about time

Welp, it's been a while.  No excuse, probably sheer laziness.  Been off Copaxone, then on Rebiff, now back to Copaxone. Hmmmm.  The good thing is that either way I am still living with MS. or wait, is that the bad thing.  
Started back to school so I can turn my RN into a BSN then eventually a MSN.  Since I can't really work the floor anymore I will subcumb to that old addage "those who can't do, teach".  I don't know if it's a good plan or not, but it's worth a try.  
I started a research study, felt like being a guinea pig for a while.  Still having to take copaxone but now with an added pill (placebo or not).  It's a blinded study so I don't know if I am actually getting the study medication or not.  I get a cognitive exam every 3 months or so.  I am hoping to not have a decline in intelligence, but if you notice misspellings don't assume it's just a mistake :)
Every day I decide that tomorrow is going to be a new day and a new start.  My diet is going to be better.  My walking is going to be better.  My energy is going to be whoop whoop.  And every night I think about how I blew it for that day.  But the good thing is there is always tomorrow.

MS awareness month

THis is from MSassociation.org.  FYI, I am already aware of MS :0)

March is Multiple Sclerosis Awareness Month 

The Multiple Sclerosis Association of America (MSAA) encourages everyone to take time this March to learn about multiple sclerosis (MS) and discover all of the programs and services MSAA offers to everyone affected by MS.

• Read MSAA's award-winning publications, including two new publications: Daddy's Story , a n introduction for younger children to learn about a parent's MS; and Primary Progressive Multiple Sclerosis -- What You Need to Know , a comprehensive guide for the PPMS community.
• Visit the online gallery for MSAA's Art Contest for People Living with Multiple Sclerosis .
• Register for MSAA's Walking and MS webcast .
• Explore MSAA's website and read about the programs and services MSAA offers the MS community.
• View one of MSAA's educational videos in the MSi Video Library .
• Attend one of MSAA's educational events. Check the calendar for an event in your area.

• Donate to MSAA, learn more about the President's Circle, or create a 
  Circle of Hope.
• Volunteer with MSAA and please share your time and skills to help the MS community.
• Join MSAA's online community. Sign-up to receive periodic email updates or become a fan of MSAA on Facebook .

"Just the Facts" from NMSS

This is from the National MS societies brochure called "Just the Facts"
What are the typical symptoms of MS?
Symptoms of MS are unpredictable; they can vary from person to person, and from time to time in the same person. For example: One person may experience abnormal fatigue and episodes of numbness and tingling. Another could have loss of balance and muscle coordination making walking difficult. Still another could have slurred speech, tremors, stiffness and bladder problems. Sometimes major symptoms disappear completely, and the person regains lost functions. In severe MS, people have symptoms on a permanent basis including partial or complete paralysis, and difficulties with vision, cognition, speech and elimination.

What causes the symptoms?
MS symptoms result when an immune system attack affects myelin, the protective insulation surrounding nerve fibers of the central nervous system (the brain and spinal cord). Myelin is destroyed and replaced by scars of hardened“sclerotic” tissue. Some underlying nerve fibers are permanently severed. The damage appears in multiple places within the central nervous system.  Myelin is often compared to insulating material around an electrical wire; loss of myelin interferes with the transmission of nerve signals.

I have pretty much all the symptoms listed above at one time ,except for paralysis, or another and sometimes all at once.  As I said in the past, the most debilitating for me is the extreme fatigue and walking difficulties.

just feeling sorry for myself

I am unsure if anyone really reads my post or not, it really makes no difference  either way.  I find it great therapy to write my thoughts down once in a while. Although initially this post was to be inspirational, lately I have found it hard to stay that way.
I am angry today.  I am mad at myself for letting this disease get the best of me lately.  I am angry that I have this illness.  I want to be who I was before.  I don't know who I am now. 
 Since I have been diagnosed, it was my philosophy to not let this disease define who I am.  Well, that has been hard to do lately.  I try to do all the "right" things and I still end up taking 2 steps backwards.  
I want to feel well and not sick ALL the time.  I don't understand how some others have longer periods of well time and I don't even seem to get a week.  I want a break. Please give me a break.  A period of time when I feel well. I want to be able to do things and not have to pay for it a day or two later.  
I need some inspiration. I need some hope.  I need some healing physically and mentally. I don't like feeling this way.  I am usually the one helping others, but right now I need some.
When we put our cares in His hands, He puts His peace in our hearts.  ~Author Unknown

new medication

Went to my MS clinic yesterday to figure out why I have never recovered and come back to a baseline.  There is no explanation other than the medication that I am currently on is not the right one for me.  The plan is to start a new medication called Rebif.  It is still a shot but not daily like this current one.  This one I will take 3 times a week.  
I am kind of nervous about it.  When I start reading the side effect, it kind of makes me nervous.  They will have to monitor my liver enzymes, my white blood cells and my thyroid function.  Apparently it can give you liver damage and I already am living with that from all those years of taking a certain birth control pill that we all see warnings for on t.v.  I also already have thyroid problems.  But do the benefits out weigh the risks?  I sure hope so.
I will be going for another MRI in a couple of weeks to monitor for advancement of the disease.  MRI's are not as bad as I thought they would be, but I still hate going in there.  It never fails, once I am in the machine I feel the need to go to the bathroom or my arms start jerking from the vibration.  And not to mention the obnoxious noise.  They put earphones on you and ask you what kind of music you want to listen to, the last time they forgot to change the music and I ended up listening to some obnoxious punk or something music.  Anyway, the music never drowns out the noise and I will hear that loud hummmm, clicking sound all day long in my head.
I will cause you to walk in the straight way...I will open to you the gates of righteousness..
For whoever finds Me, finds life     - Psalm 118:19; Proverbs. 8: 35-6