I have a minute

Now that I have 5 minutes to myself before more wedding preps, I figured I should let everyone know how I am feeling.

After my 3^rd medication (Betaseron) I have had no additional lesions on my brain and the biggest ones are shrinking! I couldn't have been happier to receive that news from the neuro. Although injecting 3 times a week can get a little crazy, and I am not proud that the weekend of my wedding ceremony, I have skipped some. 

MS Fatigue still gets the best of me and over working myself doesn’t help. I am hoping to rest up before our reception this weekend! Not even MS can ruin this!

 I will continue my posting soon! Duty Calls and its shot night! :)

With Love,

Amber Caroline

Just Rolling Over and Closing My Eyes

Again, “we”, my team and I, are raising money for the Mahoning Valley MS walk. It is on April 21st, 2012 at the Scrappers Stadium. I will include a link to my page. There you can donate or join my team “Spot the Cause”. I hope you all will find it in your hearts to help support this cause that is so near and dear to my heart. A little goes a long way, a friend to walk with goes further.

Well, I said before that I just wanted to focus on school. With our resources, I was able to do so and I am currently enrolled. However, I had to take one of those “you can’t take another class unless you finish this one” classes. So only taking one class was a pain in the butt! I am so glad it is over with now! But sitting around the apartment, bored, was not helping me. Plus I am taking online course so human interaction was very little, unless you count my dogs. I love them to death but they don’t really talk back. So I got a job. 

I am very impressed with the job functions so far. The only killer is that I have to be up by 5:45 am and out the door by 7. Learning something new for anyone would be tiring. Tie in MS and medication and I am exhausted! Then school after work, and by 9:30 pm my eyes are closing and I am off. With Rebif, I get flu-like symptoms. So I even walked into work with a fever from the night before! I am working through it. I have done it before, but the only difference, when I was diagnosed I already knew my job very well. So when I tied in the medications and the shock value it wasn’t so overwhelming. Starting a new shot with a new job, that’s A LOT OF NEW.

Early April I get to see my Neuro again for a checkup. I do believe we will be ordering a scan to see if the disease has progressed. Who knows at this point! I am just hoping that 44 MCG’s, 3 times a week is enough to silence MS for a little bit. With the relapse I had, I know there will be additional damage that may not be repaired and I am prepared for that. But I am trying to prepare myself for if the medication has failed again. With my ever so changing moods and self-confidence I am just trying to cope and be as happy as I can.

With an ever changing disease I expect some light can peak through and give me some more hope. Things can change so fast, and people may not realize until it happens to you. My eyes are wide open, my heart is full, and my mind is trying to clear out the clutter. I am at times hopeless, scared, tired, over worked, and mad. But in life, who isn’t? The only difference is that any second something important, like the ability to see or the ability to walk can be taken away and could never return. Science can only go so far but it is the drive that pulls you through and shows you the possibilities. Remember, you never know what someone goes through unless you walk a mile in their shoes. 

With love,

Amber

http://main.nationalmssociety.org/goto/spotthecause

I’m in a good place

The 5 long day infusions with Solu-medral (IV Steroids) seemed to work! Thank god. I was hoping it would do something. Again, I had optic neuritis in the right eye. For those of you who don’t know what it is; basically it is a sudden swelling of the optic nerve. The swelling can damage the myelin surrounding the nerve. This will result in vision loss. Unfortunately, no matter how strong your eye glass prescription is nothing will look clear. It almost looks like you have wax paper over one eye. This was my relapse. So the IV steroids are supposed to lessen the time in a relapse. The earlier it is caught the more effective the drugs are.

I had many nurses come in and redo the IV’s because they were clogged, or kinked, or the IV moved into the tissue (which is bad). The last nurse who finally got it in my hand had told me the other nurses were putting in child size IV’s and that would explain why they were not working. Well gee thanks! Lol After recovering from looking like a bruised junkie I feel better. And best of all I SEE better! I have to admit I didn’t want to do this. I think because of the fear of the unknown. I was scared, but I am so glad that I did. The world seems, well clearer =). It took a good week for it to work, however, my right eye still sees the “red” colors as dull. 

I did however, have to change the way I eat. I introduced a lot more vegies and reduced most of all carbs and sodium. Although the 5 days are over, the meds sit in my system for 6 weeks, so I’m not in the clear just yet. This was to ensure I didn’t get the “moon face” from steroids. And I didn’t!

Rebif seems to be working (Normal injections I get 3 times a week). Hopefully this time around it works with my brain! I get cold and a little uncomfortable through shot nights but it’s manageable and I guess okay. 

Once again “we”, my team and I, are raising money for the Mahoning Valley MS walk. It is on April 21st, 2012 at the Scrappers Stadium. I will include a link to my page. There you can donate or join my team “Spot the Cause”. I hope you all will find it in your hearts to help support this cause that is so near and dear to my heart. If anyone has any questions please shoot me an email or comment on this post and I will try to help the best I can =).

Again thank you for the support and thank you for reading!

http://main.nationalmssociety.org/goto/spotthecause

With Love,

Amber

...Lights Out...

Suddenly, once again, the world got dark, blurred, and oddly familiar. You know that feeling your whole body gets when you realize a fear that overwhelms your whole being? I had that feeling multiple times over the last few weeks. 

I had a viral infection in my eye that I picked up from god knows where. I really didn’t think anything about it. When it got so bad, I went to the doctor (family doctor) and ended up with some drops to soothe my eye. This was the end of the beginning. The infection cleared but my vision never came back. For the second time in my life it happened. That fear filled my heart and traveled to my soul. It’s unfair and mysterious advantage had taken over once again. One day you think you are in the clear, and just as that day ends, it tells you who is in control. Multiple Sclerosis is a battle that I am prepared to fight. 

After days of contemplating getting IV steroid treatments, which my Neuro was so adamant about, I finally said yes. I went down to the hospital infusion center Wednesday for the first infusion. Then I had home health come and put an IV in so we can do it at home for the remaining 4 days.

 

Mark has been the doctor, nurse, best friend, and best fiancé. He has been doing all the infusions through my IV, and doing all the home things since I am restricted to use that arm until Sunday. He really keeps me going. I don’t know what I would do without him. He embodies this strong and charismatic feeling that exudes from him to me. I am so grateful. Words cannot begin to explain the overwhelming gratitude for a man who never asks for anything and will never give up on me. If there was a way that I could pay him back, it still wouldn’t be enough. Thank you baby.

I have been getting positive responses that are much needed through this. I just wanted to take the time to tell everyone Thank you. This dark and scary period that MS patients have to go through is frightening and can be downright exhausting. Keep the kind words coming because they are much appreciated and much needed. As much as I always try to keep strong and positive, it’s all of you who remind me that I can do this once again. I love you all and thank you.

With Love,

Amber

Busy.. Busy.. Busy

If you are like me then holiday seasons are filled with a lot of traveling and agenda’s. I have been so busy that this is the first time I was actually able to sit and write. We were on a 3 week tour of agenda’s for this holiday season. 1. We needed to go back to our house that is for sale to paint. Not just to paint a little but the whole dang thing. That took a good week. Then we moved onto family.

My best friend was getting married and I was lucky enough to be the maid of honor. Let me just tell you, it comes with a lot of responsibilities but I have to say to see the smile on her face was truly worth it all. She was a beautiful and gracious bride. I just hope I did everything that she wanted.

 In between this all was Christmas Eve and Christmas. This holiday season was about trying to keep our traditions and just spend happy and memorable moments together. In the mist of all the craziness I have to say I love our families. And this was the FIRST year ever that we weren’t rushing to get dumb gifts because we didn’t know what to buy people. We actually had an idea and stuck with the plan. Although Mark and I still did our tradition of shopping on Christmas Eve.

Of course, holidays are not complete unless someone gets sick. Poor Mark was miserable the day after Christmas. Having MS, I have not gotten sick in almost 3 years. I always say that I have too many “good guys” fighting inside my body that I am just exempt. Well my “good guys” must have taken a vacation because yours truly caught Mark’s cold. How the hell do people do the cold thing? Agh! I forgot how miserable someone can be when they are sick with a cold. So I slept a lot. Piled on fluids and became heavily medicated. It took weeks to shake the cold.

The drugs:

I wish I could have said that Copaxone was working for me. I put up a big fight with this medication. I tried everything. I adjusted the depth, switched to warm packs instead of cold; I was still taking Benadryl and rubbing the lumps at the injection site. However, nothing worked! We went as far as injecting Mark with the meds to see if we were in fact doing it right. After he did it NOTHING happened. He has some redness and a PIN whole. That’s it! Even though he said that it hurt very badly and that he couldn’t imagine feeling the “bee” feeling every day. It really does feel like a million bees are stinging you. 

This experience has lead up to getting a new Neuro. Since we have moved, I have had a struggle trying to explain most of the things happening to me over the phone with my old Neuro. So I, or shall I say Mark, found a fantastic doctor that specializes in MS. The only problem is they had an opening in April. I knew that I was allergic to this medication and April is way too far away. So I had my old Neuro call and he got me Feb. I thought it was better but looking at the lumps and feeling the pain, this too was still not good enough. They said the only thing we could do is call to see if there was a cancellation. So I did everyday. I would call and plead my case, explain why I needed to get in sooner. They didn’t seem to care. Finally, I told Mark that he should try; maybe he will have better luck. So he did. I heard him plead with this man on the phone; he was explaining my sob story. He explained, while I have not had any exacerbation, that he didn’t want to take a risk. All of a sudden, he came out of the room and said that a nurse would be calling me to set something up later that day. Okay, I swear I tried that but no one listened to me! But whatever, he got me in.

So I set up an appointment in early January. Mark and I went down to the hospital where the Neuro was located and met with him. I shot myself up all week to prove to him that I was allergic. In my head there was no way I was staying on this medication. If I could prove to him that it was this bad maybe he wouldn’t consider leaving me on it. Of course I walked in ready to put up a fight and he nicely said I didn’t have to do that and that he would have believed me.

 Okay, put yourself in my shoes, ALL of the shared solutions people (the nurses given to you via phone for Copaxone) made me feel like I was insane and making it up. They kept telling me this was completely normal and I had nothing to worry about. So that is why I did what I did.

 Any ways, doctors and MS don’t really go hand in hand. This is my second Neuro and even though he was more thorough with testing than the last, you always have to make your own decision about treatments. Although it’s good, sometimes you need some more guidance. We went down the line and I explained that Rebif and Betaseron seem to have the same components as Avenox. (That is the medication that really didn’t work with me since I had 3 new lesions show up in my MRI scan.) So my last neuro thought it would be a good idea to get away from those. He had mentioned he would like to see me on the pill. (Gilenya) This is a tier 2 medication. And like I said before I didn’t think I was ready for it. But here I am.

The new neuro asked why I didn’t want to be on the pill or Tysabri, (this is an IV that you get once a month in a hospital). 

Here are my reasoning’s I explained:

The pill (Gilenya)-

I didn’t want to me put on this because it is new. It came out sometime last year and I wanted to get more statistics. I didn’t want to be on it because it slows your heart. And I don’t want to die.

IV (Tysabri)-

I didn’t want to be on this because it causes brain infections. You could die within 6 months of getting it. Again, I don’t want to die. The statistics of this medication are not in my favor. And the track record I have right now doesn’t look good for me.

After explaining this he then gave me his suggestions. The reason why he wouldn’t want me on the pill just yet is because the statistics are not there. Although it will slow my heart, it’s not so much to where it is alarming. It is only 10 beats. I would be monitored in the hospital for 6 hours after taking it just in case. But his real worry about the statistics is that we don’t know if this pill can cause infections like the other medication. This is the fear of the unknown. He gets my concern about the IV and he definitely will not push me to do it. But he tried to make it sound a little better, not to convince me but just to keep an open mind. 

As far as Rebif and Betaseron go he said that these injections are on a much higher dose. And that it might work for me. It is true that they are Interferon’s like Avenox but it could work. I still could get the flu like symptoms like fevers, chills, and feeling like a truck hit me. 

He then asked what I thought. Getting choked up, I didn’t want the doctor to see my vulnerability just yet, so I pushed it back and asked what if I wasn’t on anything? How bad did he think it would be? Since he was unable to actually look at the scans of my MRI’s he was only able to read the notes. But he said that seeing that there was progression even though they were silent lesions, he really wouldn’t recommend me not having any kind of medication.

Again, another blow to my vulnerable state. And then he asked again, what I thought. Once more, that ball was in my throat and I looked at him and said exactly what I was feeling. (I am never one to hold back). I said, “This sucks!” He really saw my hesitation and I told him that maybe I need to read more and talk to Mark. See if we are on the same page. I told him I didn’t want to commit to a medication just yet because I really have a month and a half of Copaxone in my fridge that I can’t use. With the mail order pharmacy, they like to give you a 3 month supply. If this new medication didn’t work then not only would I have the extra meds from Copaxone in the fridge, I would also have 3 months of the new meds. Then he came up with a brilliant plan. He would only approve a prescription for a 1 month starter kit for Rebif. If I had a problem I will stop and switch to the pill. If I liked it and want to continue he would approve more. 

This to me was a perfect situation. I would have one foot out and one foot in. So I opted for this. I was tested for the normal things that being on an interferon forces you to be tested for. A vile of blood for my kidneys and liver was taken, another one for my thyroid and something else. Finally another vile for the pill as a “just in case” measure. 

We have then decided on Rebif. This medication is taken 48 hours apart. We decided on Sunday, Tuesday, and Friday. I start with the smallest dose for 6 times (a half of a half) so my body gets use to it. Then I move to the half. If I can tolerate it I then will get the full amount. We had a new nurse come out to retrain us on injecting. She saw and felt the bumps that were the result of Copaxone. She was amazed at how bad it was. She actually said that I could have developed holes in my injection sites if I would have continued. (I have seen the pictures; they look like someone got a spoon and scooped out huge holes. I am so glad I stopped.) The injection sites are exactly like Copaxone, only you give it 3 times a week. 

Here is the good news, NO injection site reactions this time. I have a pin hole. I have no bees and no lumps. I have NO pain. However, I am kind of scared when I get the full dose to have those flu like symptoms come back. But it has to be better than what I was experiencing with Copaxone. So now I have a whole new slew of nurses from a different company (MS Life lines) calling and monitoring my progress. But as long as I have no new lesions and no site reactions, maybe this could work.

So there you have it. I have a plan. I am out of the dark and trying something new. And to top it off I have a position at the MS society as an advocate. I will be talking to state legislators about the disease. So take the bad to get to the good. Life is about the rollercoaster ride. Sometimes it’s not fun but it all has meaning.

With Love,

Amber