Multiple Sclerosis Update

It has been a long time since I have written a post about Multiple Sclerosis and I really want to keep everyone in loop on what is going on with my health and all that fun stuff. Most of you know that I have an infusion once a month for my MS treatment. I take a medication that is called Tysabri. It is super expensive and can be dangerous but that is going to be another post. I was supposed to receive my infusion on the 23rd of September. That didn’t end up happening because the company I work for changed health insurance companies and I had to wait for a preauthorization to come through before I could get my treatment. So I show up on the 23rd and they send me home because of the whole insurance issue. For those that know a little bit about my job and what has been happening the the last 4 months or so you know that I can only take one day off a month because they have no one to cover the phones since they let go Misti who used to be my boss. So I knew I was going to have to wait a few weeks before I could take time off to go in and get the treatment once they got the approval that they needed.

My next infusion is on the 21st of October, which means that I have missed a whole month. Let me just tell everyone I have no idea how I used to live like this because I feel like crap. I always knew Tysabri was helping but I had no idea that it was helping so much. For the last 6 months or so I have had headaches and I also haven’t been in pain. Well since missing one month I hurt I have headaches and am exhausted. I literally slept almost all of Saturday because I was so exhausted from a normal week of work. I had to call my doctor and have her call in more pain pills because I was out and hadn’t need them so I didn’t bother getting a refill when I saw her last time. I feel so bad for people with MS that fill like this all the time. I am so glad that I have found an MS treatment that works for me and allows me to be a somewhat normal 26 year old. Also my hands are super numb right now and I am not sure if that is because I missed my treatment or just how the disease is acting right now.

I can’t remember if I wrote about my last MRI and doctor’s appointment so I am going to do a quick recap of all that information. I had my latest MRI in August and also saw the doctor after the results came in. According to the scan I am still stable and have been for about 2 years or so. They haven’t scanned my neck in a few years so when I go for my next MRI in February they are going to scan my brain and neck areas which means that it will be a super long and super expensive scan. I am interested to see if there have been any changes in the neck area. If there hasn’t been any changes that means I have been stable but if there are charges that means that I really haven’t been stable all this time. I hate the not knowing that goes along with having MS.

That is all there is for now. If anyone has any questions please leave them in the comments and I will answer them for you.

A Week In My Life

So this week I am going to be linking up over at Adventuroo.  She is a doing "A Week In My Life".  I have never done anything like this but I am excited to follow along so that everyone can see what a typical week is like for me.  For these posts you can vlog, take pictures and/or write about your week.  I am going to try and take pictures as I go through my day so you can see my day.  I also may video some of my day as well.  I am sure everyone would get a good laugh out of some of the things that happen at work.  As most of you know I am the only girl in the building anymore so things can get crazy at times!  This first picture is what I can see from my desk at work:

Monday's are always crazy for me and I didn't have time to take many more pictures.  I am going to try hard to take video tomorrow but I am not sure if it will let me upload it because my Blackberry is having major issues right now so I am going to try.  If it won't let me take video and upload it then I will for sure take lots of pictures so everyone can see what I do.

Today I just answered phones, typed up the bid list and put out fires as them came.  I did come home after work and get a few things done on my own blog and also started some new designs for clients.  I am getting ready to lay down so I am hoping I will have more for tomorrow!

Quote Of The Week-Steve Jobs

As most of you have seen I have this quote on my sidebar.  I have had it there for months and it is my all time favorite post.  I had a blog critique done on my blog last week, which I have an up coming post on, and the things that she said about my blog gave me a few idea's for new things on my blog.  I am going to change the quote that is on my sidebar once a week.  Also I am going to write a post about the the quote I chose each week.  If anyone has any great quotes please feel free to email them to me at theworldasiseeit25 at gmail dot com with why you love the quote and I will put it up on Sunday.  I am going to change the quotes every Sunday.  This week I chose the following quote by Steve Jobs:

 

I found this quote today and I love it.  I see so many people stay with the same person even if the person isn't right for them.  They stay because they don't believe that they will ever find someone or they can't stand to be alone.  I have been single for a year or so now and I am okay with that because I refuse to be in a relationship with someone just because I am having issues being single.  

Being Judged. . .

"A Birthmother puts the needs of her child above the wants of her heart"

- Skye Hardwick

Before I start this post I want to apologize if this post rambles.  I just wrote the thoughts in my head as they came. 

I have follow a few different blogs written by birth mothers and I also belong to a group on Facebook that is for birth mothers as well.  Recently I read a post that was written by a birth mom that made me start to think about how some people in the world look at birth moms and how people don’t want to learn about adoption.  I  have never regretted placing my daughter for adoption and I also haven’t had people say things to me about how they think what I did was wrong but I  have gotten the looks from people.  I get so tired of people being ignorant and rude to birth moms but not listening or let the birth mom explain why she did what she did.  I want to let the world know that birth moms choice to give their child a better life than what we could have provided them.  I am always willing to tell my story so that other people can be educated about adoption.

It is also hard for me to understand how some people can be so closed minded that they will judge us but not take the time to listen to us.  Some people don’t understand how hard it is to place a baby for adoption and then get judged and tell us that we made the wrong choice.    I have always been the type of person that if I don’t personally agree with a person’s choice I take the time to listen and hear the reason behind their choice.  I know not everyone will like the choice we made but at least give a chance to explain why we made our choice.  I guess the point of this post was to ask people to respect our choices.  Our choice was right for us and it may not be the choice for you but for use it was the right choice.

Have any of you been judged because of a choice you made?  How did you deal with it?

Freaky Friday

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It is time again for Freaky Friday Follow.  Before I get to the rules of the hop I want to let everyone know that I have a few new things that I am going to try out on this blog.  I recently had a review of my blog done, that I am going to post about in a few days as well, and she said a few things that made me realize what I can do this blog.  She also gave me tips and ideas on how to make my blog more for all of you.  That being said please let me know what you think of them and if there is anything you would like to see more of.

***Also for any new followers that have followed me in the past few weeks that I haven't followed back please leave a comment and I will follow you.  I realized this week that my comments haven't been working so I had to go in and take off the old comment system I was using.  As far as I can tell they should be up and working now so please let me know if you are a new follower so I can return the favor!***

There are just a few simple rules to follow for this one:

• Grab the button and post in on your blog
• Make sure you follow the host
• Leave a comment so we can return the follow.
• Try and follow are least 2 other people that are linked up
• Link up to the post that has the button on it!

Reserving Space. . .

 This week I chose to write about #5.) I have no idea where the following message originated from, but it's been floating around Facebook for the past week...who does it make you think about?:

Note: I have been having major issues with comments on my blog so if you are a new follower and I haven't followed back please leave another comment or email me at theworldasiseeit25 at gmail dot com.  It should all be fixed now but I will keep checking to make sure that everything is still working out!
 
This post started out talking about my husband and how he made me feel but I realized that this is something I need to work on and I need to make time for people I care about.  I find it funny that in trying to write a post about how doing this made me feel I can see how I make people feel when I do the same thing.  That being said I hope you enjoy the post and will stick around for me change!

I also have to admit that I am not great at putting out the effort to stay in peoples lives so they know I care.  I get so busy doing everything that I do that I don't make the time and then when I am finally done for the day and lay down it is all I can do to operate the remote control but I am going to get better at this because I have to!!!!!  I can't expect people to do all the work.  I think I am going to start talking to people I care about when I get home while I am working on designs instead of watching TV all night long.  I also need to rearrange my schedule a little bit so I can fit everything that needs to get done everyday.  So I want everyone I care about to know things are going to change and I am going to make more of an effort to stay in contact with everyone and get a set routine with working and designing. 

This post started out talking about my husband and how he made me feel but I realized that this is something I need to work on and I need to make time for people I care about.

W.A.I.S.T.ed Space Designs

 

I have finally launched my design I am so excited to finally have it up.  It took me so long to figure out how to design it and to get the design done.  I am super happy with out it turned out.  Please drop by and follow me over there as well.  Be on the look out for the giveaways I have going on over there as well.  

Also if you sign up for my newsletter over there you will get extra entries and be the first to know about sales and giveaways.  I hope to see you all over there soon!

Sponsor Spotlight-Katherines Corner

Katie from Katherines Corner is another one of my sponsors.  She has a great blog and tons of great articles and I really love the look of her blog.  She has so many great posts that it was super hard to pick a few of her post to write about.  I am going to highlight a few of my favorites and then at the bottom I will post the links to some more as well.

The first post of hers I read is called "Menopause Musings". All I can say about this post is that I so don't want to get to this point.  It sounds yucky and I feel bad for anyone that has to go through this!!!!  I will never understand why the females body has to do some of the things it does. 

Another great post of hers is called "From Trash To Treasure".  Here she talks about some of the old vintage jewelry that she made using jewelry that was broken.  She has an Esty shop called Shop Polka Dots  where she sells the things she makes.  She makes super pretty things and I wish I would have found her site before I got married because I would have bought several of the pieces that she sells.

She also has a great Autumn Giveaway going on right now.  It is open until October 7th.  Right now there are only 103 entries so you all need to run over there and enter in this giveaway she is giving away  these super cute  ceramic birds.

She also has a post about building a bird garden in her yard.  I so wish that I could do this in my yard because I love watching birds but as you all know I have 3 cats and they would see that a play area.  I can't even imagine how many of the birds they would try and catch.  Once my kids have passed away I think I will make a bird garden so I can enjoy looking at the birds!

Like I said before she has a great blog and a great store.  You all need to go follow her and order something from her store!

30 Things About My Invisible Illness

 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!