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!
Editors note: I saw that BonniesBows on Twitter was looking for people that would be willing to promote something that she was doing. I thought sure why not. I am so glad that I did because it is a great cause. She sent me this post and told me I could use some of it or all of it. I decided that I couldn’t say any better than she said it. If you could please copy and paste this on to your blog it would be much appreciated!!!!!!!! If you want to donate or buy something to help out this family please follow the instructions in the post!!!!!!
Luke 6:38 — “Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.”
BonniesBows has taken this verse to heart. I have decided to dedicate my ETSY store to help others. God has laid it on my heart to help one of my new twitter friends and I came to the decision that she will be the first of many.
I want to help raise money for a family in need. I am donating 20% of all BonniesBows sales in the months of November and December directly to Dana Sears’ family. Their government has let them down and I pray that God will use me to bless them.
I met Dana through twitter and was moved to tears when I read her story on her blog. As a mother, I was enraged and saddened over what Dana’s family has had to endure. As a mother, I felt a strong urge to protect her family and help them in any way I could. Dana has never asked for anything from me. She’s never complained or whined about her situation. She has merely stated what is occurring and what her life is like. I admire the heck out of her for all she is doing and has done for her sons. I encourage you to read her words here.
What can you do to help? Simple. Make any purchase from BonniesBows and 20% goes to Dana. You can also donate directly through the paypal button on Dana’s blog. Get a special something for your baby while helping hers.
*Also- please help us spread the word. If you blog- steal as much of this as you want and re-post. Twitter? Link us up! Facebook, Myspace, Message Boards- we will take any advertising we can get!
We can do this guys, WE can help this Mama take care of her babies. If it was your story wouldn’t you want someone to help you?
FREE CLIPPIE TO THE FIRST 10 TO MAKE A PURCHASE!
Dana’s Words:
Hello, My name is Dana Sears & I am Mason’s Mom. Mason was born with Special Needs. At this time we do not fully understand the “Special” but we do understand Mason’s “needs”. Because Mason doesn’t have a diagnoses, Dr’s don’t really know what causes his issues, we do not receive government funding for Mason’s needs. In 2009 Mason received his G-tube, this is a tube implanted into his stomach to allow us to bypass his swallowing. Mason’s feeding costs are around $100 a day, that works out to $36,000 a year, just to feed him. That is impossible for a young family. Mason also needs Occupational Therapy, Speech Therapy, Developmental treatment, Behavioural intervention & tools to help us in our day 2 day life.
Many families with Special needs Children struggle financially due to the extraordinary costs of raising our children. Our Family has gone $64,000 dollars in debt just giving Mason the bare minimums for the last year and a half. We are unable to supply Mason with everything that the Dr’s. and specialists say he needs. We have had help from Variety-The Children’s Charity, they supplied one year grant of $5000 when we were weeks away from having to give Mason over to the Ministry, we had no where left to borrow money from.
I never thought by Blogging my feelings, or our journey trying to solve Mason’s Riddle that I would run across someone like Bonnie. Bonnie is an amazing woman, to want to help my family is more than I can thank her for. I am not good at asking for help, but we are again needing some funds for Mason. We are stuck waiting to hear about our appeal to the government and waiting to hear from Charities. As the next couple of months go by we will be in need of more medical supplies again.
What will we use the Donations for? The specialists have asked for Mason to have a swing that he can use at all hours of the day. Swinging is a long acting drug in Mason’s body, better than any pharmaceutical available. Mason is the happiest when he is swinging. Over time we have purchased most of the parts like the swings, rope ladder, rings, and just need to purchase the lumber and bolts to complete it! This swing will allow Mason to use one anyone type if swing at one time and will sit in a room in our house. Also we need to purchase some more feeding bags, and a few Mic-key buttons. We go through a Mic-key button every two months, these cost just over $400 a piece. On average I spend $30-$45 a week in parking for appointments. This is a huge expense that most people don’t realize. We have one credit card, right now it’s maxed out at $1500 for just parking dues. It’s crazy.
Editors Note: This is Melissa’s post for the week. I am working on a new button for this feature and I hope to have it ready for next week! Enjoy!
Life has a way of making us feel down, if we allow it, and we often do. Sometimes a friend or a loved one disappoints us. Our life circumstances are not the way we want them to be and we let it get to us. A stressful day at work or at home can lead us down the path of not having a positive outlook. It is perfectly normal to feel let down, sad, and even depressed when we encounter any of those circumstances. Those kinds of things have a way of throwing us off balance and sometimes we need to take some time to realign our thinking. Unfortunately, many of us have a habit of dwelling on those negative circumstances for far longer than we should, and we can become overwhelmed with negative thoughts and emotions.
For the sake of ourselves and our relationships, we should not allow that to happen. For those of us with a high risk for entering a depressive episode, dwelling on negative thoughts and emotions can be a trigger. Even for people without that risk have been known to enter a depressive episode if they spend too much time concentrating on the negatives in their life. At the very least, spending so much time dwelling on the negative can make us cranky, irritable and difficult to live with.
There are things we can do to turn our negative thoughts around. It requires work and effort, but the pay off is well worth it. If we take the time to turn our negative thoughts around, we are often more productive at resolving an undesirable situation. We are able to obtain more clarity about a situation and with clarity comes the ability to make a plan. If a situation is beyond our ability to change, then the clarity can show us that, and allow us to come to terms with it. It can also show us ways we can change our reactions, giving us more choices on how we manage situations that are beyond our control to change.
One of the first things we should do when realigning our thinking from an overwhelming negative thought process to one of that is more positive and productive, is decide if the situation is something that we can obtain control over or not. Once we make that determination, then we can start the process of either implementing a plan to change the situation or implementing a plan to change our reaction. Just getting that process done can be a huge stress reliever, because either option allows us to take some action. For most people, the ability to take some sort of action, immediately makes them feel more positive, and productive.
If the situation is one that we do have the power to change, we need to start figuring out what change we want to take place, and what steps we need to take to get there. For example, if we feel lonely and out of touch with people, we might want to take steps to be more available. We can do this by participating in volunteer activities in our communities, call friends, family, or acquaintances rather than wait for them to call us. We can make plans to have coffee, dessert, or a meal with someone. We could also use the internet to make new or improve social connections. Just because a friendship only takes place online does not negate the positive impact it can have on a life.
If we feel overwhelmed at work, is it because of poor organization on our part or is it a result of poor organization on someone else’s part? In either case there are things we can do. If we are the ones who are disorganized, then we need to do the necessary things to change that.. If it is someone else creating the dis-organization, maybe we could offer to help them to become more organized. If they let us help them accomplish this, then we are helping ourselves at the same time we are helping them. If work is overwhelming and there is nothing we can do about it, maybe if we found ways to be grateful it might help keep our thinking more positive. We could be grateful that we have a job with the way the economy is now. Or we could be grateful that work is so busy, because it might mean we have a little more job security than if it were slow all of the time.
There are always going to be situations where there is absolutely nothing we can do to change it. If we try and control a situation that is beyond our ability to control, then we are always going to feel upset, disappointed and frustrated by it. That means we have the obligation to change our reaction it. In the case of a friend disappointing us, we might need to decide if it is something we can overlook and live with, or if it is something we should bring up to our friend, or if what happened is a “deal breaker”. All of those situations require us to react in a different way than we might normally.
Sometimes people do stupid, hurtful things without meaning to. When that happens they usually realize it after the fact. Would saying anything to the friend cause them more pain and shame, than they are already feeling? Or would it be better to just let things go, and allow everyone to move on? Many times, letting it go is the best reaction in that type of situation. If the friend is unaware of how their actions hurt us, then we should say something to them. Then it is up to them to make the choice to apologize and alter their own behavior or not. Rarely, but it happens, we will have a friend that hurts us so bad that it can be considered a “deal breaker” – something that requires the end of the friendship. When that happens, we should take the time to bring it to their attention and make them aware of the impact it had on us. If, after that conversation they either do not understand or care about the pain they caused, it is time for us to remove that person from our lives. Not to be mean to them, but to protect our own mental health.
Some people find prayer very effective, especially in regards to situations and circumstances they have no control over. For them, it removes the worry from their own shoulders and thoughts, and gives them to God – who is much more capable of handing things than we are. Just the act of turning things over to God is comforting because it is another way we can change how we react to things. It is peaceful and comforting to know that we are not burdened by those things any longer. That peace and comfort allows us to no longer feel frustrated and angry about things we have no control over.
Life happens. It happens in all its glory and pain. It is up to us to make the choices to prevent life from overwhelming us. We have the ability to make those choices, some of us just have to learn how to.
I haven’t participated in the writers workshop for a few weeks and I thought that I would participate this week. I chose to write on 5.) “Keep your face to the sunshine and you can not see the shadow” – Helen Keller. In what ways are you able to stay positive about something that sometimes brings you down? I have a few things that bring me down. The MS and thinking about my daughter that I placed for adoption. I have several things that I do to stay positive about both of them. When I sad about the adoption I think about how happy they are to have gotten her and how happy she is. I also take time to look at the latest pictures of her and see how she is smiling and happy with her family.
Now the MS is a whole another issue. I try not to think about it a lot because it scares me and brings me down. When I do happen to think about it I always remember that right now I am stable. I also try and focus on the fact that no one knows the course the disease will take in me. I could never get more disabled than I am right now. For the most part I just try not to think about the problems in my life. I try and focus on the good!!!!!!
I am going to do a small over view of different MS medications out there and then for the next couple of weeks I will go into more detail about each of them. I want to start by saying that there is no cure of MS right now. There are a few medications that will hopefully slow the progression on the disease. The first group of drugs are called Immune modulating drugs. They work by keeping the immune cells from interacting with other cells. This group consists of 3 different drugs they are called Betaseron, Rebif, and Avonex. There is one other drug that is under this type of medication and it is Copaxone. This one is made of amino acids and works differently than the interferon’s.
There is Tysabri that attaches itself to the blood brain barrier and doesn’t let immune cells into the brain. There are several other treatments such as: Novantrone, Cytoxan, Imuran, Rheumatrex, and Trexall. All of those treatments are drugs that will suppress the immune system.
They will sometimes give a person steroids if the are having an MS flair up or relapse. I have been given steroids several times and I will always refuse them now. I don’t think they really didn’t anything but make me gain weight and make my eyes see funny colors. I can see why they do them but I would rather have some disability than deal with the side effects of the drugs.
I have taken several of these drugs and I will post about how I reacted to each of them that I have taken when I explain them in more detail. As always if you have any questions please let me know!
