8 Years On Tysabri – MS Tuesday

MS

On my birthday of this year, I will have been on Tysabri for eight years. It is so hard for me to wrap my mind around that because at times it seems like I just started yesterday. I also look back, and I see how far I have come and how much I have learned about the healthcare system in this country. I also have learned the most drug companies have programs to make medications cheaper and that give them to you for free.

As I sit here and think about the first infusion that I ever I had I am amazed that I am a still taking this medication. I had an atrocious reaction to the first treatment so I wasn’t sure if I would be able to stay on it not to mention how much money it costs every month. I don’t know that I ever wrote about what happened the very first time I got the medication, so I am going to add it to my list of things to share.

I have to wonder what my life would be like if I hadn’t started Tysabri and if I wasn’t on any treatment. I have been stable the entire time I have been on the medication which for me is a huge deal. Since I have been diagnosed the MS was never stable but like I said it has been for eight years.

It also has given me my life back. Okay not given me my life back because I have no idea what it would feel like to be a normal functioning person but it makes me feel like I can anything I want to do. I still have hard days, but I don’t want to know how much different things would be if I didn’t have this medication.

Those are just a few of the thoughts I have about having been on Tysabri for eight years. I will be back with a small MS update in the next few weeks as well. Let me know if there is anything you would like to know about as well.

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Multiple Sclerosis Update-March 2016

MS Update-March 2016 N

I had my infusion, and I also saw my Multiple Sclerosis doctor on Monday, March 21st, so I figured that now was a good time to post a small update on how things are going and how I am feeling.

If I am going to be a one hundred percent honest with everyone I have to admit that I have been feeling pretty sick most days for the past couple of months.  Which has made my life harder but is part if the game when you have diseases like Multiple Sclerosis.  The last time I saw my doctor was back in December before I switched jobs and insurance companies.  I am sure the new job along with the stress of it is part of the problem.

I also have been feeling like I going to have a relapse soon because of some strange things that I have been feeling for the past couple of weeks.  I remember one morning a couple of weeks ago that as I stood up to turn off my alarm my legs gave out. After I had sat back down for a few minutes, I was able to walk, but my legs did feel weak. I also have also had times where out of nowhere I feel like my legs may give out on me.  They haven’t thanked God, but it is such a strange feeling to feel your legs get weak and then have it go away after a few minutes.

Nothing was changed at my doctor’s appointment which I guess is a good thing. The only thing that she did was to schedule my next MRI for the 2nd of April, so I have that to look forward too. So other than all that my life has been pretty stable which is always a good thing. I hope you are all doing well, and I hope to see you back here tomorrow for another book review.

Digiprove sealCopyright secured by Digiprove © 2016 Margaret Margaret

Updates: Doctors Appointment, Multiple Sclerosis, and Everything Else

Updates

I had a doctors appointment on Monday June 8th and I wanted to write a short update about that appointment and also an update about how I have been feeling lately.  I also decided as I was writing this post that I wanted to include just a general life update because  I am truly struggling with things right now.  I can’t tell everything that is bothering me but I will tell what I can and maybe I will still write what is going on and password protect those posts and if you want to check them out you can email me and I will give you the password for them.  Anyway lets get on to the MS update because that is the easiest and quickest part of this post.

As I said before I had a doctor’s appointment Monday afternoon with my neurologist.  I hadn’t had an MRI or anything since I saw her last but she does like to see me every so often because of the medication I am on and things like that.   I haven’t been feeling the greatest lately but there is nothing that can really be done about that because I just don’t feel well.  My headaches are getting bad again which totally sucks because I went so long without having them or at least not having super bads one.  I know that the reason I am having them is because of allergies and also just the stress of life.  I have an MRI in August and I don’t have to see the doctor again until December so that will be nice.

Now on to the life crap that I am willing or able to talk about.  I have no idea where to start or what I even want to say.  I guess the first place to start is with the fact that the daughter I placed for adoption will be 10 this year and I am honestly not sure where the time went.  It has also been a hard year this year when it comes to dealing with the adoption and I am not sure why this year has been so hard for me.

Another thing that has been hard for me this year is family things and usually I don’t really care what goes on with family members but this year that has changed for me.  What is funny about it all is that what I am sad about didn’t even happen this year and to be honest I am not sure why it is now bothers me like it is.  I am sure it is because of everything else going on that is making all the little things in life that usually don’t affect me hard for me to deal with right now.

Anyway that is all I can think of right now so I am going to leave it like this.

How are things going for you???

Digiprove sealCopyright secured by Digiprove © 2015 Margaret Margaret

Things That Drive Me Insane-Nurses

Things That Drive Me Insane

This time for things that drive me insane I am going to talk about my latest infusion and how bad one of the nurses there was.  The thing that made me the maddest about the whole situation was the fact that she was a supervisor.  Anyway lets get onto the story.  I am sure you all know that I have Multiple Sclerosis and that I take Tysabri once a month to keep me stable.

So once a month I go to the hospital and get an IV in my arm so I can get the medication.  The best way to describe how the give it is to say they give it like they do Chemo or when you have a blood transfusion.  So usually they get the IV started with just one poke but this time it took 3 times.

Now if the only problem was that I took three times to get the IV started I wouldn’t be so pissed about it but the second time they poked me it hurt like hell and here I will show you a picture of the bruise that formed:

Things That Drive Me Insane-Idiot Nurses

This was taken 5 minutes or so after I got home from getting my infusion done.

This bruise was already forming before she pulled out the needle because she couldn’t find the vein.  I don’t think I have ever had a nurse dig around so much trying to get the vein.  She was digging around for a good 2 to 3 minutes and still couldn’t get it.  She then had to poke me for the 3rd time and thank god she got me then because if she hadn’t I wouldn’t have let her poke me again.

Here is what the bruise looked about 4 or 5 days latter:

IMG_0286[1]

What the hell is up with the straight lines????

Let me just tell you I have never once seen a bruise like this.  The fact that there are straight lines is so weird and everyone that see’s it says the same thing.  I ended up having to go to the hospital and get blood drawn because she messed up and my blood test came back weird so they want to make sure that it everything was okay.   Oh and this bruise still hurts and I bet even when the bruise goes away I will still have pain because I believe she went into the muscle and did some damage.

I pray to god that when I go back for my next infusion that she won’t be there because I hate making scenes but there is no way in hell that she is ever going to get another needle anywhere near me.  I have another Idiot Drivers coming up next week.

Has this ever happened to you???

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

My MS Meds

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.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

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.
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Friday I had my infusion and lets just say that for the first time since I have been doing them I had to get poked twice.  She kept digging with the first needle until I told her I couldn’t deal with the pain any longer.  There is nothing that hurts more than a nurse fishing around in your arm trying to get a vein that she has missed but doesn’t want to re-due it and get it right.  After about 3 or 4 minutes digging around I finally said that’s enough.  I can’t take the pain anymore.  She then poked me again a little higher up on the vein and got it in the first time.  Now where I was poked at hurts and I got a battle wound (bruise).

I also got an email from my daughters adoptive family.  It totally made my Friday.  They told me about her and also enclosed two pictures for me.  I am not going to post them but if you would like to see them let me know and I will email them to you.  I can’t believe how big she has gotten and how much she looks like my little brother.  She is short like I am but has the coloring of my little brother.  They said that she is all girl and is really good in school.  I was so glad to hear from them and happy that she is doing good.  It will be six years in July since I had her and placed her for adoption.  I know I made the right choice when I look at her pictures and see how happy she is.

I didn’t do that well this week when it comes to not eating.  I tried my best but lets just say that this week wasn’t the best.  I also haven’t done well on my diet but I am going to try and go walking tomorrow even though I will have to go by myself.  I really just need to charge my Ipod and go for a walk every night.  I need to lose the weight and I also need to get in shape for our trip to Yellowstone this summer.

That is all I have for today.  I still have a few spots left for designs so let me know if you are interested in getting a free design!

http://theworldasiseeitbloganddesigns.com/friday-i-had-my-infusion-and-lets-just/

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!

Long Week

It has been a super long week.  The men that I work with are getting meaner all the time and I am not sure how much more I can deal with it.  I don’t understand why they feel that yelling at me or Misti is going to get their problems taken care of faster.  If I get yelled at by the guys I always make sure that I do what they were yelling about very last just because I am pissed.  I get so tired of getting yelled at about things are out of my control.  How hard it is to understand that I only enter in orders.  I have no idea about credits and if the customer is put on credit hold it isn’t my problem that we can’t invoice them out and or enter an order for them.  I am really at the end of my rope when it comes to dealing with the men and having them be total assholes to me all the time.  I am just going to start staring at them when the freak out and if they calm down I will try and help them.  If they don’t calm down then I am going to refuse to help them.  They treat Misti & I like we are stupid idiots that don’t do anything.  If Misti or I were to quit everyone would be in a world of hurt.  Hell I don’t even think the guys know how to work the phones let alone use the accounting program.  I really with there was a way to show the guys how things would run if one of wasn’t around.  They have no idea of how much Misti and I really do.
Yesterday was also my infusion and that always takes a lot out of me.  I don’t know why it makes me tired but it sure does.  I am so glad that it is over and I don’t have to worry about it until next month.  I am sure getting tired of the infusions and taking time off work so that I can get them done.  When I take days off of work I want to do fun things and not spend 4 hours or so at the cancer clinic getting medication put into my body.  One good thing is that my liver is doing super well which is a great thing.  I have to wonder how long my liver is going to hang in there though.  I has to deal with so many chemicals because of all the medications I am forced to take because of this damn disease. 

That is enough of this for now.  I will be back!  Have a great weekend and…..

GO PACKERS!!!!!!!!!!!

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New Design & My Latest Infusion

As you should have noticed I got a new design from Jacqui!  I love this one and may keep it longer than the last one lol.  I am finding I get bored easily and love to have new blog designs.  I need to leave it along for awhile because I can’t afford to keep changing it every few months.  So this one will stay for awhile!

I had my infusion on Friday and it went pretty well.  I didn’t take the Benadryl that I usually take because I wanted to see if I could get along with out it.  I am happy to say that I didn’t need it this time.  I did get a headache but that is pretty normal.  The one thing I did notice about this infusion is I was super tired after it.  I hate how I am tired for a few days after and then come Monday or Tuesday I am good to go.  Oh well if that is one of the only things I have to complain about I will deal with it because I am starting to feel better after them again.  It has taken a few months to get back to where I feel better after them.  Now I need to start walking after work so I can lose all the weight I have put on these past few months because I haven’t been able to do much because I was so tired. 

I hope everyone has a great Monday!  I may be missing for a few days because work is super busy for me right now.  I had tons of work left on Thursday and since I am off this coming Friday as well I need to get totally caught up!  Wish me luck!