My first home health experience...

No sooner had we walked through the door from the neurologist yesterday than we heard a knock at the door.  It was a pretty large delivery of medical supplies and refrigerated IV steroids.

I then got a call from a home health company that told me they would be sending a nurse today to get me hooked up with an IV and started on the medication. The irony of all this is that my hubby actually does home health, (for physical therapy patients), so it made me smile a bit thinking that I was stepping in to a little bit of his world.

The nurse that came to train me was in a word, adorable.  I would say that one of the most important qualities a home health professional can have is a sweet, compassionate personality.  In my case I felt nervous, unsure, and sick to my stomach, and her communication with me and how comfortable she made me feel during the visit was what made all the difference in the world.  (I can now totally see why my hubby is so dang good at his job and why his "patients" love him so much.)  The knowledge the person has is a huge part of it, but the persons behavior, disposition and character is what ultimately puts the patient, in this case me, at ease.

I had originally thought that I was going to have a nurse come twice a day to administer the steroids, so when I found out I was going to have an IV in me for three days and do it myself, I was less than enthusiastic about it. However, by the time she was done with me, I was sure I was going to be able to survive the experience, even with a needle sitting stuck in my arm for a few days.

Mike wasn't home when the nurse came, but luckily Dee was.  (Well lucky for me, she didn't think it was so lucky.)  So Dee was the one that the nurse trained and had administer the first dose.  She taught us the acronym:  SASH.  Saline, Administer, Saline, Heparin.

First we injected 5 ml of saline in to the IV, then we hooked up the medication (Solu-Medrol) which took 30 minutes to administer, then another 5 ml of saline, then 3 ml of Heparin.

I was so impressed with Dee.  Though she initially gave me a bit of a blank stare when I asked her to come learn how to do it, she didn't complain at all, she put on a brave face, and she did the whole thing with the nurse watching.  I continue to be humbled by how wonderful and patient with me my family are right now.  I just love them so much.

So I have to do this every 12-13 hours for 6 doses.  Since this one was at 3pm, the next one can be no later than 4am tomorrow morning, so it will definitely be an early morning for me before work, but hey-ho.  If this helps give me feeling back in my arm and hand or helps me to feel better in any way, it will be worth it. :)

When life officially changes...

So, today I am officially the face of MS.  I had a very overwhelming visit with my neurologist this afternoon.  Initially I had told Mike not to come with me because he has already come to SO MANY things that interrupt his work day.  However, by the end of the visit I was so glad that he did come, I would have never remembered everything she told me by myself.  My neurologist's name is Dr. Banks, and she is wonderful.  She spent over an hour with me and Mike going through an insane amount of information today. I have several packets of information I need to read about different medications I can choose from to stop it from progressing.  (They are all shots that I will be giving myself for the rest of my life, go figure.  The girl who hates needles will be taking 3 shots a week.)  I guess I should start reading up on MS now that it is "official".  There is no more denial.  It still doesn't seem real, but I am coming to terms with it.

I have decided MS = Mighty Strong.  It has been quite overwhelming to think about it and I would be lying if I didn't say I have genuine fear about what the future holds, but I am also aware that things could be much worse.  I'm not dying of stage 4 cancer, I don't have a brain aneurysm, both things that dear friends of mine are battling currently.  I have a beautiful family, we have a wonderful puppy and I live in my dream home.  Mum and Dad have literally moved around the corner.  I have amazing medical benefits at work.  Life is still good, it's just going to be different now... forever changed, really... but I can get through this.  There have been a lot of breakthroughs in the research and they are hopeful of finding a cure one day.  In the meantime, I will do what I can to be a physically and mentally strong person and live the most normal life I can for both me and my family. :)

I came across this quote today when I was looking for a bit of a lift.  Isn't it amazing how you can read the words of the apostles that were actually spoken years ago and they can become relevant to you and strengthen you right now?  I just love Elder Holland... I need this quote in my home somewhere so I can read it daily!

Just a quick rundown of some of the symptoms I have experienced thus far for my own records:

• Numbness in the left foot and leg, spread in to the left side of the trunk of my body and then my shoulder, arm and hand. (Foot and leg started in January, trunk, arm and hand started end of February.  The foot and leg cleared up with the steroids the end of February, beginning of March.  The trunk has subsided.  The arm and hand are still numb.)
• Heaviness in my legs when walking (Beginning of March, only lasted one day.). I also felt like I had lumps (marbles) in my foot when walking on it (left side), went away after a few weeks.
• Stomach issues.  I'll spare you the details.
• Sheer exhaustion.  This started earlier last year.  I literally thought like I was just a lazy bum.  I couldn't function well later in the day and was falling asleep early in the evening.  I still have this, but I am starting to manage it better with energy vitamins that I take mid-day and caffeine.
• Slightly blurry vision sometimes.  Also, there have been a few occasions I have woken up in the morning unable to physically open my left eye.  I open it with my hand and then it works fine, but it is a very strange sensation.  
• The most annoying zinging down my spine.  Whenever I look slightly downwards, I feel a vibrating, electric shock type sensation go down my spine in to my groin area.  This started out as just a slight zing in the neck.  It has gotten worse over the past few months.  Now it often radiates across my chest and down my arms too.  Heat definitely makes this 100 times worse.  I hate Utah summer.
• Slight balance issues.  If I look up and over I lose my balance.  My neurologist had me try and walk a straight line heel toe, and I was unable to do it well.  I'd probably not pass the walk and turn sobriety test. :)
• I lost feeling in my RIGHT arm and hand temporarily.  I was just laying in bed and I suddenly felt this zinging down my right arm and it was like a creeping numbness that went from my shoulder down to the tips of my fingers.  Hard to explain.  Then it felt like it was pulsing, like waves were going down my arm in to my hand.  This went on for about 30 minutes, then it tapered off.  I could feel it if I dropped my neck after that, but after a few hours it was gone.  

Who came up with the phrase, "lumbar puncture" anyway?

I'm not going to lie, it's been a hell of a week this week.  I had a lumbar puncture, (also known as a spinal tap) on Monday.  (I personally think that is the WORST name for a procedure... just hearing that phrase puts terror in my head).  I spent the rest of the day and night flat on my back watching "Criminal Mind" re-runs just as I was instructed, and felt completely fine.  However, early Tuesday morning I started having some pretty intense headaches in the back of my neck, up in to my head, so I also spent Tuesday laying flat in bed while getting caught up on some work.  Wednesday, I was feeling a little better, so I had Mike drive me to work, but the day was pretty miserable... Sitting was pretty uncomfortable, I had a blanket on the floor of my office that I kept lying down on intermittently during the day, but the headache was not leaving and after Dee picked me up I went home to lay down for the rest of the day AGAIN.

Thursday was the day I literally thought I was dying.  I could not lift my neck at all... I could only stare down at the floor and the pain was so intense I actually thought death might be better.  I would feel relief when I laid down, but even getting up to walk to the bathroom reduced me to tears.  I finally called the Dr because surely this was not normal, and they sent me back to the hospital for a "blood patch".  Bless Dee's heart she rushed home from work and picked me up to get me there within the hour.  I could barely function at this point, couldn't even sit properly and had difficulty walking as I had to keep my neck hung due to the pain.  I would like to take this opportunity to suggest to St. Marks that they have a chair at the registration desk. :)

After what seemed like forever in the waiting room, they finally got me back on a hospital bed, (laying down helped relieve the pressure), and then they promptly hooked up the IV and got me back for the procedure.  From what I understand, a blood patch is basically having the same procedure over again, but they go one less layer deep and have an IV in your arm ready with your blood.  Once they get the needle in your back, they pump your own blood from the IV in to your spine to patch up the hole. While I was definitely scared of having it all done again, I was in too much pain not too.  All I can say is that it was the most miraculous thing and we are SO blessed to live in a time of modern day medicine.  Within just a few minutes of the procedure being complete, I could sit up, stand, walk and talk with no issues, and felt completely back to normal.  I was seriously so grateful I literally cried.

I can't not write enough about the amazing staff at St. Marks Hospital during this second procedure. The nurse that prepped me was adorable.  Her name was Tami.  She just talked nonstop to Dee & I, keeping us laughing and deflecting our minds off of what was going on the whole time.  There was an older male nurse or CNA who was wheeling me around who was just the sweetest thing... he kept encouraging me and telling me I would feel better soon and calling me "dear".  The guy who performed the procedure led me through every step of it, letting me know what was coming and how soon it would be over.  Finally, there was a little nurse in with me during the procedure whose face I never saw, but she literally held my hand and rubbed my head through the whole thing, telling me it would be OK and that I was almost done.  It was the best experience.  I have never felt so well taken care of anywhere.  Tami then took care of me again during the recovery.  She got Dee and I Diet Cokes over pebble ice and different kinds of cookies, telling us we had to have a "cookie party to celebrate."  I can't even think about this experience without tearing up, because the people there at St. Marks Hospital were so very kind and loving. I think that has been one of the things that has touched me the most, is the genuine compassion i have felt from the people who have assisted me.

I also can't say enough about my Dee this week. She has made dinner daily, helped me emotionally and physically, and she dropped everything to come to this appointment because Mike had already taken so much time away from work to take care of me.  I'm so grateful for my family.  I'm so grateful for their support.  I could not go through all this without them.  Sometimes it is overwhelming to me already how much I depend on them.  I have an incredible desire to be stronger and figure out how to function better so I'm not putting too much on their shoulders.  My hope is once I get some medicine, things will improve.

The Beginning...

I don't remember when I officially started feeling different.  I know that during Thanksgiving of last year I thought something was wrong with me because I couldn't seem to get enough sleep.  I was coming home from work exhausted and falling asleep by 7:30/8:00pm each night and this had been going on for a couple of months.  Mike thought I was over stressed at work and we had discussed me possibly looking for another job that was less strenuous on me, even if it was for the same company.

Christmas I continued to struggle with energy and feeling like I was just a lazy piece of crap. Decorating the house, making treats for the neighbors, going to see lights... everything was hard work for me.  More often than not I would get home from work and collapse in to bed for an hour or two. Even having to stop at a grocery store made me cringe.

Then in January I started having some neuropathy in my left leg and foot.  If you don't know what that means, it is a fancy word for numbness, tingling, weakness and sometimes pain from nerve damage, usually in the hands or feet.  I originally thought it was plantar fasciitis. I had a painful spot in my foot and when I wore better shoes it seemed to subside a bit, but if I wasn't wearing shoes it felt like I was walking on marbles.  This completely frustrated me because I was trying to walk daily to get my energy up and I couldn't because my foot would get so sore.

Hubby and I decided we needed a long weekend to reset and booked a trip the end of February to Zions National Park.  While we were there, sleeping on the most uncomfortable bed I had ever slept in at a hotel, my left arm, side and hand started feeling numb too.  I thought I had just slept on it wrong at first.  My back was sore, the bed was lumpy and hard... so while we had a wonderful trip, doing some light hiking and lots of good eating, we ended up leaving a day early simply because the bed was horrific and my body wanted a good night sleep back in my own bed.

When we returned home, my lower back was sore for a bit, and the neuropathy continued to creep across my whole left side.  The biggest frustration for me was that it was starting to affect my piano playing, especially with my left hand runs, so I finally made an appointment with the my nurse practitioner. She put me on a quick, strong dose of oral steroids and within a few days, the feeling was back in my leg and foot, but my hand and arm were getting worse.  Additionally I had started getting this horrible "zinging" sensation in my spine whenever I pushed my head downwards.  It felt like an electric shock going all the way down in to my pelvic area.  Sometimes it would shoot down my arms too... a very scary sensation.

My nurse practitioner was out of town for about 2 weeks, so I made a follow up appointment for as soon as she got back, and she put me on a second dose of steroids and set me up for an MRI of my neck with the thought that it was maybe a pinched nerve or a herniated disk causing me all this grief.

I had never had an MRI before, so to say I was extremely nervous would be an understatement. I am pretty claustrophobic, so they gave me a valium to help calm my nerves, but when I walked in there and saw how small the space was that they were going to squeeze me in to, I was still a little panicked.  The staff at Lone Peak Hospital were wonderful. They placed a panic button in my hand that I could squeeze if I couldn't take it any longer, they put earplugs in my ears to block out some of the drumming noise, but they also put a washcloth over my eyes so that I didn't see anything while I was being moved in to the space or the MRI was taking place, and honestly, THAT was what made ALL the difference.  All I saw if I opened my eyes was bright light that gave the affect of having all the space in the world.  The drumming didn't bother me at all.  I guess that is a blessing of having a drummer for a son. :)  I just found myself imagining him playing the drums and following along with the beats.  It was all over with pretty quick, (I did catch myself snoring at one point), and it would be just a few days wait for the results.

The waiting time is the worst.  We were pretty sure that it was just a pinched nerve or herniated disk, but as usual I had looked things up online, freaked myself out and was 90% sure I was dying of something.  In fact... in reading about ALL my symptoms that I had had over the past few months, I got a pit in my stomach when I read that I had experienced just about all the symptoms of someone with MS! To know me is to know that I always think the absolute worst of any situation, so my dear hubby helped talk me down off the ledge I had perched myself on, after all, M.S. is pretty rare... no way that was what it was. 

Well, finally my nurse practitioner called with the results, but unfortunately it wasn't the news I was hoping for.  There was no pinched nerve.  I had some spinal stenosis, which is narrowing of the spine at the top which could cause some of the neuropathy, but what they were most concerned about was that there were also a few lesions on my spine, one of which was 9mm long, which was in her words... "characteristic of MS".  She immediately put in a referral for a Neurologist for further testing and diagnosis, and several weeks later I was set up for an MRI of the brain.  Another bit of a scary experience, but this time they gave me two xanex which totally helped me calm down.  (This MRI included dye pumped in to my brain through an IV, so needles and small spaces... the perfect anxiety inducing combination for this gal! :)

I had to wait 8 days to hear the results of the second MRI which was a little frustrating, but after having met with the Neurologist and giving her a rundown of all my symptoms, we were hoping very much that this was just a one time infection that had "tricked the body".  Not so lucky.  They found some vague white matter near the ventricles.  I'm not going to lie, her words over the phone punched me in the gut a little... "This is M.S." That was today, June 15th.  She then went on to tell me that the next step was to do a lumbar puncture so they could do a "cerebrospinal fluid oligoclonal band test".   Basically, it looks for inflammation-related proteins in the cerebrospinal fluid that are not present in your blood.  It will give us the last piece to the diagnosis.

I'll admit that I've been in a bit of denial throughout this process.  Even as of today, I haven't done a ton of research on MS.  I just keep telling myself that if there is any small shred of possibility that I DON'T have MS, then I will just hold on to THAT.  So now, I am hoping that the results of the lumbar puncture show it isn't MS.  I'm not losing that hope.  The lumbar puncture is set up for this upcoming Monday.  I'm scared as hell of that procedure so I've already had a blessing.  I then have a follow up with my neurologist the following Tuesday to go over the results.  Here's hoping for miracles!

Ironically, I came across this meme today which I haven't been able to stop laughing about...

Hey life, I don't want your damn lemons!!!! :)