Changes From Last Year To This Year

April 25, 2013 By

Changes

This week for the writers workshop I am going to write about what was going on this time last year and what I think of it all now that it is a year later.  I went through the whole month of April and I really only wrote 5 actual posts.  The few other posts I had were reviews of some sort. Here is a list of the posts from last year if you would like to go back and check them out.  I also will list any changes in how I am thinking from last year to this year.

  • My MS Medications- all of my medication are basically still the same and since I am stable there is no reason to change them or to even mess with them.
  • Standing Still- I forgot that I wrote this post last year and to be honest I still feel like I am standing still but I also feel like I am all alone and I know that is because of how I have treated people.  There are parts of this post that are still true and other parts that aren’t because I really don’t have any friends anymore.
  • MS Tuesdays Medications That Don’t Work For Me- nothing has changed with this post because nothing has stopped working for me.
  • How To: Break Your New Cell Phone- lets just say I haven’t broken a phone since this post and I better not break my iPhone or I am going to be pissed.
  • My Top 10 YouTube Channels- this has changed so much so I am going to make another Top 10 because I have some new ones and I think everyone would like.  I still like all the ones I listed but there are some newer ones that I want to share with everyone.

How has your blogging changed from last year to this year?

Mama’s Losin’ It

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MS Tuesday- Sayings & Graphics

March 26, 2013 By

MS

 

I follow several different MS Facebook pages and I am always seeing fun sayings and graphics for MS and I wanted to post them here so that I would always be able to find them if for some reason I needed them.  Here are ones I have found so far.13007_573022382726240_703674569_n 64678_10150599952098644_325823235_n 150732_10150816700128876_1282210341_n 182132_3894233866986_1036569138_n 198268_10150904742058876_1731190783_n 229312_10151077643763876_691997354_n 249622_10151048123948876_169396041_n 301538_584809928196525_860027000_n - Copy 302715_4350658837325_354717230_n 379295_4902877362443_187908437_n - Copy 404100_10151051808478876_2031454144_n 481135_10151004711758876_564571436_n 482354_582456875116124_388336461_n 535065_10150704164078876_53733744_n 545863_10151054197128876_267688931_n 557012_10151071931953876_1247509596_n 564713_10151056941673876_2006935935_n 603311_10151055490498876_1670670639_n b4fd75778be11ddbbd0d8118b86e77f8 il_fullxfull.183021016 images Mult multiple-sclerosis-ribbon

 Do you have any that you like?

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Multiple Sclerosis Update

March 12, 2013 By

MSIt is time for another Multiple Sclerosis update.  I had an MRI in February to check and see if the MS was still stable and if anything had changed in the past 6 months.  For people who have been following my MS journey for me to have been basically in remission for the past 5 years is huge.  The disease has always been super active so Tysabri is definitely the medication I need to be on now.

We also discussed a couple of the new treatments that there are for MS and she gave me her thoughts on them and we also decided that since Tysabri is working for me that we won’t even consider changing treatments unless for some reason Tysabri stops working for me.  I personally don’t like what I have read and a few of the things she has told me about the medications that are now in pill form so I am not willing to give them a shot right now.

This is a short update but that is because nothing is going on and I hope to keep it that way.  I am going to write a post about what an infusion day is like for me so be on the look out for that in the next couple of weeks.

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Things That Drive Me Insane-Insurance Companies

February 19, 2013 By

Things That Drive Me Insane

 

I am sure everyone knows that I have Multiple Sclerosis and because  of the medication I use to treat it I have to get MRI’s every 6 months. I had my latest MRI on Saturday the 16th of February.  I received a call on the Friday before my MRI from my health insurance company and all I could think was great now what is their deal.

For a little back story I have always had problems with insurance companies.  It always seems like since they have to pay out for me they tend to give me the run around and what not.  One time a few years ago I actually had an insurance company make everyone that they paid money to send the money back to them and then I had to fight with them in order to get them to pay for the claims that they requested the money back for.  Lets just say that fixing the mess took over a year and I am still sure I paid to much on a few of the claims because I just got tired of fighting with them about it all.

Anyway back to the story  when I answered the phone they basically wanted me to change the place of my MRI because the place I was getting it done at wasn’t one of their preferred providers.  I was dumbfounded because  I was having the MRI the next  day and I know enough to know that there is no way that there would be an opening on a Saturday to get a MRI if most places even do MRI’s on Saturdays.

I understand why they called about it but they didn’t have to give me hard time when I told them that I was okay with paying more because my doctor works out of the hospital and it is easier for me to keep track of my records and what not if everything is done in the same spot.  I get that they want to save me money but if I am okay with paying more than they really should just say okay and get off the phone.

I am glad they were trying to save me money and everything but in the end if I am okay spending more money then just leave it alone.  I may spend more money for the MRI but it means that I don’t have to worry about my doctor getting the results or anything like that because she will be able to just pull them up in the computer.  I have had the scans done at other places before and it always turns into a big hassle when it comes to getting the results and things like that.  So that is the latest thing that drove me insane.

What is driving you insane this week?

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Mulitple Sclerosis Update

December 12, 2012 By

Mulitple Sclerosis UpdateIt has been quite awhile since I have written and update about Multiple Sclerosis and what has been going with that.  I had an MRI at the end of August and it showed that I am still 100% stable which is amazing for me.  The MS has always been very active in me so that fact that I have been stable for about 4 years or so now is huge for me.  I know it has everything to do with the Tysabri and that makes it all worth it for me.

While I was at my doctors appointment she asked me is I wanted to get tested for the JC virus, which for those people who don’t know it is what cause people on Tysabri to get PML.  I told her no because I won’t stop taking Tysabri so I really don’t want to worry about it if I do have the JC virus.  She did tell me that if and when I do have another relapse I will have to get the test done to rule out that  I haven’t developed PML.  My chances of developing it now that I have been on it for about 4 years is really low so I am not worrying about it all.

Other than that there hasn’t been any changes.  I still have ups and downs when it comes to how I feel and things like that but that is pretty normal.  So there isn’t much else I can say.  I am stable and doing pretty well.

If you have any questions please let me know!

30 Things About My Invisible Illness

June 12, 2012 By
I was going through the drafts of posts that I have and I found this questionaire.  I am pretty sure I got this last September during Invisible Illness week and for some reason I never filled it out and posted it.  I figured I would fill it out now and compare it to the one I did a few years ago.  If you want to see the other one click here and it will take you to it.

1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2000 or 2001 I believe
3. But I had symptoms since: I was in 5th grade
4. The biggest adjustment I’ve had to make is: Realizing that I have to slow down and pace myself.
5. Most people assume: That nothing is wrong with me and that I am just lazy
6. The hardest part about mornings are: Getting up if I have been up most of the night or if I am in pain
7. My favorite medical TV show is: I don’t really watch any of these since they took Discovery Health off the air in my area.
8. A gadget I couldn’t live without is: My computer & my cell phone calander
9. The hardest part about nights are: Falling asleep and staying asleep.
10. Each day I take __ pills & vitamins. (No comments, please) 7 everyday and then maybe 3 or 4 more depending on pain that I am having.
11. Regarding alternative treatments I: Really want to try acupuncture but I don’t have the money to try it right now.
12. If I had to choose between an invisible illness or visible I would choose: Visible
13. Regarding working and career: I currently work as a receptionist and I also design blogs but I had to quit my job in the medical field because of it.
14. People would be surprised to know:That  my hands are numb and I had to reteach myself to type.
15. The hardest thing to accept about my new reality has been:Knowing that I can’t do the same things other people my age do and also knowing the people get scared off when they find out I have MS
16. Something I never thought I could do with my illness that I did was:I can’t really think of anything.
17. The commercials about my illness:I haven’t really seen any commercials about MS
18. Something I really miss doing since I was diagnosed is:Since I have had it so long I don’t really miss anything because I have been dealing with this for years now.
19. It was really hard to have to give up: It has been hard for me to stop eating gluten because I love bread.  I didn’t find out that I couldn’t eat gluten till about 5 years ago but when I don’t eat it my MS does so much better.
20. A new hobby I have taken up since my diagnosis is: Since I have had MS for so long I haven’t really picked up anything new other than design blogs and blogging.
21. If I could have one day of feeling normal again I would: There isn’t anything I  would do differently than what I do now.
22. My illness has taught me: Is to slow down and enjoy the little moments
23. Want to know a secret? One thing people say that gets under my skin is: “I am sorry” or “That has to be hard”
24. But I love it when people:Don’t judge and take the time to listen and 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 choice you have”
26. When someone is diagnosed I’d like to tell them:Do your research because knowledge is power!
27. Something that has surprised me about living with an illness is:How shallow and rude people are and can be.
28. The nicest thing someone did for me when I wasn’t feeling well was:Just be there
29. I’m involved with Invisible Illness Week because:I want everyone to learn about invisible illnesses
30. The fact that you read this list makes me feel:Good because it means that you are willing to learn and you are judging.

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MS Tuesday-Depression & Anxiety

May 15, 2012 By

I am going to talk about depression and anxiety which are two  Multiple Sclerosis symptoms that have be living with for the past couple of years.  Growing up never had an issue with anxiety and what issue I did have with depression I was able to control and I didn’t have to take medication for it.

About two years ago I had to get on medication for depression because I literally could barely function at work and I was always on edge.  After I started the medication it helped but I noticed I could no longer handle things that I used to love to do.

For example I have always loved being alone.  My grandparents went on a cruise for 10 days last month and I was so anxious because I was home alone most of the time.  The day after they left I literally sat in my room because I was so anxious.  I also found myself checking the door locks a hundred times where as when they are home I never check them unless I have to get up and let one of the cats in.

I believe that in my case my depression and anxiety are cause by the MS.  I know that not everyone with MS will have both of these symptoms and that some people who have these symptoms but not have MS.

Before I started on Tysabri when I would have MRI’s to check and see what the disease was doing I always had active lesions but I rarely had any symptoms.  I believe that while I at the time didn’t show any outward symptoms that those active lesions are what caused my anxiety and depression issues that I currently struggle with.

Right now I take Zoloft for the depression and I don’t treat the anxiety because I have learned how to talk myself through it.  I also have found that removing myself from the situation that is causing the anxiety is a great way for me to cope with it as well.

I received the book called “It’s Not All in Your Head: Anxiety, Depression, Mood Swings, and Multiple Sclerosis” by Patricia Farrell.  I can’t remember the site where I was signed up and got the book for free but from the little bit of it that I have read it can’t wait to read more of it.

I would recommend the book to anyone with MS or anyone that has a family member or friend with MS.  Once I am finished with it I will for sure write a review and I think I will give it away to someone with MS.

In the end I want people to know that is you have developed anxiety or depression that you aren’t alone and don’t be afraid to ask for help.  At first it was hard for me to ask the doctor about it and start the medication but the more I learn about MS and what it can cause I understand why I have had to go on medication.

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MS Resources

May 1, 2012 By

This week I decided that I would post some Multiple Sclerosis resources that I have found and that I use on a regular basis.

Now I am sure there are ones I haven’t listed or haven’t found so if you have one you like please leave it in a comment and I will update this list with them.
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MS Tuesdays-Medications That Don’t Work For Me

April 10, 2012 By

This week for MS Tuesdays I am going to talk about the  medications that I have taken to treat MS and why they didn’t work for me.  I have tried quite a few of them and I hope that people that this might help someone who is having a hard time finding a treatment that may work for them.  Please don’t base your choice for treatment on this post because just because something didn’t work for me doesn’t mean that it won’t work for you.  My best advice to research them and then with the help of your doctor go with the one that you both think will work the best for you.

I have taken 3 treatments other than the Tysabri that I am taking right now.  I have taken Avonex, Betaseron, & Copaxone.  I am going to talk a little bit about each one and how the effected me while I was taking them.

  • Avonex- I started out on this medication when I was diagnosed at 15.  Let me just say that this medication I took on and off for years because it was the one medication at the time that had the least amount of shots a week that you had to take.  This medication was rough for me to say the least.  They say it has flu like symptoms.  The best way to descride how the medication made me feel for the whole weekend after I took it is my skin literally hurt to have anything touch it.  It didn’t matter if I took the Benadryl like they told me to.  Every week I was sick all weekend and as time when on they said the reaction should get less and less but for me it got worse every week.  Like I said I tried this medication for years on and off because it was only taken once a week unlike all the other treatments at the time that are taken multiple times a week.
  • Betaseron-This medication is taken every other day.  So one this medication was literally sick everyday of my life because I never got used to the side effects of this medication as well.  This medications has the same side effects as Avonex has.  This one had an autoinject so that I could give myself the shot but me being me I couldn’t push the button I would sit there for an hour and in the end someone would have to come and push the button for me.  I hate giving myself shots and since no one else wanted to give me shots this medication did last long either.

Here is the link to where I talk about all the interferon treatments they have.

  • Copaxone-Now this medication isn’t an interferon so they thought that this one should work for me.  This medication is given through a shot everyday day.  Now this really didn’t work for me because I couldn’t give myself shots.  I think I tried this one for about a year but towards the end I wasn’t taking it regularly because all the injection sites would get red and develop hives.  I will also say that at this point in my treatment I was being a stubborn teenager and I just wanted to ignore the disease and act like it wasn’t part of my life.  Here is the link to the original post where I talk about all the possible side effects of this medication.

There are more than just these 3 medication out there for MS and last year the did release the first pill you can take for MS.  If you want to read more about that you can go and read this post where I wrote about it before.

The best advice I am give anyone is to research treatment options and then with the help of your doctor pick the one that will work best for you.

If you want to know more information or want me to write about something please let me know in the comments below.

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My MS Meds

April 3, 2012 By

I am not sure if anyone would be interested in the medications I currently on for my MS but I am sure there is someone who would be interested to know what is working for me right now and all the things I have tried that hasn’t work for me over the 11 years I have be treating the MS.  For this post I am going to talk about the medications I am currently on and what I am taking them for.

Tysabri-I am currently using this to treat the MS.  I have been on it for over 3 years now and even though it is dangerous I won’t stop taking it because it is the only MS drug that is out there right now that is controlling the MS.

Baclofen- I take this three times a day.  There are some days that I may only take it once but depending on pain & how I am feeling I may take it all 3 times.  I use this for the spasms I have and I also use this because of my back injury.  If I don’t take this at night I wake up stiff in the morning and in tons of pain.

Zoloft(sertraline)-I take this once a day and it is my antidepressant.  Depression runs in my family but I also think that the MS has made mine worse and also made me super anxious.

Loritab- I use this as needed for pain.  I get 20 pills a month and I usually use them all but  most of them are use the weekend and week after my infusion because that is when I tend to have the most pain.

Fiorinal- I use this for my migraines.  I have had migraines since I was in 5th grade.  Most of the time if I can catch it at the beginning I can stop it from getting super bad but on days that I don’t catch it or it doesn’t respond to the usual things I have to take 2 of these.  The thing I love about this medication is I can still function at work while I am taking it.

I also use things such as Benadryl, Tylenol, and Ibuprofen almost daily.  If you have any questions about any of the medications please let me know.  Next time I am going to write about what MS treatments I have used and why I stopped using them.

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