17 February 2009

MRIs... Yuck!

I got a few emails from individuals - wanting to know what happens next! I'm sorry that I haven't updated this in a few days...

Well... here's the update: There's not a whole lot to update you on right now. ;)

I still haven't received the results on the lab work. I think the neurologists office might be waiting for the MRI results to come in. I don't think I mentioned that in my last posting... Since my last brain scan MRI was greatly improved (yep, yet more physical evidence that I do have a brain!), the neurologist sent me in for a Thoracic Spine MRI.

Did you know that in addition to lesions on the brain, MS patients can also develop lesions on the Spinal Column??? I didn't! I still have a LOT to learn about this disease.

Have you ever experienced a MRI? I equate it to being buried alive under a construction site. The noise is nearly unbearable & the task of being completely still for more than an hour is near impossible for me. I've been through quite a few brain MRIs, the latest one just last month... at least with those I was able to move my legs a bit when they got restless. With the T-Spine MRI, I was told to remain completely still... no deep breathing (which is my relaxation technique - yikes!)... no sneezing, coughing, etc...

Since I have been through quite a few of the brain MRIs, I've learned that what works for me is not the norm for most patients. Generally the technician will take breaks between the scan segments and talk to the patient. This technique is just not for me.

I don't want anyone to talk to me, I don't want the breaks between segments... Just hit the "go" button & get it over with! Unfortunately for me, the technician today didn't quite understand that message! In fact, I think he thought I was joking!

I had to tell him multiple times from inside that crazy machine to stop taking the breaks and just get the thing over with. I don't think it was until I told him quite sternly to either listen to me - the patient - because I know what works best for me - and get the scan over with in one shot - or find another technician that could do what I was asking for. I tried my best to stay still & remain calm in that machine for as long as I could - but when a 45 minute scan session ended up taking almost 90 minutes I was about to blow a gasket!

I have to say - having this disease and having to deal with these types of situations have really helped me be more assertive! I'm not entirely sure if that is a good thing, or a bad thing!

More to come soon!

11 February 2009

Suck It Up!

Funny title, isn't it?

Those three words resonated in my head all night long.

I mentioned in a previous post that I had a pretty crappy MS day this last weekend. I visited my neurologist (Dr. Au) Tuesday morning and he wants to begin me on a 3-day round of IV-steroids. I've only done this once before - and it was not a pleasant experience for me. The thought process of the doctors though is that if my crappy MS day was actually a flare-up of the disease, then this steroid treatment may be able to stop the flare-up a lot faster.

Ugh. Let me tell you that I am not a person that even likes to take a Tylenol. I hate taking medication and putting foreign substances into my system... My drug of choice: Coffee. Unfortunately that doesn't exactly help my current situation though. :(

I told my neurologist that I only wanted to do the steroid treatment as a last resort. So - he sent me in for some lab work - to make sure I don't have an infection of some sort... depending on the results of the lab work - he will make a decision as to whether or not the steroid treatment is the way to go. (On a humorous note - I don't think I've ever actually prayed for an infection before!)

Yesterday afternoon I went to see my primary care doctor (Dr. Doolittle). I've mentioned him on here before. I have to say, I've been with this doctor pretty much since I moved to California - and he is the absolute best GP I've ever worked with. He doesn't pull any punches and maybe its because we've been with him for so long, but I trust him more than any other doctor I've worked with in the past.

Anyhow - I explained to him my frustrations with the mornings neurologist appointment - and he laid it all out there for me pretty clearly. He told me I basically had 3 options:
1- Deal with the current issue & risk it becoming a permanent one.
2- Request to be pre-medicated before starting the IV steroid therapy (which would mean
even more medication... ugh!)
or 3 - Suck it Up! Do the therapy treatment, deal with the side effects for a few days - but end the current relapse.

I think that was pretty much the slap in the face I needed. Someone I have the utmost respect for (other than my husband or another family member) telling me to snap out of it. That these are the cards I've been dealt. I can fold them up - lay them on the table & walk away - not dealing with anything and trying my best to pretend it isn't a reality... or I can "Suck it Up" and do what needs to be done to ensure my health and my future with my children.

So - while MS truly sucks... I guess I need to 'suck it up' and play through this round... irregardless of how crappy it may at the current moment. Just because I may want to run away and hide - that doesn't mean that my denial of the situation will change anything.

So - here's to my new slogan for the time being: "Suck it up!"


09 February 2009

Good / Bad Days - and Fighting Back

Every person in the world faces good days and bad days. There are varying degrees of both, right? Good days can range from just being grateful that nothing major went wrong on a particular day to feeling like you are on top of the world and nothing can bring you down. Bad days range from mild annoyances at work/home to having the world crash down around you (metaphorically speaking of course).

This weekend my husband came home from work and noticed I wasn’t very ‘chipper’ and asked me if I had a bad day.

“Uh huh” I replied.

“What kind of bad day? Just in general, kids, or MS?”

“Bad MS day… you don’t really want to know.”

“I’m your husband… that pretty much means I need to know” he pressed.

So – I told him about my day and the problems I was dealing with. I honestly HATE that part of this disease. I’m not going to bore you or embarrass myself by sharing all the details – let’s just say I ran out of ‘spoons’!

Any time I have a bad MS day – or moment – there is that fleeting moment where I just want to crawl into a hole somewhere and hide from humanity. That moment that I feel like a broken person... I’m sure that is natural (at least I hope so!). But after that moment of self-pity – it turns into anger & a drive to fight back.

I see so much media coverage on Breast Cancer, Parkinson’s, and HIV (just to name a few) – and the drives to raise money towards finding a cure for these diseases – it annoys me at how little attention Multiple Sclerosis receives. My guess is this happens because Cancer, Parkinson’s, and HIV all follow a somewhat predictable path throughout the course of the disease – whereas Multiple Sclerosis is like playing the slots every day… you just never know what combination you could end up with from day to day. There is so much mystery and uncertainty with this disease – you just can’t tell what will happen from day to day – let alone week to week!

I am striving to fight back and regain control. I cannot allow MS to rule my life or factor into my life decisions.

02 February 2009

My Diagnosis / My Story / My Request

You know that tingling feeling your feet have after they've fallen asleep and start to wake up again? Imagine living with that all day - every day. I do.

Imagine sitting at your computer - and all the sudden you can't see a thing. Everything is complete fuzz and very very dark - and you don't know why. I will tell you first hand - it's excruciatingly scary.

I was annoyed/scared enough to see my family doctor (John Doolittle - no jokes please). He is absolutely the best I've ever experienced. Completely unwilling to let things slide and a memory like an elephant! Based on this episode and other things I'd talked to him in the past - he was the first person to utter those words to me: "I think you may have multiple sclerosis."

Those words hit me like a ton of bricks. I did anything and everything I could to pretend they'd never been said. Ignored his requests to send me for more tests. Until this happened:

Imagine walking in to a room and finding the person you love on the floor - unconscious. I can't imagine what that moment was like for Randy (my husband), but that is what happened.

Obviously - these events turned into a lot of doctor appointments and my introduction to neurologist Dr. William Au. After multiple MRI's and one horrific spinal-tap, I was officially/formally diagnosed with MS in July 2005.

Randy and I met with Dr. Au and had a lot of our questions answered. We were given information on the various treatment options and told that we should decide if we wanted any more children before a treatment plan was started.

After a lot of thought, we decided that we were content with our family and I began a Rebif treatment regimen that September... only to find out three weeks later (SURPRISE) that I was pregnant!

Obviously - I had to stop treatment at that point until after the pregnancy.

After Heaven was born (May 2006), I joined on to a medical trial through UC Davis. The trial was looking into an oral medication (as opposed to injections). Unfortunately, after being involved in the trial for just under a year, I was ineligible to continue due to other complications and a low heart rate.

I am currently taking Avonex. Once a week Randy gives me the injection. I really am thankful for him... if I was left to give myself the injections - well - let's just say that it wouldn't happen. I also began following Dr. Swank's MS Diet.

People ask me - how the MS affects my life - what symptoms I experience. The biggest (and most annoying) - Fatigue! This is the one that I hate the most. It has the biggest impact on my children and our family activities. Ugh! I can't tell you how often I'm tired of being tired!

The other main symptom I deal with daily is a major loss of sensation & strength in my left arm and leg. I am working with two great chiropractors in Granite Bay (Golden State Chiropractic) on this though. They have spent a lot of time with me - working on stretching techniques and various adjustments that are helping improve the strength.

There have been good days and bad days. Thankfully, the good outnumber the bad!

My dream - when my daughters are my age - a cure will have been found and MS will be a fading memory.