5 of 16

Write now Article Tools

Page 4 of 4

be hard to get through my insurance and that even once I got it not to expect miracles. He told me that IF it worked, it would take several weeks. Several more weeks that I could carry Dorge the gorilla around on my chest. But at least there was again a glimmer of hope that something might help.

The doctor was right the insurance company didn't want to OK the drug. It was something called Ranexa and they wanted me to take a Beta-Blocking blood pressure medicine with it. The problem is - while I have high blood pressure in the blood vessels in my lungs - the blood pressure throughout the rest of my body is low. The doctor was afraid of dropping it too low which would cause other issues. We finally agreed to add a very low dose beta blocker and the insurance company approved the medication. I started it on a Friday night and by Saturday morning the room was spinning and I was extremely nauseas. I spent that day and most of the next day in bed. But, amazing things were also starting to happen. Dorge the gorilla, was going away. It was getting easier to take a deep breath! So much for waiting 2-3 weeks for the drug to work. Finally, a little bit of light at the end of the tunnel.

I'm not 100% but I am 100% better than I was if that makes sense. I still have Lupus, Fibromyalgia, CFS and pulmonary hypertension. None of those will go away. There is no cure. I struggle much of the time to make it through the day. I move a little slower now, wince in pain a bit more and crave rest. I do what I can, I'm still working. I have no choice. While my illnesses qualify for Social Security disability, in Florida you have to have not been able to work for at least 6 months. That's not an option or I'll be living in the street. So I work, two jobs as I have to pay the bills. I take my meds and hope for few side effects. I go to the doctors every 2 months, more often if I'm in a flare-up.

Is life hard? Yes it is. Do I feel like giving up some days? Yes, I do. Will I? No! I have too much here to hang onto and a good support system to help me through the bad days. The diseases will take their toll, I know this. But I'm not going to help them! I will fight as long as I can, hopeful that with each passing year, more research is being done and that maybe, just maybe, some day there will be more help and possibly a cure. I hug my son, tell my partner I love him and pet my dog a lot more often. I try to laugh more every day. It helps! I take comfort when I need it and give it when I can. This journey is far from over.

Learn more about this author, Vicki Patterson.
Click here to send this author comments or questions.

• << previous page
• 1
• 2
• 3
• 4

Add your voice

Know something about Testimonies: Living with chronic fatigue and immune dysfunction syndrome?
We want to hear your view. Write now!