And the results are in...

I got a call from Dr Banks this morning with the MRI results.  I think it was good news!  Since my last MRI, which was almost a year ago, she said I only have one new lesion on my spine on the right side.  She also told me that none of the other previously existing lesions were enhancing.  Bear in mind that my last MRI was last April/May and I didn’t go on the disease modifying medication until mid July... So I am not sure, but I assume that the new lesion could have possibly presented itself before I even got on the meds?

Regardless, it was a relief to me to hear that there was only one new one.  I feel like that makes the past year somewhat successful.  So with this information the next question was how do we want to treat the symptoms I’m currently experiencing.  There is another medication I can go on to help with the tingling/numbness/sensation issues, but I decided I would try oral steroids first and see if they help at all.  

I absolutely hate steroids.  Oral are better than the IV ones for SURE, but I still hate how they make me feel.  I feel on edge and easily irritated, my heart races constantly and I sweat like crazy.  I get heartburn and don’t sleep particularly well.  I hate them!  But it's only 12 days and they could help, so I'm gonna give it a shot.  I honestly don't want to have to go on another full time medicine yet if I don't have to.  Let's hope the next 12 days fly by!  

MRI #3...

Today was my MRI.  I was in a terrible mood with the anticipation looming over me all day, but at least I can keep busy at work.  Shout out to the hubby for taking the time out of his work day to go with me.  I always offer to get someone else to drive me, (because I'm drugged up on Xanax), and he always declines and arranges to do it himself.  It is definitely a comfort to know he is there.

Truth:  I think the caregivers of people with MS have it just as bad if not worse than the people who actually have MS.  When we were at the MS Lifelines event last week one of the presenters asked us to raise our hands if we had MS, then proceeded to tell us that everyone in the room should raise their hand because if you care for someone with MS you "have it" too.  So grateful for my sweet hubby and his patience with me.

I made it through the MRI with no issues today.  If you are scared of MRI's like me, here is what I have learned makes it easier:

1. Wear very comfortable clothing... nothing restrictive.  Think PJ's or sweats.  (You can't wear anything with metal or any metal accessories.)
2. Ask your neurologist for two Xanax.  You can take one an hour before it's scheduled at your house and the other right before you walk back there at the hospital.  I love my neurologist for doing this for me.
3. Don't look at the machine when you walk in.  Just ignore it.  It's not there.
4. Ask for a cloth or something to cover your eyes.  Get that immediately, before they put in the IV, (if you are getting contrast), or place the piece around your neck.  The best thing about the cloth over your eyes is that even if you do open your eyes, all you see is bright light, so it gives you the sense that you are in a huge lighted space.  Just don't move and ruin the perception ;)
5. If they offer you a blanket, take it.  There is plenty of air flow so it's not warm in there and the blanket just provides an extra sense of security.
6. Make sure they give you a "panic button".  Just having that sucker in your hands makes you feel better.  Chances are you won't need it.  
7. Close your eyes and let yourself drift away.  If you want to pass the time, try and think of what songs would play along to the beats in your head.

My 40 minutes actually flew by today.  I'm grateful to the staff at Lone Peak who are always so kind.  A smile, even from a stranger, goes a long way to relieve my stress.  

Good days and bad days...

Well, the positive side of me is grateful that I have actually had a pretty good couple of months. However, the past week or so I have felt a little crappy.  I have been pretty tired, I've had that pesky zinging down my spine again and I've had increased discomfort/numbness in my left hand.  I've had a hard time getting to sleep and staying asleep at night due to body achiness, (especially my legs), and I've woken up with some numbness in my right hand during the night on a couple of different occasions.  I don't know if it is just the change in the weather or what!

I ended up caving and calling my neurologist Tuesday afternoon.  I don't like to call her unless I've been feeling pretty bad for a few days because first of all, I don't want to be a pain in the butt patient who calls for every little thing, but also, I am terrified to be put back on steroids or have to go have another MRI or who knows what else done.  They were able to give me a Friday morning appointment which was perfect because I had already arranged to take Thursday off for Dee's birthday celebrations and Friday off to recover. :)

My biggest priority this week was to get through Dee's birthday yesterday with as much energy as I could possibly muster and as little health interruption as possible. It's become tradition that I take the day off work so we can have lunch together and then shop at City Creek.  I realized a couple of weeks ago that this is the first year she is working full time so we probably wouldn't be able to go so I didn't say anything, but then bless her heart she went ahead and arranged to take it off.  (I'm not sure if the time together is more of a present for her or for me, haha.)  We had the funnest day!! I was up at 6:30am to decorate the house and run and get balloons before she woke up.  We had a yummy lunch and made sure to hit up our regulars, Alex and Ani for birthday jewelry and H&M for birthday clothes. After she was all shopped out we met Mike Sr & Mike Jr for her birthday dinner at Rodizio, and then had cake at the house with the grandparents.  I was absolutely exhausted by the end of the day but it was TOTALLY worth it.  So much fun.

This morning it was back to reality.  I went in to see Dr Banks nice and early at 8:45am.  I appreciate so much the time she takes with me to really listen and find out what is going on.  I never feel rushed, she asks so many good questions and then gives me choices as to what our next steps can be.  She did say she wanted to do another MRI to see if there have been any changes so that is set up for Monday after work.  After our discussion and when given the choice, I elected to wait until after we got those results before starting any kind of medications.

I will admit that I do feel super anxious about the MRI, but I keep reminding myself that I have made it through two of them in the past and Dr. Banks gave me a prescription for a couple of Xanex to take right before going in.  At least it will be all over with in a few days and I should have some results back by the end of next week.  Waiting and the anticipation is definitely always the worst part.  Here's to hoping it's just the weather changes giving me grief. :)

Happy Birthday Sweet Dee...

Dee's original due date was the beginning of March.  Just like her brother she blessed me with carrying her for two extra weeks, so she was a good size baby weighing in at 9lbs, 2oz.  Although we lived in Silver Spring, Maryland where there was a major hospital just a couple of miles away, our insurance would only cover delivery at Shady Grove Hospital which was 20 miles away.  They scheduled us early in the morning to get induced, so we got to sit in DC metropolitan area rush hour traffic for well over an hour.  Good thing I wasn't in labor or she may have been born on the freeway! :)

Back in those days, (boy do I feel old for saying that), insurance only covered one night in the hospital, so I delivered just after 2pm on March 22nd and they were already preparing to discharge us well before noon on the morning of the 23rd.  I was absolutely terrified.  I was 21 years old, had gotten no sleep all night as they were so over full that I had been placed in a room in the pediatrics ward, and I had this new baby that was literally coughing up blood an hour before they kicked us out of the hospital.  However, despite all that, I remember sitting with her in the back seat on the way home and just feeling a sense of immense happiness.  I knew immediately that she was going to be a big blessing in our lives.

Dee had pretty bad colic for the first six months of her life so Mike and I took turns rocking her in the rocking chair for 1-2 hour increments while the other slept for a bit every night.  Honestly, it was a miracle we ever had another child after her.  She cried ALL.THE.TIME. but luckily, since she was our first, we didn't know any better and pretty much just thought that was normal.  (Thank goodness for lots of family love and support.)

If you don't know Dee, I sincerely feel sorry for you.  To know her is to know that your life is better because she is in it.  She has the most genuinely beautiful spirit and brings so much fun and laughter to those around her.  I've honestly never met anyone with so much compassion in their heart.  She's always doing things for others whether it's taking them out to get a Swig because they had a bad day, dropping them off treats, or making sure they have someone to sit with so they don't feel alone.  She is also one of the most forgiving people I know... almost to a fault.  (I've definitely wanted to punch a few of her less admirable acquaintances in the face on more than one occasion, but she is a MUCH better person than I am.)  She has a heart full of Christlike love.

Dee graduates in just a few weeks from the U of U and I couldn't be prouder of her.  She has made a lot of sacrifices the past few years working and going to school full time while trying to juggle her church assignments and social life.  She is a constant example to me of enduring trials with grace.  She is the kind of person who pushes through her toughest times by serving others with a smile on her face even when she is fighting battles that no-one knows about.  I love and admire her so much.  She makes me want to be a better person.

Happy Birthday sweet Dee.  I'm so blessed to have you in my life and I truly love you to pieces.

Getting to know MS & my immune system better...

We had the most amazing opportunity to attend another MS event put on by MS Lifelines tonight at the Cheesecake Factory in Downtown SLC.  They flew in Dr. Daniel S. Bandari who has been recognized as one of the top neurologists in the nation specializing in multiple sclerosis.  He is the Medical Director and Founder of the Multiple Sclerosis Center of California & Research Group located in Newport Beach, California.  He is also a Clinical Assistant Professor of Neurology and Neuro-immunology.  (You can read more about him here if you are interested:  MS Center of California.)

What a fantastic opportunity to be more deeply educated on the immune system and it's impact on MS.  We learned about what MS is and how the immune system protects our bodies and plays a distinct role in the development of MS.  We learned about different treatments and how they modify the immune system to limit the progression of disability in patients with relapsing MS.  We also learned about things we can embrace to live our best life possible while battling MS and some of the things to avoid.  It was incredibly enlightening.

No two cases of MS are alike, but there are some general things that Dr. Bandari has found help the majority of people with relapsing MS.  Mike took good notes:

• Diet:  Low fat, low carb, low sodium, high protein.
• Vitamins:  Take a multivitamin, vitamin D3, B-complex, and your omegas daily.
• DON'T take any extra immune system building vitamins like vitamin C.  These are bad for MS.  
• Exercise:  He said if you do everything else and don't exercise you may as well have done nothing.

I was deeply encouraged by Dr. Bandari's advice.  We have been trying to eat low fat, low carb, and high protein during the week since the beginning of the year.  I drink a protein shake for breakfast, have fruits and veggies for a snack, a healthy choice meal for lunch, another protein shake on the way home and then a sensible dinner.  I have told Mike over and over that I feel wonderful when we eat that way and I get through a pretty strenuous work week with few issues.  The interesting thing is that we allow ourselves "treats" over the weekend, and I never feel quite so great on the weekends!  Granted, some of that is because I'm exhausted from the week, but I do think what I eat has a direct bearing on my feeling of well-being.

I already take a multivitamin with D3 & B-complex as well as flax seed daily and know that the days I accidentally miss those I have a lot less energy.  I didn't know that I should stay away from taking extra immune system building vitamins outside of my multivitamin so I will definitely keep that in mind going forward.

Exercise has become a habitual part of my day since the beginning of the year, (riding my recumbent bike), and I have genuinely started to love it.  I did 11 miles in just over 40 minutes the other day, which was a record for me, and I feel so much stronger!  I feel so good when I exercise, and it improves my mood substantially.  Listening to Dr. Bandari talk about all these things encouraged me to keep pressing forward.

One of the benefits of going to these programs is also to meet other people with MS.  I still struggle with being social at these events, so I always pick a table where there is no-one else sitting when we first get there.  Tonight we happened to pick the table that the MS Lifelines Ambassador, Dr. Bandari and one of the program organizers sat at.  

When the program was over and we were eating dinner, the MS Lifelines Ambassador, Ted K., started talking to Mike and I.  He has had MS for over 20 years and goes to events like these to tell his story and give encouragement to people living with relapsing MS.  He was such a sweet man and very personable.  He took a genuine interest in our story and our struggles.  He sat and talked to us for over 30 minutes and gave us some wonderful advice... the biggest piece being to put the shot under one of our arms for a few minutes before I get it.  He said bringing it to body temperature helped it not sting quite so much.  The shots have been pretty painful for me, so I was eager to try this.  I happened to have one scheduled for this evening, and lo and behold, after Mike warmed it up under his arm for a couple of minutes, I barely felt it!  We will try this again on Friday for SURE!

Ted was a hoot.  He spoke right before Dr. Bandari and told us that his best piece of medical advice, (as he is not a Dr.), was to never take a sleeping pill and a laxative at the same time. 😂😂😂 I was so grateful for this compassionate man who took the time to talk to us and empathize and share with us.  One of the blessings of MS has been the truly wonderful people I have had the opportunity to meet.  I only hope one day I can be such a blessing to others.

Dr. Bandari gave us a few websites that he recommended we get our information from.  He reminded us that there is lots of bad information out there on the web, but these websites are reputable:

NMSS – http://www.nationalmssociety.org
MSAA (Multiple Sclerosis Association of America) – http://www.mymsaa.org
MSF (Multiple Sclerosis Foundation) – http://www.msfocus.org
CMSC – http://www.mscare.org

Thanks MS Lifelines for another amazing evening. :)