Forget Me Not

I have always been absent minded.  It runs in my family.  For as long as I can remember, my Grandmother would always put post it notes on her refrigerator and mirrors throughout her house and near her phone.  Thanks to those post it notes, she hardly forgets anything as long as she puts it on a post it.  Now remembering to do that part is another story.

Instead of post its, I put everything on my cell phone.  Audio reminders are a must.  It makes life for me and everyone else in my circle so much easier.  MS impacts my short term memory because of the lesions in certain parts of my brain.  It's not only difficult for me, but it affects my friends and family when I can't remember a recent conversation or I forget something within such a short amount of time.  I really wish I could control my memory.  I work very hard to train my brain by keeping it active.  Puzzles, playing piano and even my job help tremendously.  Blogging is another great way to keep my brain active because I do a lot of research when I post a blog.   Bible study or anything that increases my ability to learn and requires a lot of thought also makes a difference.

My friends and family sometimes get frustrated with me.  They "forget" that my memory is heavily impacted by MS.  I had a conversation with a friend who expressed her frustration with my forgetfulness. She couldn't understand how I could remember specific details about the past so well but I forget details of recent conversations.  I tried to educate her about short term memory and what takes place in my brain.  Every time you receive information, you have a small frame of time to retain new information w/o losing it.  Most of the time you will only retain bits and pieces.   That goes for everyone.  Some people are gifted with the ability to retain information as it comes.  There are exercises we can all do to train our brain when it comes to memory.

MS affects your brain and spinal cord aka Central Nervous System.  Your immune system attacks the myelin (protective covering) that insulates the nerves in your CNS.  This causes scar tissue that can block nerve signals to your brain.  When the lesions are actually in your brain, this causes a whole different set of issues.  Combine the lesions in your brain and spinal cord and you have a very tough situation on your hands.  Think about it, every aspect of your body is regulated by your central nervous system.  Anything that impacts your central nervous system can wreak havoc on you from head to toe.  Cognitive functions, mental emotions, physical disability, and yes (you guessed it), MEMORY.

Having MS has brought me closer to God in so many ways.  I have been convinced that I was so right about something only to find out that I was so wrong.  That was very painful at times.  Not only for me but for my friends and family.  God taught me how to realize that I am not always right and it's OK.  Learning to put on mercy, humility and grace was a must.  Not only that but keeping an open mind.  I put all my trust in Him and seek His guidance and counsel now more than ever. I wouldn't have it any other way.   I couldn't imagine traveling this unpredictable road called life without God.

Now I Understand by Daesia Espinoza

This was written by my daughter Daesia when she was 14 years old.  She wrote this as an assignment for the IB program at school.  This is about my MS diagnosis from her perspective at the time. 

                                                Now  I  Understand

              I’ve  always  known  my  mother  to  be  smart,  loving,  caring,  and  strong.  But  when  she  was  diagnosed  with  MS  things  started  to  change.  Some  for  the  better  and  others  for  the  worse.   

             When  I  was  told  the  news  I  was  naturally  scared.  I  didn’t  have  a  clue  as  to  what  MS  was,  I  just  knew  it  was  hurting  her  from  inside.  My  first  reaction  was  to  cry,  but  she  was  able  to  calm  me  down  by  telling  me  everything  would  be  okay.  As  her  child  I  believed  her,  and  all  of  a  sudden  I  knew  she  would  survive.

            Now  since  a  few  years  have  passed  I  realize  I  should  be  grateful  for  what  I  have  and  not  take  anything  for  granted.  My  mother  is  alive  and  well and  there  is  nothing  I  would  want  more  in  the  world. I  am  proud  of  her  for  being  strong,  but  most  of  all for  being  so  courageous  and  keeping  her  trust  in  God.   She  will  always  be  my  role  model  and  hero.  

            This  experience  helped  me  better  understand  myself  and  the  world.  About  myself  I  now  understand  that  as  long  as  I  believe  and  trust  in  God  everything  will  be  okay.  About  the world  I  now  know  that  my  family  is  not  immune  to  the  craziness  around  us,  but  it helps  to  smile  and  have  a  positive  attitude.  In  the  end  everything  will  be  okay.

 Daesia C Espinoza

 2/25/10

           

Update: Doing Well

The past few weeks have been good.  I recently had some blood work done and found out that my vitamin D levels were way below normal ranges.  Not only that but my iron leves and potassium were also very low.  I am currently taking 100,000 iu's of vitamin D3 per week for the next 6 weeks.  Typically it should only be 50,000 iu's per week but my primary care physician saw fit to double that for a bit which is ok as long as it's monitored.  She plans to check my blood again in 6 months.  Isn't that odd considering that I previously wrote a post about vitamin D Vitamin Savvy ?  I was taking 2000 iu's per day and sometimes a supplement of vitamin D & A but not consistent.  I was spending a little more time in the sun than usual thinking that would sustain me but come to find out that I need to take a vitamin D supplement for the rest of my life.  I am also taking an iron supplement for the next 6 months and I took potassium for 10 days because it was borderline low and below normal.



HCTZ

In the case of my potassium levels, I know this has to do with the HCTZ pill that I take every day.  HCTZ  is a dieuretic used to treat high blood pressure.  In my case, because of MS I am unable to completely empty my bladder and I retain water which increases my blood pressure.  The water pill prevents me from retaining fluids and in turn decreases blood pressure.  At the same time, I loose a lot of potassium so I've been told to eat and drink foods high in potassium like bananas and citric fruit juices or take a potassium supplement.  It's a vicious circle because the HCTZ can affect the way your body responds to direct sunlight so you should avoid long periods in the sun.  Well there goes my natural vitamin D exchange (hence vitamin D supplements for life).  I wasn't doing so well in that arena anyways because MS does not mix well with the sun or heat in general.
My 35th birthday was on 6/13th and I received my 39th Tysabri infusion.  There was a small mix up with communication between my doctor's office and the TOUCH program so my infusion was delayed for a week.  My prescription expired and had to be renewed for another 6 months.  I'd say Tysabri is doing a great job for me as of now.  I enjoy the monthly visits.  My nurse and I have become great friends.  She is younger than me but she is very wise for her age.  She is expecting her first child in September and I'm so thrilled for her.  This week I found out that she is having a girl as we both predicted the month before.

I still work full time but the desire that God has placed in my heart is to branch out as a public motivation speaker.  I did some research on the internet last night and I found out that I should reach out to the local Toastmasters Club or Speaker's Bureau.  These clubs are typically not for profit and they meet once a week to help people become better speakers.  Low and behold, there is a club in the basement at my very own job.  Yep, that's right, there is a club that meets at NV Energy (my place of employment) every Tuesday from 12:05 to 1:05 so I plan to attend their next meeting this coming Tuesday (today is Saturday).  This could be the beginning of my break through as a speaker, stay tuned and find out............

Last weekend we walked for MS.  As usual, we had a wonderful time.  This year we raised over $4500.  Here is a little video that I put together of all the pics that I took at the walk.   I would like to say thank you to all my family and friends who participated in fundraising for Multiple Sclerosis and supporting me.

                                         http://youtu.be/uuoEFgN-80Y

Give Back Night @Chili's

Last night Chili's hosted a give back night for the MS Warrior's, my walk MS team for the National MS Society.  We had a great time.

For every table with this flyer, Chili's donated 15% of the bill to our team between the hours of 4 and 10.  We earned $160 for the MS Society Nevada Chapter.




Linda Lott, MS Society regional manager for the Nevada/Southern California chapter.  This woman has more energy than the pink Energizer bunny and if Duracel had a mascot, they wouldn't have nothing on her either.  She makes it easy for me to be a walk team captain.  She is a huge part of every effort that I make to raise money for the MS Society.

My husband and one of his brothers from another mother, Steve.  What I want to know is, who is the father?

This is part of the group that accompanied Steve, there were 12 of them all together.  They really know how to have a good time.

The rest of Steve's entourage.  Super cool people.

G Money (green shirt) and his wife Jennifer with their children and grand kids.

Left to right: My husband, me, daughter Aliya in the shadows, Brooke and Steve.

Aliya and her best friend Sarah and Dayna behind them.

There were a lot more people that supported us through out the night and I want to say thank you  to every single one of them   I also met some people that plan to walk with us next weekend.  I felt like a star last night!

My Health Update

I wanted to let everyone know what I've been up to and how I am doing.  My treatment and other medications make having MS as comfortable as possible.  My walking and balance are good these days.  My toes on my right foot are always slightly numb.  If I do too much or get too stressed, the numbness in my toes increases and it feels like I have a giant rubber band wrapped around my toes.  As soon as I get rest or calm down, it lets up.  I also get random stabbing pain all over my body.  Not all at once, sometimes it's in my back, or my face or my head but it never lasts for more than a few seconds.  It doesn't happen every day and when it does, it may only be one isolated incident and other times it's intermittent over 30 to 45 minutes.  Fatigue continues to be my number one complaint.  After a good night of sleep, I am drained within 4 hours to 6 hours of waking up but by late afternoon or early evening I begin to feel revived again.  Some days are better than others.

Mentally I am very forgetful but I think I am better in that area these days.  I mostly struggle with words or short term memory.  For example, my oldest daughter has a role in an upcoming play and I keep asking her when it is.  I know that it's in March but I can't tell you exactly what day without asking her for the hundredth time.  When it comes to word fishing, I have gotten much better at recalling the word I am looking for a lot sooner.  Otherwise I am sharper than a tack.  After a while, once I get it locked in, I got it.

I am preparing and fundraising for the MS Walk coming up in May.  So far I have raised $200.  If you are interested in making a donation, please click on this link:  donation
 then click on "Donate to Starla".

Thank you to those who have donated to me and the MS Society.  Your donation means so much to me and other MS patients.  Treatments for MS has come a very long way because of your generous support.

Flu Bug?

There is a nasty flu like cold virus going around.  One person (my cousin) ended up with pneumonia.  This virus has been really difficult to shake.  Since I am on Tysabri, I have to avoid sick people.  We all know how difficult that can be so I try to be proactive.  I like to use natural ingredients for different ailments as much as possible for me and my family.  I recently made a home made cough syrup.  It's super easy. 

There are only 5 ingredients: 
garlic
red onion
ginger
lemon
dehydrated cane juice (raw sugar)

You will also need a jar with a lid.

Just slice the garlic, onions and ginger.  Layer ingredients in the jar with the raw sugar, squeeze 1/2 the lemon into jar and place the lid on.  Within 1 to 4 hours, a concetrated syrup will begin to form.  I drained the syrup and bottled it.  It keeps in the fridge for 6 months to a year.  It tastes ok, very sweet and you may want to rinse with mouth wash to eliminate that garlic and onion after taste. 

My husband has come down with a cold but it's not flu like at this time.  I gave him  2 teaspoons of my home made syrup a few nights ago.  This is some very concentrated syrup.  I will continue to give him 1 teaspoon daily for the next 3 days.  I also gave a bottle to my Mom who is also sick.  I believe it's safe for kids too.  I gave 1 teaspoon to 2 of my daughters because they were complaining of sore throats a few months ago.  I also gave them some zinc.  It knocked whatever it was right out.  They did not end up with any long term infections.