MS Update

As I type this I am feeling so exhausted!  It is 1:39 a.m. and I should be asleep.  These MS medications have my system so off.

I spent most of the past eight weeks in and out of hospitals.  I have really good doctors with whom I feel very comfortable.  I trust them.  I'm just tired of seeing them!  It would be nice to go a few weeks without having blood taking out of me, medications being pumped into me through an IV or being put in the casket (a.k.a. the MRI machine).  Having said all of that, I gladly go through it if it means that it gives the doctors more insight into how to treat my MS in the most effective way.

People tend to lump everyone who has MS into one box.  MS does not attack everyone the same way.  We share some symptoms, of course, but I have yet to meet another person with MS who has been affected by it exactly as I have.  Many have had worse things happen.  Many have had barely any complications at all.  I find that I fall somewhere in the middle.

Now I'm going to rant for just a minute about something, so readers beware.  If I get the email again claiming that artificial sweeteners and diet sodas cause MS or cause your body to mimic MS I'm going to scream!  I have gotten that email forwarded to me by at least 40 people (some I didn't even know).  First of all, we don't use artificial sweeteners.  Secondly, I don't drink diet sodas.  I don't even drink soda except for on very rare occasions.  At first I thought, "They are just trying to help me."  Now, I just get so annoyed by it.  I mean, seriously — sending that email to me is like they are saying, "Hey, you brought this MS on yourself.  It's YOUR fault you have this disease."  I know that's not what they mean, but after receiving that email so many times...that's exactly how it comes across.  Okay, rant over.

My last flare began in February.  It was brought on by a sinus infection.  I'm just now getting back on my feet.  I'm so glad that this one is over!!!  It took several rounds of IV treatments, but I'm able to walk & talk again.  PRAISE THE LORD!!!!!!!!!!!

I have to have another blood test in a few weeks to determine if I still have antibodies to the Tysabri.  I'm hoping that I don't, but I also don't want to continue on a medication if it is going to harm me instead of help me.

So, that's the MS update.  Thanks for all the prayers!

Stacey

Flare

Just to let you know...I've been doing very little on the computer because I'm having some sort of MS flare or pseudo-flare.  I'll know more next week after I see my specialist in the city.  Please say a little prayer for me if you think of it.

Thanks,

Stacey

Crocs Helps MS

Crocs, Inc. will donate $2 to the National Multiple Sclerosis Society (National MS Society) for each purchase of the orange Beach style shoe pictured above. This shoe comes with a free National MS Society logo Jibbitz™ shoe charm to allow you to display your support for the National MS Society. Crocs, Inc. has committed to giving the National MS Society a minimum contribution of $25,000. For more information about the National MS Society please visit www.nationalmssociety.org.
• comfortable, cool, and molds to your feet • orthotic foot bed; advanced toe-box ventilation system • slip-resistant and non-marking soles • anti-microbial and odor resistant • ergonomic italian styling; wide, roomy foot bed; made with croslite PCCR material • buoyant; weighs only ounces • ventilation holes accommodate jibbitz™ brand charms

Visit Crocs Cares for more details.  You can also donate directly at National MS Society.

If you were thinking of purchasing these anyway, why not do it this way?  You may help to find the cure!

Infusion #4 Update

Thank you to all who have been emailing & private messaging me to see how I am.  I really appreciate the friends that I have made on here!  I am sorry that I haven't updated you on my Tysabri infusion.  I just am going through some personal things right now and I haven't been spending much time at the computer.

My infusion went very well.  Thank you for the prayers!  My nurse was able to get the IV in on the FIRST try!  I was so bewildered since this never happens!!!  I usually look like a bruised pin cushion by the time the port is in.

Gigi went with us.  Children are not allowed in the infusion center, so she & my DH waited in the waiting area.  My nurse kept going out & talking with Gigi.  Next thing I knew she was carrying Gigi in to see me.  Gigi climbed up into the bed with me, and Nurse Lori told her that if she promised to be very, very quiet and to not run around she could stay.  I was so proud of Gigi.  She was such a good little girl!  The nurses kept coming in and complimenting her on her behavior.  When Nurse Lori was taking the port out she gave Gigi a pair of the latex gloves so she could play nurse.  They are purple and I can hardly get that child to take them off!  She also gave her a roll of the self-sticking gauze that they wrap tightly around you to stop the bleeding.  Gigi's been having a ball with it!  She's designed Barbi clothes out of it and bandaged her stuffed animals when they get boo-boos.  She even has nursed her dog back to health with it.

Again, thanks for the prayers!

Stacey

Infusion #4 & Migraines

If you get a chance, please say a prayer for me today.  I'll be having my 4th Tysabri® infusion.  We have to drive into the city which always makes me nervous.

I've been battling with awful migraines for the past week.  I'm very tired because I'm not sleeping, and when I do sleep I don't feel rested when I wake up.

I have to admit that I'm not as "prayed up" as I like to be before my infusion.  My nurse tells me I have the dreaded "redhead veins" – they have a terrible time getting the IV in.  I have extremely low blood pressure which I'm told doesn't help.

I think that God keeps me awake sometimes so that I'll spend more time with Him.  You know, quiet time without distractions.

Gigi's Mom-Mom usually keeps her, however, she is sick.  We'll be taking Gigi along with us this time.  I'd rather not take her.  The infusion center is set up kind of like an ER or post-op area.  There are just curtains as walls between the beds.  Sometimes the people around you end up being not so pleasant patients – screaming & cursing at the nurses.  I'm hoping that Gigi will be able to remain in a waiting area with my DH somewhere in the hospital.  If not, I guess they will stay in the car.  They play games and have fun while waiting in the car, so it won't be the end of the world.  I'll miss DH being with me, though.  Having him with me makes the infusion time go by so much faster.

Back to bed now.  Just thought I'd do a little begging for extra prayers.  I'm a real wimp when it comes to needles.  It usually takes them an average of 4 times to get the IV in.  I've had them try 9 times before.  It's just not fun.

Countdowns