind bending trip that I endured. I barely moved all weekend. If asked too much I would snap! If given to much time to think I would cry. I read Twilight in it's entirety from Saturday to Sunday in the hopes of keeping my mind occupied with something else. I got up on Sunday determined to feel better. I asked Alex to take me to Starbucks to get some coffee and a scone. An effort to find some normalcy that failed miserably as I barely touched either of them. I cried most of the way home Sunday afternoon. I told Alex I was sorry that he married me. Sorry that I was broken and he was having to take on the care of the girls. I told him that I thought it was unfair of them to have me as a mother, broken as I am. What will happen in the future? How can I possibly be the mother they need? I woke this morning and the tears were gone but the melancholy lingered. The girls ran around and watched TV all day as I lay on the couch, buried in the second book of the Twilight series. I made their breakfast, I made their lunch. I comforted them when needed, I craddled, changed, cajoled, cleaned and generally tended to them with everything that I had in me...I felt guilty still that I just wasn't me.

Finally, finally, finally, after dinner, on the way to Wal Mart to get a sharps container for the injections I start tomorrow I felt the light come in again. I felt some hope, some sense that my future wasn't penetrated with doom. Some sense that I wasn't shackled as tightly to this disease as my mind had led me to believe for the last several days. What a relief. What an awful head trip.

This week should be much easier. I meet the nurse tomorrow and start my injections which gives me hope that I will not have to go through this sort of experience again for a long time. I also have my MRI tomorrow night to find out if there has been any disease progression...I'm thinking there must have been with the optic neuritis...we shall see how bad though...and then...nothing...sweet, blissful, calm, nothing. I can hardly wait.

Really?

I really have MS? Yup. I really have a disease? Yup. So, I can't just wiggle my way out of this cuz I really don't want to do this anymore? Uh, Nope.

I have this thing, a personality quirk really. I often start things and don't finish them. I know I am not alone in this! Right?!?!? Well, that's what I'd like to do with this MS thing. I tried it, I don't like it so much, so I'd just like to move on. Ugh, if only I could.

On Saturday evening I noticed that my left eye was blurry and hazy and I thought it had something to do with the sinus issues I've been having lately but then the sinus issues went away and the eye issue stayed. So, when I saw my neuro on tues. I asked if it could be optic neuritis related to MS and he examined me and said yes. He then told me that I had to take three straight days (1 hour IV infusions) of a steroid to get the swelling down in the hopes of keeping me from losing site in my eye (let me stress, lost sight is generally not permanent!!). So, I walked in there this afternoon in horrible pain whenever I would move my eye and I walked out an hour and a half later absolutely wired and in less than half the pain that I walked in with. I even took Nyah to dog training tonight. She passed her puppy training course! Go Nyah!

Now, however, I have this lingering metal tasted in my mouth, I have indigestion, I'm burning up half the time and frozen the other half and my joints feel like someone smashed them to bits. I'm told insomnia is not unusal and I'm ok with all of this because my eyesight is so important to me.

I get to start my daily meds as soon as the nurse comes to show me how to inject. Yay and not so yay. I am officially diagnosed with full-on MS now that I've had a second relapse. Bleh. At least when I told the doc what drug I wanted to take he didn't even show one hint of disapproval. He just said yes. Thank goodness for small favors!

My little walker!!!

I promised this post several days ago, but as usual I'm running a little behind. Cangrats to my little sweet Emmy-lou!!! She is officially navigating the ground on two strong, solid feet!!!! That absolutely means that i have to watch her much more closely and soon she will be off and tumbling with the older one...I can hardly wait!

Well, maybe I can wait a bit...I'm already breaking up bitty skirmishes between the two. I can't imagine the future that awaits. My sister and I had some knock-down drag-out fights, mostly with her knocking me down and dragging me out. I just found it so hard to hit back...she was about half my height and weight (ok, maybe 3/4) and I just felt that I didn't have it in me to strike someone. Because of that, the furniture and especially the doors that my sister slammed in my face took the brunt of my wrath!!! Take that foul couch!!! Ha ha!

Whoa

When it rains, it's pours and I'm not talking about the weather. I'm seriously rethinking this daycare thing. Though I'm not so sure it's related in any way, and the Nurse Practitioner basically confirmed it was not from daycare but poor little Lily has pink eye and an ear infection. That little girl never once complained that her ear hurt. I would never have known if she hadn't had yucky eyes that forced me to call and schedule an impromptu appointment this morning. Apparently her pink eye is from her very mild, lingering cold...you know, rub your nose - rub your eyes, that sort of thing and the ear infection of course is a direct result of the cold as well. I'm just glad she's on antibiotics now. She NEVER gets sick!!!! We've been having the best week too, I set up a little learning center for her to get her in gear with her letters and numbers. She's also learning where the US is on the world map and she's learned where California and Arizona are on the US map...how cool is that? I just hope she feels better soon and I hope little miss Emmy doesn't get the pink eye!!! Oh, horror of horrors that would be!!! My mom in law is coming tomorrow to visit, thank goodness!

In other FABULOUS NEWS little Emmy officially started to walk today!!!!...even with so much going on. Oh my goodness it is the most amazing thing to see! I love watching her balance and wobble and yet still step forward with confidence and seeing that sense of accomplishment written all over her face! WOW! She'll get her very own post tomorrow hopefully with a picture to prove it!!! She's beautiful!

My appt. went well today. I was told I did not have a sinus infection. I was told that I had to have a fever of at least 103 and puss running out my nose in order for it to be considered a sinus infection. Apparently I have sinus congestion. I must say that according to WebMD I do qualify as having a sinus infection...but whatever. I am taking sudafed, tylenol, mucinex and using a nasal spray-neti pot type thing, and as per doctor's instructions I am hanging my head upside down while I blow my nose, it just seems strange to me...but again, whatever. My face feels like someone poured lead into it, it hurts a great deal and it sucks. Additionally, I may be taking medication for hypothyroidism soon. I'm not surprised, I only have a half a thyroid and have been told many times that it will eventually fail and I will be on meds for it the rest of my life. Goodness gracious. I seriously went from a no-meds-for-nothing kind of gal to all-in in less than a year. I have decided to take it all in stride...no stress.

Also today I learned that my drug of choice for MS was approved for Clinically Isolated Syndrome (Monosymptomatic MS) diagnoses like mine! Woo Hoo! Now I just have to convince the dr. that it is the right drug for me. I could take the drug he wants me to take which is an itramuscular injection once a week that makes you feel like you have the flu for a day or two (um, the flu, a day or two, every week!!!!!), these side effects generally slack off after six months to a year...or I could take a daily subcutaneous injection that for most people has little or no side effects except for injection site itching, soreness, redness or bruising. Yes the once a week injection sounds convenient but, yeah, did I mention the day or two of flu-like symptoms every week???? I have girlies to take care of...I just don't think I could handle the flu every week on top of everything else I have to do. Well next Tuesday is the day of dealing for all that, that's my next appt. with the Neuro.

What a busy day this has been!!! It's absolute proof that life is chalk full of ups and downs. Today the ups were so fantastic even compared to the downs. I'm still in awe of Emmy, this might have been the day I finally cracked if it wasn't for her!

Argh!!!!

No, I'm not a pirate but I am sick AGAIN!!!! With another sinus infection! Seriously, who gets sick this often?!?!?!? Argh!

As a Weekend Should Be

Lately Alex has been working overtime, which I am at once very grateful for and find to be very taxing. It makes for a much nicer paycheck true but makes for longer workdays for both mommy and daddy and much less playtime family fun. I was so happy when the hubs said he'd be taking his usual every other Friday off this week cuz he was just too darn worn out from working overtime! YES!

We used up a bit of the extra cashola and treated ourselves each day to a meal out. We shopped for some Lily shoes for outside playtime. We drove around aimlessly until we had to stop for a potty break. We took the doglet for a walk or two (she is not so easy to walk yet!). I bought some artsy stuff that I am thinking long and hard about before i put it to use. (It's something that I've wanted to do for years and have always put off...why...I just don't know). We took the girls to one of the nicest malls around and let them play in the children's play area, eat yogurt and pretzels and drink lemonade! I actually took some photographs...can it be? We drank plenty of starbucks coffee. We played and read with the girls and even began a new bedtime routine. Oooh, and fun of all fun things, we cleaned up the backyard that our little doglet has ripped to shreds.


These are the kinds of weekends I enjoy. Nothing planned, just spontaneity. You wanna run around town? Ok. Let's pick up the house a bit. Alright. Mmmm, doesn't a nice juicy buger and fries sound good? Heck yeah!

We finished the weekend off with a bit of rain which didn't even dampen our spirits one little bit and made for some fun pics.


A weekend as a weekend should be!

Blue Skies

There is this fog that has been hanging over me. I feel a bit listless, my energy levels are so far depleted I can actually take naps...and i can never take naps! I have been sick, the girls have been sick, Alex has been sick...colds for me, sinus infection, and now I'm fighting another cold? What has happened?

I still tingle. After reading and absorbing as much as I have time for, I have conceded and decided to be among those who choose drug therapy for their MS. Many studies show early treatment to be best. Who am I to say that the treatment I receive won't help someone else in the long run, maybe even me? Maybe it will help me recover from this exacerbation and feel normal once again. I'll be talking with my neurologist in the next week or so. It's such a strange thing to finally accept all this. It feels crazy for a girl who barely ever takes over the counter medication to even have to ponder the possibilty of daily or weekly injections. At this moment it seems like a long journey I must face in the not so distant future. A journey I face with some trepidation, some uncertainty, but with determination that this is a challenge I was meant to tackle in this life and it's all going to be ok. There are so many others out there doing this as well and more and more have to face this every day.

Spring is springing all around and I long to have the time and energy to pull my camera out at least one or two times a week again! In the meantime, I had the absolute awe-struck pleasure to view and photograh this beautiful rainbow about a week or so ago! My husband ran in to grab all of us girls and show us just as he got home from work! Never have I seen a rainbow so strong!



"Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true." ~ Lyman Frank Baum

What a beginning!

It all started a month ago now...it hardly seems that long and yet it seems like forever. Lily got sick. Medium fever for days, then yuck of all yucks, mouth sores that lasted over a week, grouchiness ensued. She started to get better, then Alex got it. After a week and a half, he lost 14 pounds and the grouchiness continued. We had a reprieve for a few days, though Alex was still feeling a bit under the weather and then Lily (where does she get this stuff?) got a cold, then Emma got the cold and Alex and I both got the darn cold. Grouchiness, grouchiness, and more grouchiness. We pleaded with our families to help and my dad came for awhile and Alex's mom and sister did too. So far Lily is much better, Alex and I are on the upside of this darn thing which turned into laryngitis for me...and little Emma is now occupying our bed every night. Today she started to get a mild fever and is definitely not feeling better, poor baby.

Otherwise, our holidays went well. All of us were actually feeling pretty good at Christmas and started to get sick after we got back. I am thankful for small favors. I would have been very upset if Christmas were ruined!!! We did get a trip to the snow in just before the cold set in for all of us which was fun.

Oh, AND, we got a puppy!!! Nyah is her name, she is about 9 weeks now and growing like a weed. She's pretty rambunctious when she wants to be but super sweet and loving as well. She;s settling into training pretty easily too!!!

I can't wait for everyone to be 100% well again so that we can start this new year already!