Hard to write about

I am not sure why this blog is so hard to write.  Maybe because I haven't blogged anything personal and painful in such a long time.  Maybe I am just tired of MS.  Tired of talking about it....tired of having it.  Tired of feeling like a burden and a disappointment to my husband, family, and friends. 

This has been a very long and very painful week.  To explain why I have to start about three weeks ago.  I was awaken from my sleep one night with this burning in my hands.  I thought how weird this was....but then I remembered how for about two or three weeks before that, I had been waking up with my hands all stiff and painful and feeling like they were swollen but they weren't.....and how they had been sort of shakey.  Then all of a sudden this thought popped in my head...."Oh no, God please no....don't let this be another flare up....not my hands!"  I cried myself back to sleep that night.  Night after night my hands would burn and the only thing that would help would be to make sure they were not under any covers, just like my feet.  So after a few weeks I called my neurologist.  They scheduled an appointment with me right away and then schedule a brain and spinal MRI to check for more brain lesions.  This all happened two weeks ago.  The MRI's showed no new lesions....so I thought it was all over....no new flare-up.  Then a week ago from Friday my doctor said that where the lesions would be in my brain are very hard to see.  They can hide in the MRI's and not show up but are still there.  He wanted to run some more texts....this is how the painful week started.

On Wednesday, I had a EMG.  This is where they send electrical shocks through your arm.  They start low around your wrist and then move up to your elbow.  It hurts.  Then they stick needles into the muscles of your hands, wrist and arms and have you contract your muscles.  And that hurts.  That test showed that my nerves and muscles in my hands and arms were working great.  So that led my doctor to believe that the signals were getting messed up in my spine and that I did possible have a lesion somewhere in the brain.  So the last test he wanted to schedule was a lumbar puncture.  That was scheduled for two days ago. 

I have to admit that I did something awful on Friday.....I lied to my dad and to my husband.  I told each of them that the other was taking me to this test and went by myself.  (fyi.....I have already apologized to each of them)  I am not sure why it was so important for me to do this myself.  Maybe I just thought that I wanted to handle this by myself from now on?  Maybe I thought they really didn't want to go and just felt obligated?  I don't know.  Anyway, Friday at 9:30 I was curled up in a ball on the table getting my first shots to numb the area of my lower where they were going to stick a needle in and remove 10cc of my spinal fluid.  It is about a 20 to 25 min process.  About two minutes into it everything turned awful.  I started all at once to turn white (I only know this because the nurse kept saying it to my doctor), start shaking, start sweating, dry heaving, and crying.  This all lasted for about 20 mins straight.  About 15 mins after the test they had to draw blood.  The first nurse tried 5 times but my veins blew each time.  She kept apologizing (she was the same nurse that was in there for the spinal puncture) and felt awful.  Then a different nurse tried and blew two more veins.  So she said over and over I am so sorry but I need to draw the blood and the only place left is the inside of your wrist.  She told me she had only done this once before because it is a last resort because it is painful.  She was right!  I had to stay there for an hour and then got to come home and rest for about 45 mins, grab a bite to eat, lock myself in my bedroom and cry,  and then drive back to the hospital to start my steroid infusions.

You are supposed to have your blood drawn before your infusions to check your sugar and potassium levels but thankfully the nurse who drew the blood from my wrist drew extra and they had enough left over to run the tests!  The nurse who started my infusions was so sweet.  I thought I was done crying for the day but she asked my if I had any kids and I started bawling.   I couldn't talk for about 10 mins.  I kept thinking of my kids at home all day by themselves while I was here at the hospital.  Why were they stuck with me....they deserved so much more!  After I settled down she tried to start the IV in my hand and I just started screaming because the pain was crazy.  The vein had blown and after seeing all the bruises already on my hands and arms she decided the best place was right in the bend of my arm.  It is a very uncomfortable place.  The infusions take about 2 hours and since it is a LOT of steroids your body can react different ways.  For me, I get an awful metallic taste in my mouth the rest of the day which makes eating hard and I get sick to my stomach.  My lower back was also feeling very sore and having small contraction-like pains every 1/2 hr or so from the lumbar puncture.  I got home Friday night at about 5 and had already planned a party at my house from 6 to 7 that I didn't want to cancel at the last minute.  So I got the house ready, had the party, and then about 8 went up to bed.  By then my IV in my arm was hurting (I kept it in so I would have to be poked again on Saturday) and I literally begged Matt to pull it out.  He said no!  Then my back was contracting every few minutes and I couldn't rest at all.  I ended up taking lots of pain medicine and Benadryl to fall asleep. 

Saturday I had the girls' soccer games in the morning and back to the hospital at noon.  Matt left right after I did to go to Chicago until Monday night for work.  I am glad he is getting a break from all of this....he needs some time to himself!  : )  They had to take blood this time and went straight for the inside of my wrist again....OUCH!  Then I got hooked up and my infusions started again.  One of my twins went with me and we cuddled on the chair and watched some movies and it was sweet.  I once again had the metallic taste and upset stomach.  I had the nurse take out the IV yesterday because I couldn't stand the thought of another day with that thing in my arm! 

I have to go back today for the last infusion at noon.  I don't want to go.  I want to stay in my bed all day and hide from the needles waiting for me.  I know I sound like a baby but I have reached my limit with all of this.  I write this VERY long blog to simple ask for prayer.  Obviously I need prayer for the courage to go back today!  : )  But also for something more...for my heart.  My heart is so cold right now and I feel left by God.  I just feel hopeless.  I know in my head God never leaves us and always has a plan for us but my heart doesn't feel it at all.  I desire closeness with my Savior but feel like I am just disappointing Him as well.  Thank you to all who feel led to pray for me and my family.....

Herbalife

I have been doing research this past year into nutrition and what my body needs with MS.  About 4 months ago I came across a nutrition club in my area that sold Herbalife shakes.  After researching this company I learned that it was amazing!  It is ran by a panel of doctors who know nutrition!  I have decided to become a distributor and wanted to encourage everyone to check out my website, https://www.goherbalife.com/jamibarden/en-US.  This isn't just about "money" for me....I think EVERYONE could benefit from these awesome products!  Enjoy!  : )

Funny but true sign

My husband found this and I had to share....it is SO true!  : )

LOVE

I have been really trying to teach my kiddos about the importance of love.  Not the "love this shirt" or "love my dog" kind of love, but the love Christ talks about in John 13:34-35.  It reads, "A new command I give you:  Love one another.  As I have loved you, so you must love one another.  By this all men will know you are my disciples, if you love one another."  And how did Christ love us....well John 3:16 says he loved us so much that he died for us. 

Since most of us are not going to physically die for each other, we are told in 1 Corin 13: 1-13 how we are supposed to love.  This passage isn't just to be read at marriages and then forgotten about.  Paul wrote this to tell us how we are to love others, and this is whether they "deserve" it or not!

As y'all know I "love" music!  : )  So here is a song that I was using this morning to once again talk to my children about true Christlike love:

btw...don't get caught up in the video if it is different then you thought it would be...try to just listen to the lyrics!  : ) 

Brutal birthdays and answered prayers

My birthday was last month and I was completely dreading it.  Not because of getting older....so far that hasn't bothered me!  : )  It was because it was this time last year that I got my first major MS symptoms (I say major because looking back my husband and I think there were a few minors signs we missed).  My neurologist said that medically they would be calling this permanent in one year....and obviously I know only God has that final say....thankfully!!  But regardless I was still really upset and almost didn't want to acknowledge my birthday at all. 

God was really gracious and with the support of my husband and family and with the busyness of our move my birthday came and went great......well almost!  Three days before my birthday me and the kiddos got into a minor car accident.  So I tell you this not as a "woe is me" but as something almost funny.  Two days after this accident and one day before my birthday I woke up and got dressed and then as I was just putting my shirt on I fell to my knees in extreme pain.  I couldn't move my right arm and pain was shooting down my neck and into my right shoulder.  We were in the middle of our move and I couldn't help or do anything so my mom suggested I go back to the chiro I was seeing last fall for my MS.

Sorry this is getting longer than I had planned!  : )  LONG story short....I had been praying that we would be able to afford me going back to the chiro for adjustments, massage therapy, and acupuncture....things that had REALLY helped me deal with my pain.  That is one reason we moved and downsized our home.  BUT because of this accident my car insurance is paying for my treatment with NO co-pays or without raising our premiums.  : )  WOOHOO! 

What is funny is that it was right around my birthday again this year.....so I am kinda wondering what craziness I will encounter next March?!  And in case you are wondering....all the kiddos are seeing the chiro as well for some minor adjustments, but are doing great and should have no lasting injuries.  : )

My Psalm

I know I post a lot of songs, but after God's word, they are what really reach my heart and minister to my soul.....

Humility

Pride.....this is a word no one likes to admit they struggle with.  It can be a very yucky word.  But truthfully I struggle with pride...probably daily.  But I don't want to....and thankfully I don't have to.  Our Savior is so gracious to leave us examples of how to live and we have the POWER of the Holy Spirit in us (as believers) to change.  I was studying John 13:1-17 (listening to Truth for Life) this morning and I was struck (again) by how humble Christ was.  I wanted to write down some things that really convicted me.

1.  To become us, human, was such a HUGE step down for him.  Philippians 2:7 "but (Jesus) made himself nothing, taking the very nature of a servant, being made in human likeness."  Being human is nothing.  What I mean is how many times do we think we are all that....or are so great because we have done this and that?  What we constantly need to remind ourselves is that we exist solely for Christ - despite our gifts - and not be like the disciples arguing over who is greater.

2.  If anyone "deserved" anything, it was Christ himself.  He should of been in a palace with servants but here he was washing the feet of others.  He didn't "do" anything to receive praise from others but to just obey his Father in heaven.  Phil 2:8 "And being found in appearance as a man, he humbled himself and became obedient to death - even death on a cross!"  Being crucified was as humiliating as it could be.  He hung there while being mocked.

One quote that I heard really summed it all up for me....I will have to paraphrase it.  "Humility is freeing ourselves from our own pride, realizing we are not the center of the universe, and still doing the most mundane acts without recognition and all with having joy."