MS

Latest MRI

Last Thursday I had my latest MRI.  I get one every 6 months because of the Tysabri.  Lets just say that I know why they do it but it is a waste of time and money.  I could see if you where having problems but I haven’t been having any problems so it is just a waste.  Anyways lets to get back to the topic at hand.  I had it done Thursday and went to the doctor on Monday morning to get the results and see my neurologist.  We according the MRI it shows that I don’t have any new lesions on my brain but I am having more issues with balance lately.  Since we weren’t sure what is causing the balance issues she is having me get my necked scanned along with my brain the next time.  I hate MRI’s and adding the neck will just make it even longer!!!  It is so hard to stay still for that long.  My back ends up killing me and I always move a ton when they are doing the neck so they have to keep rescanning the same area.  Oh well it has to be done!

That is all I having going on right now.  I hope that everyone is having a good week!!!!!

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Writers Workshop-My Passions

Mama’s Losin’ It

 These are the prompts for this week:
1.) Six Word Memoir: Write about a significant time in your life in just six words.
2.) “One need not be a chamber to be haunted, One need not be a house. The brain has corridors surpassing material place”. –Emily Dickinson What haunts you?
3.) Describe a talent or flaw that seems to be in your genes.
4.) What are you passionate about?
5.) Comfort food at it’s finest. Share a family favorite recipe you loved as a child.

I am having a hard time picking one to write about.  I am going to write about #4-Something I am passionate about.  I am passionate about a few things but the main one is probably trying to teach others about MS.  I just want to bring awareness to the disease in hopes that people are getting diagnosed they aren’t alone.  I know when I was diagnosed I was scared to death and what made it worse was there was no one around my age that had the disease.  I am finally getting to the point where people my age are getting it. i just want people know be able to get the support that I found lacking when it come to MS and even other invisible illnesses. 

I am also really passionate about raising awareness about adoption but more importantly I want to get help for the birth mothers that are left out in the cold.  I wish people could see the great things these women and be their for them but usually birth mom’s end up getting judged because of what we choice to do with our children.  For those that may not know I am a birth mom.  I placed my daughter for adoption almost 6 years ago now.  Since then I have found that there aren’t places for birth parents to go and get support when they are having hard days.  I have started a blog and Facebook page for birth moms.  I am also considering starting a support group in the Salt Lake City area for birth moms but I am not sure how to go about starting that.

Anyways those are 2 of the things that I am passionate about.  There a few more but those two are on very top of the list.

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NES & Health Update

Another week down and I have actually done really well this week when it comes to eating at night.  Friday and Saturday nights where the only nights that I ate so that is a huge improvement from where it has been.  I am still on the Slim Fast diet and it isn’t going super well.  I haven’t weighed myself so I am not sure where I am at right now but I think I am going to weigh myself first thing in the morning and see where I am at and use that as my starting weight.  I hope that I can start losing the weight but I don’t really hold out much hope of it.  I know I need to start exercising again but with the MS as bad as it had gotten I am not sure how I will do working out.  I am going to try and do the 30 day shred again tomorrow and see how far I get before I feel like I am dying.

I am so tired of the MS and always being sick.  I am 26 and yet I am always at home because I am to tired or weak to do anything.  I am just tired of being tired and in pain all the time.  I know that it is just part of the disease but it is getting old quickly.  In June we are going to Yellowstone and I am not sure how much I am going to be able to do.  I am scared that I am not going to be able to do all the hikes with my family.  I will be so sad if I end up having to sit out some of it.  I love Yellowstone and all the hiking but if the MS stays like it is I am not going to be able to much of anything.  I am holding out hope that things will be okay and I will be able to do what I want to do.  My hands are super numb right now and I think I am getting carpel tunnel which sucks but just another issue I have to over come.

I hope everyone had a great weekend and will have a great week!
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Rambling

I am finding that I am in funk lately.  I just came seem to find things to write about and some days even if I have things to write I don’t feel like writing them.  I hate when I have days or weeks like this.  I can sit for hours and stare at a blank screen and have no idea how to get the thoughts in my head out of my head.  I am just so tired of things in my life that I not sure what to do to make them go away or at least not bug me as much as they have been.  I am just tired of a lot of things in my life anymore.  I am so tired of being sick and not being able to do much because I get tired so quickly.  Like Saturday my Grandma and I went shopping and we were only gone a few hours by the time we got home I could barely move because I was in so much pain.  I am just tired always being sick and spending so much time and money at doctors offices.  Hell I live at home because I can’t afford rent because of the doctor bills!  I guess I am just tired of this disease and it taking my life away from me.  I am only 26 is shouldn’t have to deal with this stupid disease.  Hell no one should have to deal with this disease.  It might be easier if I could plan on what was going to be wrong during a day but every morning when I get up and I am like “well what is going to work right today?”.  I am always waiting for something to go wrong because you never know what this disease will do.

I also am having a rough time being single right now.  It sucks when I have times like this.  People around me are going to say see you aren’t okay being single.  What they don’t get is that some days are tough and it tends to get lonely but more than not I am totally satisfied being alone.  I hate when I feel like this because I know all too well that I am better off alone.  In time this all will pass or at least I hope it will pass!!
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A Rough Time

This last weekend was super tough for me.   I am switching antidepressants because of my eating disorder and things are not going well at all.   I had my infusion on Friday and I really think it messed with me bad.  I literally slept all day Saturday so I didn’t take any of my pills.  Then on Sunday I didn’t take them because I didn’t want to get sick.  Let me tell you never again will I miss any days of taking my antidepressants.  Now to top off the missing two days I am starting the new one.  I am a total mess.  I hate messing with antidepressants it is so stressful and not to mention emotional.   I am sit and think today of everything and have to wonder how I have made it this far in life.  I have gone through some major stuff and yet “most” days I am able to keep going and not think about all my past issues.   Although the past few days though I find that I am barely hanging on by a thread.  I find it hard to deal with all of my past issues right now.  I know when I am evened out on my antidepressants that I am okay and I can deal with the day-to-day things going on.  I sit at work with my personal life in chaos and can’t even get away because work is a joke right now.   I never before have seen when it rains it pours come anymore true than right now.

I was getting to leave work yesterday and I broke down crying because I remembered like it was yesterday all the emotions and feelings I had when I placed my daughter for adoption almost 6 years ago.  I sit here and I can remember all the feelings I felt when I saw her for the first time.  She was about 12 hours old before I even saw and held her.  When I went into the hospital I didn’t want to ever see her.  Before I had her I felt that it would be easier for me if I never saw her or held her.  I had called my night nurse for a pain pill.  When the nurse came in with the pain pill she told me that it was time to feed my daughter and asked me if I would like to feed her.  As I was sitting there in the middle of the night I knew it was something I needed to do.  After the nurse brought her in and left the room I remember looking at my daughter and crying because I knew if a few short days I was going to place her with her family.  I remember feeling so happy that she was here and perfect but so sad knowing that every minute that went by was one less minute I was going to have her with me.   Then as I thought about it more all the feelings that I had when I was signing away my rights to her came back as well.  I can remember sitting there with my social worker and two nurses with the pen in my hand and the paper in front of me thinking that if I didn’t hurry and sign the papers I never was going to be able to do it.  I remember when I was down the great weight I felt on my shoulders and still have that weight today.  I hoped then and still do hope that I did what was best for her.  I pray every day that I truly did what God wanted me to do.   I remember sitting there after I signed holding her and knowing that the time to say goodbye was there.  We were all talking and I got quiet and started to tear up.  I knew in my heart that it was time to hand her over to her family and walk away.   I remember getting up and handing her off to her adoptive dad and then turning around and breaking down because of what was going on.  I vaguely remember the adoptive mom asking if she could give me a hug and me saying no.  At that point I watched as they walked out of the room with her.  I then got in a wheel chair and left the hospital empty handed and broken hearted.

It is hard to be at work and feel all of that like it was happening yesterday.   It is hard for me to feel all these emotions and know that they will pass soon but not sure how long I can hold out for that time to come.  This post is just a lot of rambling but I hope it helps me because now it is out.  There is more that I am feeling but I don’t have the emotional capacity to write about it now.   I hope that everyone has had a better weekend than me.  As for the NES update and an MS post I will hopefully pick those up again next week!

MS Tuesdays

I found this really interesting topic on MS on one of the other blogs I read.  I am not going to quote his blog but I went and found a article on it.  They have found a way to use stem cells to make the myelin sheath around the nerves that is damaged by when the immune system attacks the nerves in MS patients.  The research was done at Universities of Cambridge and Edinburgh.  They found the mechanism to make the stem cells start regenerating myelin around the nerves.  The myelin insulates the nerves like the the plastic that surrounds a copper wire.  When the myelin gets damaged the nerve doesn’t work as well or even work at all.  They are also hoping that the research done with help people develop drugs that will promote myelin repair in MS patients
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So if there is away to fix what damage has been done then they can reverse the damage and even cure the disease.  Now this has only been done in rats but if they can do it there then they are getting closer to trying it  in humans.  I have always figured that stem cells were going to be the way to helping people with MS and I am so glad to see that it can possible work.

I am out of ideas on what to post about so if you want to know something please leave a comment.  I am not going to do this every week anymore because I don’t know what to post about.  So please leave me comments on what you want to know and I will write it up for next Tuesday.

Sources:
http://www.aolhealth.com/2010/12/06/new-hope-for-repairing-multiple-sclerosis-damage/
http://www.medicalnewstoday.com/sections/multiple_sclerosis/
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