Saturday, September 25, 2010

A little bit of background.........

So, it is kind of hard to start in the middle of a book...but that is sort of what is going to happen in starting up this blog at this stage in my life.

I can't go back and fill you in all everything that has happened in my life and brought me to this point but I can give a little bit of info to get us started.

I have already had many challenges in my life, I know everybody does. I am married, I have two sons, I did work but now I don't, I am adopted, I did not have the greatest adoptive home and yes I survived it, I have searched, I have found and struggled through that roller coaster of my life and survived it as well. I have a rocky marriage much of the time and still struggling through it. I have always had health issues and just chalked them up to life, and stress, and whatever seemed to fit at the time.

Then 18 months ago I got the sickest I have ever been in my life and as bad as it was it was a good thing as it finally brought me to my diagnosis of Lupus. So, In a weird way I am grateful I got so sick.

I am now learning all I can to live and survive LUPUS along with all the other regular challenges of life that we all go through.

I needed a place where I can just write down my thoughts, feelings, ideas, goals, struggles and triumphs..a little bit of therapy for me.

will it help ? I don't know. Will it hurt ? most likely not. Lupus may not be the main topic in my posts but it will most certainly be a factor in them. On how I handle things or view things etc. Do things or don't do things. I don't want it to run my life but I know it is part of my life.

So, where do I start...well for today..just to help set the pace...I have been in this flare for about 18 months or so and am seeing a rheumatologist ( rheumy for short in here) and I am taking a bunch of medications since last february and I am just now really starting to see some great progress.

I take a diaretic and blood pressure meds for my chronic high blood pressure that I have had now for over 10 years ( did not realize it was a symptom of lupus).
I also take celebrex for muscle and joint pain, which started 18 months ago( another symptom of lupus)
I take plaquenil, which is an antimalarial drug that is often prescribed to people with lupus to help control their lupus flares. It has minimal side effects and can help protect your internal organs. My liver was being damaged and since being on the plaquenil it has improved significantly.

I take predisone, a steroid, for the wicked pain , it is one of those drugs you always have a love hate relationship with because it is fact acting for pain relief but brings with it so many negative side effects. Like weight gain, swelling, moon face, emotional changes, sweating , it can lead to bone loss so osteoperosis, and many many more. So doctors generally try not to have you on it long term. It is a drug you need to ween off slowly so this can take some time. I have been on it since february and am getting down.

I also take Imuran, this is a very strong immunosuppressant drug. Because lupus is basically an illness where your immune system turns on itself and begins to destroy healthy cells and organs in your body. We need to stop this and we do it by suppressing the immune system with drugs. This is another one of those double edge swords.
As you lower the immune system it slows down the lupus and the destruction to your body butit also leaves you wide open to catching colds, flues, infections because your immune system is now not there to fight them off. So, you need to always be listening to your body and aware of signs of these illnesses if they come.

Because I take all these medications I also need to do blood and urine testing every 30 days to be sure my kidneys and liver etc are doing okay as all medications can create a level of toxicity in your body that end up doing more harm than good over time.
So far I am doing well in this department so that is fabulous.

I think that is enough for now on that stuff, it should be enough to help you grasp a bit of what is involved in daily medication rituals to deal with my lupus as it is at this point in my life.

I have spent the better part of the last 6 months accepting , learning , and coming to terms with what having lupus means and what things may or may not happen so I can be prepared. I am working very hard to try my best to maintain a positive outlook of all of this.

Some days are harder than others of course as life still goes on and regular daily things need to go on.

So I think I will stop here for now and write more next time.

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