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Thanksgiving & My Birthday

28 Nov
Written By

Thursday was Thanksgiving here in the US and that is always a super busy day for me as it is for tons of people. I helped my grandma and I also worked on designs most of the day. I want to redo both of my sites but I have no idea what I want to do with my sites. I also come up with great ideas for clients but I can never figure out what I am going to do with my own sites. Oh well I always figure it out in the end. We had my grandma’s family over and there was quite a few of them that showed up. I never did count but we had planned on 17 or so. Once that was over I just went to bed because I was exhausted and I didn’t even do much because the MS is kicking my butt lately.

My birthday was on Saturday and I didn’t do anything other than go to dinner with my grandparents and my brother. My birthday was uneventful this year and I am okay with that! I am not looking forward to Christmas for several reasons but the main one is because I am already so tired I don’t know where I am going to find the energy to do everything that goes on this time of year. I think I will just hide!

I hope everyone had a great weekend and if you are in the US I hope you had a Happy Thanksgiving!

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30 Things About My Invisible Illness

2 Oct
Written By

 I know that Invisible Illness week is over but I wanted to fill this out so that I can update my MS page.
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: I believe it was 2000
3. But I had symptoms since: I was in elementary school
4. The biggest adjustment I’ve had to make is: Not getting upset if I can’t do everything I want to because I am having a bad day.
5. Most people assume: That I am just lazy because I don’t do much after work.
6. The hardest part about mornings are:  Getting up when I have only had a few hours of sleep.
7. My favorite medical TV show is: I love everything in Discovery Health but they got rid of it because of the OWN network.
8. A gadget I couldn’t live without is:  My cellphone that keeps all of my appointments.
9. The hardest part about nights are:  Being exhausted and not able to sleep.
10. Each day I take 5_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:  I wish I could afford to do acupuncture because I hear that it really does help people.
12. If I had to choose between an invisible illness or visible I would choose:  I would want a visible one
13. Regarding working and career:  It is hard for me to go to work everyday because of lack of sleep and not feeling well but I have to work so I can have insurance even though we all know that insurance companies don’t pay anything.
14. People would be surprised to know:  That my hands are numb and I had to reteach my self to type.
15. The hardest thing to accept about my new reality has been: I can’t think of anything because I have had this disease so long.
16. Something I never thought I could do with my illness that I did was:  I have tried to not let the MS keep me from doing things.  I do everything that I want to.
17. The commercials about my illness:  I actually haven’t seen a commercial about MS.
18. Something I really miss doing since I was diagnosed is:  I miss not having energy.
19. It was really hard to have to give up:  I don’t feel like I have given up much because I have had this disease so long now and was diagnosed so young that it is just a part of who I am.
20. A new hobby I have taken up since my diagnosis is:  Blogging and blog design
21. If I could have one day of feeling normal again I would:  I am not sure what I would do.  I can’t imagine life without MS.
22. My illness has taught me: To live everyday to the fullest because you never know what your last day is going to be.
23. Want to know a secret? One thing people say that gets under my skin is:  When they say they are sorry that I am sick.
24. But I love it when people:  Take the time to learn about MS.
25. My favorite motto, scripture, quote that gets me through tough times is:  “You never know how strong you are until being strong is the only option you have.”
26. When someone is diagnosed I’d like to tell them:  To learn all you can about the condition because knowledge is power.  I also tell them that they are in charge of their condition and if a doctor wants them to do something that they are not comfortable with they need to kind a new doctor.
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:  Because I want to raise awareness about MS and any other invisible illness.  I know how hard it is for me to deal with people who don’t understand invisible illnesses.
30. The fact that you read this list makes me feel: Good because it means that people are reading my blog!
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Latest MRI

9 Aug
Written By

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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Filed Under: MRI, MS, MS Tuesdays

Writers Workshop-My Passions

1 Jun
Written By
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

27 Mar
Written By

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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Filed Under: MS, Rant

Rambling

22 Mar
Written By

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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Filed Under: MS, Random Thoughts, Single

A Rough Time

8 Mar
Written By
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

7 Dec
Written By

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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Filed Under: MS, MS Tuesdays, Stem Cells

MS Rant

4 Nov
Written By

I try to keep my rants off of this blog but I think people that have MS need to see that some days having this disease totally sucks!  I don’t want people to think that because I tend to not post about those days that they don’t exist.  Right now I am struggling because I have to except how I am feeling as the new normal and I don’t want to.  No one wants to know that this is as good as it gets.  I am at the point right now where I need to except it and I don’t want to.  I want to tell the disease to go fly a kite and go away.  I am 25 years old and I don’t want to be dealing with this disease!!!!!  I have knowing that this disease takes so much away from people who have it.  I look at others with the disease and get mad at myself because the are worse off than I am and yet I am still bitching and pissed off because of how I feel.  I know I should be grateful that I am not more disabled but instead I am pissed off that I have to deal with this disease at all.  I was doing so well at staying positive with how things are going and now I am back to when I got diagnosed and not dealing well with it all.  I want to bury my head in the sand and just ignore it but I also know that I can’t do that.  Part of this I am sure is just being 25 and being to damn stubborn for my own good.  I will never totally except this disease!  I know I can’t give up on treatment since it working but hell I am tired of going once a month and having it done.  I am tired of worrying about PML and the disease getting worse.  I am tired of people hearing about my diagnoses and being scared to date me or even talk to me.  I mean good hell it isn’t going to kill them hell it might not even kill me.  I am tired of all the crap that comes along with this damn disease.  I am so tired of being in pain and my doctor not giving me what I need to deal with the pain.  I am tired of being on all the medications that I am on to treat how the MS has made me feel.  I guess it boils down to the fact that I am tired of the disease!

Okay I am going to leave it at that.  Hopefully get this out will help me move on from this point!

Filed Under: MS

Interferon

2 Nov
Written By

I am going to talk about the interferon treatments this week but first I have to tell everyone something.  I started this feature because Jacqui said that I should.  She told me that up until she had met me she didn’t know anything about MS.  Well this past week a gentleman left a comment on my blog that made me see that people may not comment on this feature but people are reading it.  He is newly diagnosed and found my blog while researching the medication they put him on.  I was shocked and happy that people are reading my blog and it really is helping people.  To be honest I have been considering not writing about MS anymore because I didn’t think I was helping people but since I heard from him I will keep doing it.  I may not do it every week anymore because I am running out of things to talk about but I will keep doing it from time to time that is for sure.

Now on to this weeks topic.  There are 4 interferon treatments that I am aware of they are Avonex, Betaseron, Extavia, and Rebif.  I have take both Avonex and Betaseron.  I had bad reactions to both of them but because of doctors who were unwilling to listen to me I was on and off them for years.  The major side effects are flu like symptoms.

Avonex is a once a week intramuscular shot.  This medication has to go into the muscle.  I always had to have my aunt who is a nurse give it to me when I was taking it.  I hated these shots and so my grandma would bribe me with things that I wanted so I would take them.  I hated them because they hurt and they made me so sick.  They made me feel like I was burning up on the inside and my skin hurt to be touched.  I can remember waking up in the middle of the night and just crying because I hurt so bad.  All the doctors would say that my body would get used to it but I never did if anything the reactions got worse the longer I was taking the medication.

Betaseron and Extavia is a shot that you take every other day.  It is one that is just below the skin so it isn’t as bad as the Avonex but I found that while I was on Betaseron that they hurt worse and I bruised more with them.  This type has a self inject thing so I “could” give it myself but I would sit there for hours debating with myself to push the button and I never could so in the end someone would have to push the button for me.  I always struggled with giving myself a shot.  I had the same reactions as I did with Avonex except this was more often so I ended up feeling like crap all the time.

I never took Rebif but it is given three days a week.  It is the same type of shot that Betaseron is.  I would assume it has the same side effects as the other ones do.  The reason I never took this one is after Betaseron I decided until something new came out that wasn’t an interferon I wasn’t going to treat my MS.  I would never recommend this to anyone.  It was right for me but it isn’t right for everyone.  I finally found a doctor that was and is willing to work with me and listen to me. 

Next week I will take about Copaxone which is one that I have taken as well!  I hope this will help people.  If you have any questions feel free to leave a comment and I will get back to you or write a post about it in the coming weeks!

Filed Under: MS, MS Tuesdays
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