First blog EVER......here goes. I have always tried to be a positive person. I believe in Karma. You send positive thoughts out, you get positive in return. When I got the first diagnosis of cancer, my first thought was "Ok, we can beat this and get on with life". The last two months have shaken me to the core and I'm having trouble finding the positive.
New diagnoses: Common variable immune deficiency. This is genetic. It means my body produces immunoglobulin, but it's empty. So my immune system is not functioning properly. They test this by giving you a tetnus shot and a pneumonia shot and see if you develop antibodies. I didn't. I could get infusions of immunoglobulin to supplement my own, but they cost over $3000 a month and Medicare will not pay for them. So they have put me on an antibiotic rotation to fight the infections that I will get because I can't fight them off. Every 3 weeks I take a different antibiotic for a week. I have to avoid people with infections which is darn near impossible unless I want to be a recluse. And the antibiotics give me yeast infections which requires another medication (Diflucan). They also think the yeast infections created the conditions that caused my vaginal cancer to grow. So I have to have a colposcopy every 3 months to test for new growth so we can catch any cancer early. In addition, I have to take a probiotic to replace the good bacteria that I am killing with the antibiotics along with the bad bacteria.
COPD: I lived all my childhood with two parents that smoked. I had lots of bronchial infections and pneumonia growing up. I also have asthma. The infections have damaged my lungs which is irreversible. I am now on 3 liters of oxygen at night and will eventually have to use it all the time. They have also put me on prednisone (a steroid) to help keep my lungs open and functioning. The prednisone is kicking my butt with side effects. I now look like the Pillsbury doughboy, I can't taste food and it is causing problems with my digestive tract. And a lung transplant is not ever going to be an option, because my compromised immune system would reject the new lungs.
Rheumatoid arthritis: This is also thought to be genetic and exacerbated by my immune problems. It's currently mild to moderate and added to my medication list. The medicine seems to be controlling the pain well and this has been the easiest of the new problems to deal with so far.
Premature Ventricular Contractions: My heart has decided along with all this other nonsense, to beat irregularly. It may be symptomatic from all the new medication, it may be the result of all the infections or it may be the strain my heart is dealing with everything together. They tried to do a chemical stress test on me (my lungs won't handle the regular stress test), but the chemicals threw me into an asthma attack because I was allergic to them. So they don't know exactly what is wrong with my heart, but added another medicine to regulate the pvc's.
I have been collecting doctors along the way as each new problem came to light. I now have a cardiologist, a rheumatologist, an infectious disease specialist, a gastroenterologist, a pulmonologist and a general practioner. In addition, I am taking 10 new medications which has increased my pharmacy bill to over $3400.00 a month.
Ok, there's my mountain......now how do I climb this one? Please, I'm not asking from sympathy. It will only allow me to keep wallowing in self pity. I am hoping by getting all of this out and making room for the positive thoughts to come back, that I can learn to live with it instead of die from it. But anyone brave enough to have waded through this whole blog, I could use some friends. You guys have been terrific. I say enough foolishness for blog number one. Send in the clowns....... `