Monday, January 30, 2012

Growing Up

Thursday our youngest child turned 6 years old.  I can't believe how time has just flown by.  We celebrated her birthday on Saturday at the local roller skating rink. She loves to skate and I couldn't talk her out of doing the party anywhere else.  So we sent out invitations and almost every person she invited came to the party.  There were at least 20 kids and 10 adults.  The party was crazy because kids were running around everywhere and out on the rink.  I couldn't keep up with everybody.  By the time we got home my feet hurt so bad and I felt like I literally couldn't move.  I am beginning to loathe MS.  It wasn't long ago that I could go all day and nothing would affect me, but now it's like I can't do anything for more than a few hours or I am just so dreadfully tired.  IT SUCKS!!!!!  I want to have my life back! Just sayin...

Monday, January 23, 2012

Basketball Craziness

It seems strange to me that I used to be able to go to my daughters' basketball game and not feel tired at all.  For the last year it has been a very tiring event.  Don't get me wrong I love going to the games and watching both of my daughters play, but it literally wears me out!  Thank you MS!  It could be all the screaming I do also...haha.  I am not a quiet person when it comes to my kids sporting events.  I am the parent constantly cheering my kids on that some people want to smack.  I can't help it though I am very verbal and outspoken! lol Maybe if I toned it down a bit I might not be so tired....but then it wouldn't be any fun.  I can always take a nap and get my energy back right?! 

Upping the dosage

Haven't been on here in a few days because I have been sick.  Friday I had to up my dosage with the Betaseron. I am feeling much better now thank goodness! Getting used to this medication is a doozy.  I wish it was a pill because I hate these shots!  On the bright side I am noticing the medication is helping with the MS because I am slowly getting my energy back.  That is awesome!  I am still tired a majority of the time, but not to the point I just can't do anything at all.  I know that it is going to continue to get even better and I can't wait to feel like my old self again! Taking it day by day but I am confident things will continue to get better. God is certainly looking out for me!

Friday, January 20, 2012

Fatigue is Taking Over!

For some reason I am so tired today.  I was feeling fine yesterday and now today is like the complete opposite.  Yesterday I cooked and did some homework, amongst other things, and I was feeling fine.  Then when I wake up this morning I just don't want to move at all.  It's like my whole body is tired and all I want to do is sleep.  I took a nap this morning and when I woke up even my stomach was hurting. So I ate some chicken noodle soup, because it usually makes me feel better.  Not today, it made me feel even worse so I had to lay down again.  I don't want to get up for anything.  Sometimes I just don't understand.  I want to be able to do things I have always done, but I just don't have the energy.  I just want to curl up in my bed and not get up because even the smallest things make me tired.  This is not how I envisioned my life.

Wednesday, January 18, 2012

The Dreaded Teeth Cleaning

Today I had a dentist appointment.  I always make my appointments  at the same time as my 2 girls' because it's just easier that way.  Both of the girls had their teeth cleaned with no problems and then it's my turn.  Something always seems to hurt.  Today my gums were so sensitive that they had to numb my gums.  My dentist said sometimes the MS drugs can cause your mouth to be very dry, but I haven't had this problem.  My gums are already sensitive and I brush with fluoride every day, but this is a lot worse. This is very unusual so I'm wondering if it's the Betaseron?  I have a headache now and my gums are throbbing.  If it's not one things it's another right?! 

Tuesday, January 17, 2012

What Not to Say

Don't you hate when people say things to you like this?  Well it does me!  It makes me down right angry sometimes.  If you have never walked in my shoes then you don't know what I'm feeling!  I know that I should just ignore the comments because they just don't understand, but sometimes it's REALLY hard.  Sometimes I think, "Do you hear what you're saying?"  If I had a magic wand and could make my MS go away, don't you think I would do it? HECK YEAH I WOULD! Unfortunately this isn't a Disney movie and I live in the real world, so things don't work that way!  So if my hand accidentally winds up on the backside of your head...it's not my fault...it's the tremors...OOOPS....HAHA.  That's my soapbox for the day!

Monday, January 16, 2012

Changing Diet

Been reading a lot of information about the Diet of people who have MS.  The Swank Diet is very popular as well as a gluten free diet.  I don't know if I can give up all my bread products though.  The Swank Diet seems okay except for the bread thing. I think my body might go into shock if I completely cut the bread products out right away...lol.  I have been eating a lot more fruits, vegetables, lean meats and cut out a lot of the prepackage food for myself.  The whole family already drinks skim milk and eats low fat cheeses so that I don't have to change.  It's just getting used to all these vegetables because I am not a veggie lover!  But do I want to be healthy and live longer or not be healthy and let this MS MONSTER take over?  I choose healthy!  So tonight we tried turkey burgers, which I grilled on the George Foreman grill, and added a side salad.  Surprisingly my kids loved the turkey burgers! The youngest said she would eat them every day...I thought she mistaking this for "Cat in the Hat."  So now I might try the soy burgers Dr. Oz has been talking about.  I will attempt to step out of my comfort zone a little more.  I told my girls next time we would have sweet potato fries (Dr. Oz) with the burgers and they screamed "EWWWW."  Well I'll sneak it in there...

The Diagnosis

For the past five years I have had a mysterious illness which slowly began to take over my life.  After the birth of my youngest daughter I developed a severe case of postpartum depression and then severe migraines.  My doctor treated me for each, but the migraines became increasingly worse.  I was then sent to a neurologist who diagnosed me with Chronic Migraines and I began to take a daily medication to reduce the migraines.  This worked for awhile but soon began to become increasingly worse.  On each CT-Scan the results were normal.  I then began to experience other symptoms such as numbness and tingling of the hands and feet, blurry/double vision, and severe fatigue.  Again, the CT Scan showed normal and all blood tests were normal as well.  So, the doctor sent me to physical therapy for my neck and back.  This began to help decrease the migraines.  Things began to get better and then seemingly overnight the migraines returned with a vengeance.  This time the doctor sent me to physical therapy for the neck and back.  Again after awhile things began to get better, but this did not last for long.  In January 2011, I became very sick, missing endless days at work.  The CT scan and blood work still came back normal.

In April, 2011 I finally had to quit my job because I was just too sick to work.  After a few months at home I started feeling a little better and I attributed this to less stress.  Then in August, 2011 I had a migraine that lasted over 15 days.  After several doctor visits and trips to the ER, I was admitted to the hospital.  I was told I had  Status Migrainosus which are prolonged, resistant attacks resulting in incapacitation.  I was treated with DHE and after a few days of treatment the migraine began to subside.  I was sent home with a few prescriptions including one for Vistaril.  I was told to take the Vistaril every four hours for the next few days and then slowly taper down to one pill a day.  After I had taken a few pills I noticed that my face was becoming numb and swollen. I called the neurologist frantically and was told to stop taking the Vistaril immediately and take Benadryl to counteract the effects of the Vistaril.  The next day I began having trouble breathing and and it felt like I was having a heart attack along with a terrible burning sensation in my chest and my left arm was completely numb. I called the neurologist again and was told to go the ER right away because I was having an allergic reaction to the Vistaril. I immediately picked up the phone and called my husband and said "I have to go to the ER now!"  As soon as I got to the ER I was put on a heart monitor and given pain medication for the pain.  I was also given a GI cocktail for the burning sensation in my chest.  Then  I was sent for yet another CT-Scan and again it showed nothing unusual.  I was then admitted to the hospital. In the morning my doctor came to see me and by this time the swelling in my face had begun to subside. In addition to the allergic reaction to Vistaril, I also had a severe case of acid reflux and Costrochondritis. I was sent home to recuperate.  After a few days I called the doctor because my chest felt like someone was sitting on it and the pounding in my chest still had not subsided.  I was told the only thing he could do was prescribe a muscle relaxer and that I would need to rest until the muscles in my chest healed.  I was in so much pain and it hurt to even move. I began researching on the Internet and found many people with Costrochondritis take a few months to heal.  This was not the news I wanted.  I did exactly what the doctor said and by the middle of October I was starting to feel much better.

Things were starting to look up until I woke up on the morning of November 17, 2011.  I awoke to both of my arms and hands numb. I thought I had slept wrong and that the numbness would subside. The numbness subsided but only in my left arm and hand.  So when Monday rolled around I called the doctor.  Multiple blood tests were run and I was given a steroid shot.  I was told it was probably a pinched nerve in my neck and that I needed to come back the next week if I wasn't better.  Of course the next rolled around and my arm and hand were still numb and tingling so I went back to the doctor.  All of my blood tests had come back showing normal except for the Iron test which showed I was anemic so I was put on a prescription iron pill and 5 days of steroids. Then I was sent for an MRI of my neck.  I think I wanted to cry because for years I had been asking for an MRI instead of a CT-Scan and they would not send me because everything showed normal.  After the MRI I tried to stay positive while waiting for the results, but the waiting just made things worse.  Finally the doctor called and I was told they had found a lesion on C2 vertebrae and that I would need to see a neurosurgeon. Finally, I had proof something was wrong and I was not crazy! There was something wrong with me!  However, when I saw the neurosurgeon I was informed the lesion could not be removed because it was inside my spinal cord and that I would need to have another MRI including the brain this time. The possible diagnosis could be MS or Lupus. Then I would need to see a neurologist who specializes in this sorta thing.  Well this is easier said than done because most of the neurologists here do not take Tricare anymore.  Having free health care with the military is a blessing but sometimes there is a price to be paid!  By the next week I still wasn't better and no appointment.  In fact I was digressing because now my right foot and leg were numb and tingly.  On December 19, 2011 I went to my doctor again to report the new symptoms.  That afternoon I had an appointment to my regular neurologist, for the migraines, and my doctor told me to talk to him and see if he could push things through.  When I got to the appointment my neurologist examined me and told me the best thing to do was to just admit me to the hospital and run a battery of tests.  The neurologists themselves may not accept Tricare, but the hospital does and they all work rotations in the hospital.  Problem solved.

So on the morning of December 20, 2011 I was admitted to the hospital and the testing began.  I thought they were going to drain me of all the blood in my body. It seemed like every 30 minutes they came back in to draw more blood.  Then the next day I was sent for a 3 hour MRI of the brain, neck, and spinal cord.  When I returned from the MRI a doctor was waiting to perform an LP (Spinal Tap).  I totally freaked out on the spinal tap and my husband was not there with me because he had went to pick up our girls.  I am deathly afraid of needles and I have to watch anytime I am stuck with a needle.  With an LP I couldn't see the needle going in and I started freaking out.  The doctor had to give me something to calm me down.  Needless to say I made through the procedure in one piece but I don't wish to EVER have another LP AGAIN!  A few hours later I started having severe leg  and back pain.  The doctor gave me  pain medication and said I should feel better by the next day.  Boy was he wrong! He told me most patients to don experience pain like that, but that he had seen it a few times before.  The pain still hung around.  Later that day the team of neurologists came in and said they had the results from the MRI. They had found 4 more lesions on my brain in addition to the lesion on my C2 vertebrae. So on December 22, 2011 I was officially diagnosed with MS.   When I heard those words I felt a little relief because I now had an official diagnosis, but at the same time I was stunned or more like frozen with fear.  The doctor kept asking me if I had any questions and I really couldn't speak, so my husband did it for me.  My associate pastor was in the room when they told us and as soon as the doctors left we began to pray.

I now had MS and I was trying to process this information because this was a disease that has no cure.  I am going to have this disease for the rest of my life!  I was trying to stay positive and at the same time I was breaking down inside.  I was told I would not be spending Christmas at home but hopefully I would be home for new years.  I was not happy about this because I wanted to wake up Christmas morning with my girls and open presents like we always do.  I  prayed and prayer chains were going up everywhere.  I was determined to be home for Christmas.  I had to be given so many rounds of steroids to treat this episode of MS.  I started the treatment on Dec 21 before there was an official diagnosis and on Dec 23rd the neurologists examined me and said I was doing remarkable and that if I still doing better in the morning that I could go home....on Christmas Eve!!!!!!  The morning rolled around and I was anxiously awaiting the visit from the doctors.  I had normal strength in my arm, leg, and foot and 70% strength in my hand. They said I could go home and I was ecstatic!  As soon as the discharge papers came around I WALKED out of the hospital...SLOWLY but I walked!  I spent Christmas Day with my family at home and it was great! God DOES answer prayers!

I have now started my medication for the MS called Betaseron.  I am doing much better, but I am still trying to cope with the diagnosis.  Some days are good and some days are not so good, but I try to keep myself positive and keep moving forward.  This is going to be a long road, but I have God on my side and with him I can do ANYTHING!