what is this about chemo

         

     So today I sit in my chair, in the infusion center, hooked up to an iv pole. I have already talked to my doctor and had my check up. We discuss all the good, the bad and the ugly parts of this disease. Then I get to sit in this chair for hours getting all different kinds of medication pumped into me through my port I have in my chest. It is a long, tiring day but needed. I have been doing this routine for years. The nurses know me and we have made friendships. Other patients come and go and I get to talk to people I might have never meet. It is a long day but I also get to spend it with the love of my life.
     Let me tell you what my day looks like. I come in and talk to my doctor. Then I go sit in a comfy chair and wait for my nurse to hook me up to m iv. I have a port so this makes it easy on everyone. They have to be careful to make sure that everything is sterile and then they hook me up. They start me off with zofran to keep me from getting sick. Then we do benadryl to help with my allergic reaction that I have every time. Then I do a steroid, and zantac and Tylenol. After I get all my premeds I then get my chemo. I have a reaction at high doses so we have to do it nice and slow. This makes this process a all day process. It tires me out and makes me sick and sore but it is necessary.
     Okay now for all those asking why is this necessary if it makes me so sick? Why would I put my self through something that make me feel like I have the flu and the stomach bug at the same time? Well let me try and explain. Because of the form of lupus that I have is so resistant to medication and anything else that we have tried this is our last option. During my treatment it is painful and I feel awful but then I get a couple of months that are not so bad. I will take those couple of weeks of pain and discomfort for the couple of months of feeling more human. As my disease progresses the months are getting less but it is still needed to slow down the progression of this crazy disease. Yes it is an extreme treatment but when you do not have anymore options that is what you do. I still do natural things and have a special diet but this is the only thing that has shown any signs of slowing down what is happening to me.
     What does the chemo do to help lupus? I thought chemo is for cancer? I hear these a lot and never be afraid to ask me, I really don't mind. The way chemo helps is that it attacks the immune system that is attacking me. It helps shut it down so that it is not going after my body. Chemo is not actually just for cancer. It is used in many different disease but it is most known for dealing with cancer. This is why you think of cancer first. This treatment has given me time. I will take bad if I can get any good. I am thankful for this treatment even though it is hard. Since I have started it I have not had any big long hospital stays. Does it come with risks, yes? What in life does not have a risk. I hope that I explained this enough.
     Through all of these things I am thankful. I am thankful that they have found something that helps even if it is not fun going through. I am thankful that I woke up this morning and was able to get out of my bed on my own. I am thankful for everyday, even the bad days because it still means I am here. I am so very thankful for my Lord, my family and my friends. Do I have days that I am not so thankful, Yes, I am human and sometimes I can not handle everything but then I have my family and friends to help pick me back up.                

An introduction to me

Hi! My name is....

     So I thought it was about time that I start this whole blog thing. I am not good at this but I wanted to share with you all a little bit about me and my life. So many of you have known me for a long time and some of you are new friends that have not had a chance to know me for very long. Many of you have seen post on my facebook about things that have happened in my life and I thought that it might need an explanation. So this is my way of explaining this crazy thing I call life.

      Okay so where do I start. Well I guess I will start at the beginning. Okay maybe not all the way beginning but to where the story takes a turn. I meet the love of my life in college in 1999. My wonderful husband and I have been married since 2000. Matt is the most wonderful caring man I could have ever asked for. We knew right away that we wanted to have kids. So in May of 2002 our daughter Alexis was born. We were overjoyed. She was perfect, aren't they all? After she was born I started to have problems with my left wrist. The doctor at first thought that it was just from repetitive use but that did not make since. So after seeing a specialist they found out that I had cyst in my wrist. So I had a surgery to remove them. They said there will be no more problems. Well I wish that was true. I ended up having 5 total surgeries to remove cyst over the next couple years. In that time I had my two beautiful boys. Lucas in 2004 and Parker in 2006. After each of the boys I started having more pain and more difficulties with my blood pressure and some strange things but they never could pin point anything specific. In the next couple years my wrist got worse and I had to have my ligaments repaired which did not work. This lead to a partial fusion and then a full fusion. After the next couple years I had more strange things happen but nothing could be explained. In 2010 I was having difficulty walking so I was sent back to my orthopedics and they found something weird in my knee that sent me to a hematologist. This is were after much testing they found out I had Lupus. This was a shock but also gave us so many answers.

        Lupus, this is a disease that people know about and also know nothing about. My grandfather had this disease but yet I was not prepared for it at all. We had hopes that I had a mild case of it but after all the years of dealing with it, I unfortunately do not. I have what they call severe medicine resistant Lupus. We have tried every form of medication that there is out there for Lupus and some that are not even for it. However it is still very active. From this I have developed many other diseases. Right now we do a mixture of natural things and medicine to try and control it and slow it down as much as possible. Chemo is one of these medications. I will explain that treatment in another post. It is a everyday struggle and we pray everyday that there will someday be an answer that will help. 

       Lupus is not black and white at all. It is a mixture of colors and shapes and sometimes it mixes those colors and makes new shapes. Some of the areas I have affected from my Lupus are my stomach (gastroparesis and more

), thyroid dysfunction, inflammation on my brain, early kidney disease, arthritis, skin rashes, heart disease, lung issues and some more things but the list is getting long. With each one area it can change on any given day. It makes it hard to treat and hard to know if it is Lupus or if it is something else. However I have doctors who watch over and really do care about me. I am thankful for that. We would love to find specialist for the Lupus however because I live in NY and have A NY based insurance it makes it almost impossible. However I know that God is watching over me and taking care of me no matter what the situation.

      One of the hardest things about this disease is the fact I do not look sick most of the time. I rarely will tell you how I really feel. It is much easier to smile and say I am okay. I am always in pain, however the pain level changes. Some days are good days and I have no problem getting around and other days I can barely drag myself out of bed. Each day is a new challenge and I welcome it. I live my life as if tomorrow is not known because really it is not. I push myself to hard and I pay for it. I am learning and I thank God everyday that He put people in my life to guide me and help me through this thing. I am so thankful for everything that God has given me and even though I have this disease I am also thankful for it. It has taught me to live everyday and be thankful for the small things. It is my goal to live my life to the fullest and hope that my kids see this and do the same thing for their lives. I will try my hardest to update this and keep you all informed and I will write more about my treatments as many have questions about them. This however is already so long and I have probably lost most or you about half way through it, lol. I can be very long winded, ask my kids. So this is a little bit about me and I hope that you come back to find out more.