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I have not published since April of 2010 because my world spun out of control for months!  As you know, this isn’t unusual for those of us with MS.  My year was filled with extremes beyond my comprehension!  Extreme joy, sadness, illness, and loss; some days I felt like a yo-yo!  Therefore, it is with a joyful heart that I bid 2010 goodbye! 

I find it amazing how much hope I place in a “New Year”!  I mean really, why do I feel renewed hope?  Nothing has changed but the date on the calendar… But, somewhere in my heart it feels like I have been given an opportunity to be better at…fill-in the blank…everything.  To me, a New Year feels like when I was a kid and my sister would beat me at a game; if you were like me this was commonplace!  I would feel downright angry, failure consumed me, and I would want to give up!  I think my sister could see these emotions welling up in me because every time,  the moment before defeat completely consumed me, she would get this look in her eye and say those magic words, “You can have a Do-Over.”  The darkness would abate and the elation I felt was akin to having a genie grant me three wishes!   Yes, I have been granted the opportunity to overcome!  And, that is exactly how I feel every New Year… My heart is filled with thoughts of “I will try, I will accomplish, I will enjoy, I will, I will…”  you get it.  It fills me with the renewed hope.  Hope for a cure, a better pill, less pain, more stability, more love and less hate………more to follow!

So, as you begin this year, remember we’ve all been given a “DO-OVER”!  Take the time to make the most of your “Do-Over” this year…

Where is God in this?  He is in the center of my heart giving me the opportunity to be forgiven for my mistakes and blessing me with an incredible sense of hope for tomorrow…

Spring time in Colorado is amazing!  One day you have a foot of snow and the next day it is 70 degrees!  You never know what is around the corner but it is always beautiful.   I am beginning to settle into our life here…FINALLY!

Tomorrow is another day with doctor’s…I am not looking forward to seeing the allergist.  They plan to test my skin to see if I have a reaction to the Premerine!  The doctor will wait a while and see how my skin reacts.  I am praying that it doesn’t react at all however, if it doesn’t,  the will “dose” me until the evoke a response.  What does that mean?  Well, it means they are going to give me five pills of the medicine to see if they can send me into an anaphylactic reaction!  I am asking myself, “self, why are you going through this?”  I am still not sure.  But,  I am really, really missing my estrogen…so here I go again!  It will all be done in a controlled environment so I will be safe albeit most likely uncomfortable and itchy.  I will let you know the outcome…

My MS seems to be gone or sleeping and I am relishing every minute!  I feel great despite the fact that commercials make me cry!  My energy is great, my attitude is wonderful, and I love being present in every moment of my day!  My husband loves me, my dog is smelly but loves me, and I am spending positive time with my girls!  I am having a great Spring.

So where is God in all of this…duh, everywhere!  I pray you all have a spirit filled self-connected change of season!  If Spring is this wonderful can you imagine what Summer will bring!

Since our last visit I have had several new experiences both with MS and with God.  I would rather gloss over the ugly stuff and focus on the wonderful outcomes unfortunately, that is not what I promised to do when I started writing this blog.  I told you I would give you my perspective as someone with this diagnosis and share with you everything.  Hold on you are in for a ride tonight!

Not last Saturday but the Saturday before, twenty-four women came knocking on my door..oops, my mind slipped let’s try this again.  Two weeks ago I had the pleasure of attending a woman’s encounter at my church.  It was typical of any spiritual retreat I have ever attended with the exception of my very personal encounter with the Holy Spirit.  Now, I don’t know if you all have ever had a “mountain top” experience but I think that is how most of you would refer to my experience that very snowy Saturday.

Like I said, it started as a typical church retreat.  I was sitting in the front which allows for no distractions.  I sit up front because I am so nearsighted if I sit in the back I miss half of the presentations, not because I am that Holy!  At first, the whole thing felt like blah, blah, blah;  been there done that; so much so that  I almost left after lunch.  Let’s face it I am totally driven by food so I was not going to leave until after lunch.  If you know me, you know that during breakfast I think about what I am going to prepare for dinner.  But after sitting around having meaningful and honest conversation with other women, I thought I would stay for one more hour.

When I returned to the sanctuary to listen to another speaker talking about things I had listened to several hundred times before,  I realized I was listening with a different mindset.  I became keenly aware that even though I had heard this exact teaching before, I had never taken the words to heart.   I think this is an amazing saying, “taking the words to heart”,  isn’t this saying  really a statement about how words impact our spirits?  It not only speaks directly to the fact that we need to be open to receiving the message behind what someone is saying before allowing them to become part of who we are, but that we must also be prepared to fight against them if they are even slightly damaging to our inner peace.   Until we are ready to take the words we hear to heart,  how do we apply the knowledge they impart?

So you are probably wondering what she said, to be honest I can’t remember exactly which scripture she was quoting but it can be summed up like this:  To be a Christian means to live with a forgiving heart.  This means you need to forgive everyone who has ever hurt you…this is not the news that impacted my life, this is how I try to live my life.  The soul shattering statement, was if you hold unforgiveness in your heart for yourself,  God, cannot and WILL not forgive you.  WHAT?  Isn’t guilt part of being involved with God, being a Christian?  Doesn’t he want us to walk around flogging ourselves for our mistakes?  Of course, all of this flogging occurs inside our heads and is NEVER to be shared with others,  EVER!  The truth is,  it would be disastrous if we ever let slip the way we allow guilt to govern our innermost opinions of ourselves.  In fact the world might spin right off its axis!  If every woman in the world spoke to others the way we speak to ourselves, we would all be hiding in caves.

In spite of knowing that I was going to cause the destruction of the human race, I opened my mouth and told a small group of women that I held unforgiveness in my heart for all of my failures, that I was not worthy to receive forgiveness from anyone, let alone God.  I asked them to pray with me to allow God to forgive me for divorcing the girls’ father and for not being able to protect them from the hurts we caused each other during our marriage.  I honestly believed that I would be able to protect them from the sense of rejection I had experienced by removing him from our daily lives.  I expressed feelings of guilt for being blessed with Marv who is such a wonderful husband, friend and human being!  My Marv, the man who accepts me with all of my failings and treats the girls as if they were his own.  Basically, I had an emotional outpouring of my innermost thoughts and the world kept right on spinning!  Not only did the world continue spinning but all of that yuck was replaced with a deeper sense of God’s grace.  Right in that moment one of the women who was praying with me asked if I had an illness.  I said yes.  She said is it MS?  I said yes!  Please know I had never met this women before in my life, she just pulled that one right out of the sky…I was completely freaked out!  She said to the other women in the group that they needed to pray for my healing right then!  I was even more freaked out but what the heck, I will take all the help I can get!  They all prayed while I thought about how grateful I was for the forgiveness I had just received but how could I accept more?  Almost immediately that inner voice began bringing up all of the reasons why I was unworthy to receive anymore blessing in that moment…I chose to allow them to pray for healing, but I didn’t take their words to heart until later that evening when I said, “I will accept whatever healing God has for me”!    It was an amazing experience!

On the following Tuesday, I called my brother who is a youth minister in Texas and shared the experience with him!  He warned me to be aware that with great blessings come great follies.  He encouraged me to read and pray and pray and pray.  I mostly listened to his advice.  And then the bomb dropped on Thursday!  I was sitting at my desk when I felt a burning sensation all over my body and I felt like I had something stuck in my throat!  I turned to a co-worker and asked her if I looked like I had a rash on my chest and face.  Her eyes got huge and she said, “YES, you look like you have a sunburn and you have white stripes running all over the place!”  I grabbed my purse and drove immediately to the nearest urgent care!  I was having an anaphylactic reaction to something, but what?  I hadn’t eaten anything, I hadn’t had anything new to drink and the only medications I had taken were thyroid and Premarin.  Nothing, I mean nothing was new.  I walked into the urgent care, the receptionist looked at me,  grabbed the nurse and put me in a room.  Before the doctor entered the room, the nurse had the epinephrine ready to go.  When he walked he nodded at her and she gave me the shot in my thigh… OUCH!  They administered several other medications all of which made me feel like my heart was beating between my ribs!  I was no longer attempting to rip my skin off however, I was on the ceiling!  I thought my heart was going to explode and then the Valium!  Yeah for IV Valium pushed through quickly by an understanding nurse!  I rested for an hour or so and marvelous Marv arrived for the ride home!  God, I love this man!  He chastised me for driving myself and asked me to promise if that ever happened again I would accept a ride from someone else; I promised.  I don’t think I was thinking straight; I just knew I needed to get to the doctor FAST.  So far the consensus is that I had a reaction to the Premarin.  I had my first of many appointments with the allergist today and there are many tests to come, but for now, no more Premarin.  I will keep you posted…

So where is God in all of this, right here in the center of my heart beaming out from behind my eyes!  I feel GREAT!

I have been too tired to blog…this is a message from my supportive and loving husband…He is really amazing and I am blessed to have him!  This has been a confusing week for us and his heart is in the words below…enjoy

I have heard this frequently that past thirty hours……..”Where is God in all of this?”   I hear it most frequently rattling around my own brain, and I already know the answer.  God is still here as always, so more appropriately I ask, “where am I with God in the midst of all of this?”  The answer to that requires a bit more prayer and reflection.  God has not abandoned any of us, not the families, nor the friends and, no, not even the victims.

If we examine history, we see that God has always allowed us free-will (even the free-will of depraved individuals), and that has a far reaching impact, on each of us, our communities and our society as a whole.  These events take place far more frequently in our generation because of the society in which we live and the lack of personal and community responsibility that we display.  We need to take responsibility for knowing who our neighbors are, and we need to reach out to them.  We need to be part of something bigger than what is within our four walls.  If we know who our neighbors are, we all become more accountable to one another.

When I was a teenager nearly 30 years ago, in our small community, we all knew each other, and we held each other accountable for everything.  We are all up in each other’s business, all of the time, but it sure helped us stay on the straight and narrow.  We also had guns, and we took them to school.  Sure they were locked in our pick-ups so we could go hunting before and after school, but we never even thought about turning them on one another, even in the heat of the moment.  There were plenty of fist fights and no one ever thought about heading out to their truck to grab a gun and get even.

There were also those in town who most of us considered to be “a bit off”.  We did not shun them or ignore them, but we acted firmly yet empathetically to ensure that they too stayed on the straight and narrow.  It wasn’t fun; it wasn’t easy, but it was our responsibility, and we delivered.  I believe that we still have and must share in that responsibility today.  We simply do not do it, and we need to change.  We have every excuse in the book ….we’re busy….we’re sick… we’re tired…. our kids have this and we need to do that, but the bottom line is that, on the whole, we simply do not make the choice to reach out to anyone.  It is much easier to shut ourselves away; isolate ourselves, and blame someone else for the problems that we see all around us, but the bottom line is that it will not change unless we make it happen, so “what’s next?”

Now it is time to pray, reflect and most importantly start doing….not exactly sure what, but start doing something.  There is no plan of action yet, but with prayer and reflection, God will give us a plan.  It may start small, and it will probably start in our church.  We will be forming new fellowship groups next month, and one of our outreach groups is now building homes for Haiti.  These are a good place to start.  As we come together in these activities, we will start to re-build a sense of community, and it will grow. God will reveal more.  As we get bits and pieces from Him, let us be patient and wait on the Lord, but while we’re waiting for answers, lets remember to spend time in prayer, reflect and start doing, something small is fine, but do something.

Today I will be brief, well brief for me.  I woke up this morning unable to move my legs and with a migraine.  I have been using my walker all day because my legs are weak!  The thing I wanted to share with you all and that makes me so angry, is the fact that these are known and normal side effects of Tysabri.  However, when I asked the doctors, nurses, and other staff what I could expect they all gave the same answer.  Most patients do exceptionally well with this infusion!  When Marv called the neurologist this morning he said that this happens to such a small number of patients that they don’t publicize it!  Are you kidding me!  As I stated yesterday, I FALL IN THE LESS THAN 1% OF THE POPULATION!  THEY KNOW THIS AND YET NO ONE SAID ANYTHING! 

The weakness I am experiencing has not surprised anyone in this house but it has scared us all!  The doctor said that this is just exhaustion and I will be fine by tomorrow.  He wanted me to go to the ER for an MRI for to look for new activity, DUH, I just had a steroid treatment for new activity!  No, I will not go to ER and spend the time or money on another MRI!  My neurologist was not on call this weekend.  The good news is that it is too early in my treatment to be PML or an indicator that I will develop PML.  If you don’t know what PML is search Google for Progressive Multifocal Leukoencephalopathy.  I am so tired, weak, and my head hurts!  They all knew this could happen but no one had the tenacity to speak up!

Thanks to my sister for rescuing my youngest daughter from this day.  May their bond grow deeper and I pray that she feels safe in the face of the monster!  She was so upset she cried when she looked at me…I can’t imagine what she and Marv go through…I worry when they have a cold…someone say a prayer for them to be blessed and emotionally safe through this journey.

So, where is God in this…today he is just holding me and letting me know this too shall pass!  I have to find strength in my faith that there is a life after this one…

Thank you all for you prayers and support!  I know you are sending me all of your positive thoughts and love…

Yesterday, I had my first infusions of Tysabri.  I was scheduled to begin at 12:45 and it took them until 2:15 to find a vein that they could use for the IV!  I am now considering an implant that would be placed under the skin in my upper left arm.  This site would allow me to never experience the pain of medical people trying to find a vein in my arms and it would allow them to administer all IV treatments for the rest of my life…Again, considering it… The site would have to be flushed with saline every 6-8 weeks so my Tysabri treatments would cover that and when and if I have to stop them I would just visit the infusion site every 6-8 weeks for about 5 minutes…This seems like a great solution to my vein problems.  After years of medications and steroids my veins are so scared that it is difficult for me to have any blood drawn and they say it isn’t going to get any better…still just considering…  I would appreciate any information you may have about having this type of implant.  If you have one or if you know someone who does, please let me know how it worked out.  I am truly looking for feedback on this question.

Now onto fun and exciting things like how am I doing after the infusion…I did remarkably well with it!  I only had a few minor issues, very rare, things they have only seen once or twice but they had never seen the reaction I was having at the infusion center where my treatment was being administered.  So what happened?  About 30 minutes into the treatment my right ear and only my right ear turned bright red and swelled up!  My right eye turned red, swelled up and began to itch terrible!  No hives or breathing problems just a really weird reaction.  This is not shocking to anyone who is close to me!  But, they were stumped!  I love doing that to people who think they have “seen it all”!  I don’t know why, maybe I have gotten so used to being in the “less than 1% of the population will have this side effect”, category that I think it is funny!  As long as I am not having a life threatening reaction I’m cool with it! :)   I just love to watch their faces, see them run to their documentation, and then look back at me all doe eyed with concern…it really is comical from my chair!  I know that there is always something that can be done, usually they start with Benadryl, so I don’t panic.  After another hour my eye and ear returned to normal without any intervention which was my choice not theirs.  They wanted me to take Benadryl but I refused.  It is nice to know I have the acquired the strength to say no to a “medical professional”!  I assure you it wasn’t always like that for me!  Whew, in the beginning I would take anything they recommended without question.  That is a big mistake! 

The next reaction got my attention, the right side of my face went numb like when you see the dentist he gives you novacane!   They seemed to expect this and were mildly concerned so I didn’t panic.  However, I did agree to the Benadryl but only as I left the center.  I drove myself and knew it was only 15 minutes from the parking lot to my door and the medicine would not be in effect until I was safely home.  They actually called me to make sure I made it home safely!  They were really nice people.   I guess working with cancer patients makes you all touchy feely and concerned…still it was a very nice thing for them to do.

This morning I awoke with a screaming migraine…this is a normal side effect!  Yeah!  So, I took my migraine meds and have been playing on the computer all morning… I actually feel pretty great!  Of all the treatments for MS that I have taken over the years this one seems to have the mildest side effects, for me.  This is fantastic news.  I am so hopeful that this medicine will slow or even regress some of the symptoms I have experienced over the last 10 years.  If you are curious about Tysabri, just Google it and read away!

Where is God for me in all of this, well, I guess I would have to say sitting in the chair next to me.  He appeared as an 80 year-old man who was recovering from Chemo treatments with iron infusions.  He looked at me and said, “is this your first treatment, I only ask because you look so healthy”.  I told him I was very healthy and that I was not there for chemo…His face relaxed and he smiled at me.  We sat and chatted about life, love, and family for about an hour…He was genuinely kind and had such gentleness about him it made the time pass quickly.  He touched my arm before leaving and told me he knew this was going to work for me.  Don’t you just love it when God places someone in your path that touches and encourages you.  I don’t know if I will ever see him again and I cannot remember his name however I will not forget the hour we spent together!

Yeah!  I went back to work today!  It was amazing to be back at my desk with one of the most beautiful views of the Rockies in Golden Colorado. I work on the third floor of a building in Golden and my desk faces west looking directly out at every approaching storm system as it builds, rolls, and then falls over the mountains!  It is truly awe inspiring at times.  There are floor to ceiling windows along the entire wall in front of my desk!  It is like watching an artist create an oil painting, throughout the day it changes, evolves and becomes something different.  Each time I take a moment to look up from whatever I am working on…I am reminded of the awesomeness of our planet! 

Besides the view, I love where I work and the people I am blessed to work with are just genuinely nice!  They are all deep thinkers and look at the world through a very analytical lenses…they are truly assessment and research people who love to ask questions about questions…It is a place I get to learn and grow everyday.  I am learning how you ask a question is as important as why you ask the question…yesterday, I learned that if you make a statement that something correlates to something else there is a computer analysis that can confirm or deny your statement!  I love this stuff…GEEK GIRL is back!  Wahoo!

Oh, on the family front, the bribery is working!  The girls not only fed and walked the dog, cleaned up their messes, went to Yoga, but offered, yes I said offered, to help start dinner!  Holy cow, is this divine intervention?  I am excited but not convinced it has only been    `1 three days for goodness sake however, I am optimistically hopefully that we have found a way to communicate with them….always and forever the optimist, that’s me!

As for time with God…I was blessed in so many ways by the beauty of people, our planet, my husband, and my children that I was granted a peaceful nights sleep filled with dreams and sometimes that is enough…

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