This first real post will be long- This is your warning- LONG.. I doubt I will write like this very often. But I started low dose chemo yesterday and feel a bit icky when I am up- so I feel like writing..well, typing. My hands hurt too bad to write..yes, that is because of the arthritis.. my hand look like those of an 80 year old instead of a 40 something, hehe, year old.
I have never hidden the fact that I suffer from auto immune problems, but have also never been one to talk in depth about it.
I started have symptoms years ago. It took a long time to get even a few answers. I saw many doctors. Most helpful, at least one- not. I actually had one Dr who read my blood work- told me he didn't believe the results , and to go have bio-feedback and take more vitamins, I left balling my eyes out. With that said, I am blessed to have seen many other great ones. If you are not getting answers, or don't feel like your Dr. listens- don't give up!! It is easy to do, but DON'T. There is someone who will help you.
I hope to share my story, letting people know how very hard it is to live with these diseases- but that it is possible to live better and not bitter. It is a struggle for all involved. But there is hope , and knowing that God has a plan for us all can help.
I guess I should start by saying my primary diagnosis is Lupus, which is causing inflammatory arthritis.. I have also been told I have Fibromyalgia, but truly I think it is the Lupus. Fibro was the first diagnosis, and I think it was just easier to do, but over the years, the other things have made themselves known. In addition to these, I have 4 blood clotting factors that I will talk about another day:)
If you want to learn more about what Lupus is , here is a link :http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2232&zoneid=523
It stinks, and is frightening to read about. But- it is what it is.
I can say this has been a really difficult year. I have basically been injured or sick 10 months this year. I just can't fight things off as well, and my joints have been giving out - causing injuries.
They day we came home from Disney- I tore my calf muscle- yikes!! That was not fun, matter of fact it hurt, BAD. Like, I think I have been shot- where is the blood- how could I have been shot- but it feels like it , bad!
Then my ankle gave out in a session( I am a photographer), and I broke my foot. Finished the session, but ended up in a cast for a month... That kind of stunk too.
Next, I woke up in severe pain,and looked like someone had burned me on my rib cage.. spent a day in the ER- to find out I had Shingles- yes, they are miserable ,too. The commercials to get the vaccine - yes, do it.
Then just for fun, on the way out the door to take my kids to a college visit, I fell and bruised the @#$% out of my hip. That hurt for about 6 weeks.
So- that is the list of big injuries. This doesn't include the flares- a fun word for when your disease is kicking your bottom. There are days I can barley bend my hands or walk..
But with all this - I can say, I am blessed. I will not let this disease define me.
I may have Lupus, but it is NOT going to stop me.
Oh yes, the chemo thing. I have tried lots of meds the last few years. I am sensitive to a lot of them . Have had some really bad reactions to more than one. And basically have reached a point that it was time to move on to the big guy. I will be doing 1 injection a week ( needles don't bother me, so am giving it to myself). It is a low dose, much lower than they use for cancer..but can still have nasty side effects. Here is the warning when you Google it "Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only take methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.
Nice , huh? BUT, again, the benefits out weigh the possible side effects. I will let y'all know how it goes. So far, not too bad. Actually took Miss G to her riding lesson, but other than that have slept a lot and kind of felt like I just got off a roller coaster.. if it doesn't get worse- I am one of the blessed ones.
OK- I guess that is all for the moment. I feel like I am rambling, and don't want to lose the one or two of you who actually read this on my first post... So, I wish you all blessings and happiness- until next time
L
