Apitherapy
Monday, Mom and I visited the Bee Lady of Waldorf, Maryland for some good old-fashioned apitherapy. This is a fancy word meaning "getting stung by bees." I got six bee stings. It really wasn't so bad. Each sting burned quite a bit for the first five minutes or so, and then I forgot about them. The lady herself, Pat Wagner, has MS (multiple sclerosis), and has experienced remarkable healing due to bee stings. Something in the bee's venom activates the body's own resources to come heal problems. GW is even doing a study with bee stings and MS that has shown improvement in 60% of patients. Now, Wegener's is a little bit different, and to be honest I'm not sure I felt any improvement. But it certainly was an interesting experience. Pat's husband, "Sting Ray" takes care of the honeybees. They live in a hive in the kitchen. On Monday's and Fridays, Pat and her husband open up their house to patients to come be treated. There was a man there when we visited who had MS and received maybe 20 or 30 stings! He was very stoic. The bees die after stinging and maybe 1/3 of the bees taken out to use do not sting for one reason or another. I feel a little guilty about this, but there are thousands of bees in a hive. The stinger is left in the skin for at least twenty minutes so all of the venom can be injected. It was hard to resist the urge to scratch out the stinger! Even though BVT (bee venom therapy) didn't help me, it was neat to learn about it and MS.
I am still very sick. I think many people do not realize the extent of my illness, or even exactly what it is or means. I have Wegener's Granulomatosis. It is an autoimmune disorder, meaning the immune system is responsible for attacking my body.
The treatments available for WG focus on shutting down or debilitating the immune system. WG is a type of vasculitis, meaning it causes inflammation of blood vessels. It has affected my ears, sinuses, gums, joints (hips, wrists, knees, ankles, etc.), trachea, nose, lungs, and skin. Right now, my main problem is my lungs. My left lung is collapsed and has been since October. The left main stem bronchus was narrowed so much by WG, that finally no air could enter the lung and it shut down. I have had many bronchoscopies in the past where my surgeon has been able to dilitate the bronchus so that air can get in. I have had five bronchoscopies since October, and none of them were successful. In fact, I have gotten significantly worse after each one.
Most notably, on February 2nd, after a bronch some kind of infection or WG (still unknown) developed in my right lung. I only have one lung left so this was bad and I was really sick. The surgeons tried another bronch to figure out what was going on in the right lung, only this time I was only sedated and not under general anesthesia. I woke up during the procedure and sat up on the table, "I can't breathe." It was pretty awful. So they sent me back to my room. General anesthesia was too risky at that point. Luckily, after lots of antibiotics and other medicines, my right lung has gotten pretty much back to normal. Lately, the lower lobe of my left lung seems to have woken up a little too! I have periods where I squeak quite a bit, meaning air is easing it's way through tiny passageways. I still do not know if I will have to have the lung removed. I don't think people with one lung can run. I want to run again one day!
Although my left lung seems to be doing a little better, every time it opens or closes, it is extremely painful. In addition, the symptoms of my WG are not gone. If not properly controlled, WG could slowly be narrowing other air passageways in the right lung, or attacking my kidneys, sinuses, or ears. I am having joint and sinus pain even on 60mg of prednisone and 150mg of azathioprine. Soon I will begin taking cyclophosphamide again. I took it in the past for a brief period of a few months. Most notable about cyclosphosphamide (CYC) are it's side effects. Among other things: hair loss, sterility, and cancer. I am nervous about taking this drug long term, but optimistic about it's potential benefits.
Things could be looking up for me. Maybe not right now, but some time in the future my fortune has to change. Because we're all on fortune's wheel, right? My left lung will open up... and the WG will go into remission, and I'll get a tympanoplasty so I can hear again and soon I'll be runnin' around like a deer :D If there's one thing I've learned from this illness, it's to be greatful for what I *do* have. Health is not a right.
Hah. Ok. Well um that was a nice long entry.
I am still very sick. I think many people do not realize the extent of my illness, or even exactly what it is or means. I have Wegener's Granulomatosis. It is an autoimmune disorder, meaning the immune system is responsible for attacking my body.
The treatments available for WG focus on shutting down or debilitating the immune system. WG is a type of vasculitis, meaning it causes inflammation of blood vessels. It has affected my ears, sinuses, gums, joints (hips, wrists, knees, ankles, etc.), trachea, nose, lungs, and skin. Right now, my main problem is my lungs. My left lung is collapsed and has been since October. The left main stem bronchus was narrowed so much by WG, that finally no air could enter the lung and it shut down. I have had many bronchoscopies in the past where my surgeon has been able to dilitate the bronchus so that air can get in. I have had five bronchoscopies since October, and none of them were successful. In fact, I have gotten significantly worse after each one.
Most notably, on February 2nd, after a bronch some kind of infection or WG (still unknown) developed in my right lung. I only have one lung left so this was bad and I was really sick. The surgeons tried another bronch to figure out what was going on in the right lung, only this time I was only sedated and not under general anesthesia. I woke up during the procedure and sat up on the table, "I can't breathe." It was pretty awful. So they sent me back to my room. General anesthesia was too risky at that point. Luckily, after lots of antibiotics and other medicines, my right lung has gotten pretty much back to normal. Lately, the lower lobe of my left lung seems to have woken up a little too! I have periods where I squeak quite a bit, meaning air is easing it's way through tiny passageways. I still do not know if I will have to have the lung removed. I don't think people with one lung can run. I want to run again one day!
Although my left lung seems to be doing a little better, every time it opens or closes, it is extremely painful. In addition, the symptoms of my WG are not gone. If not properly controlled, WG could slowly be narrowing other air passageways in the right lung, or attacking my kidneys, sinuses, or ears. I am having joint and sinus pain even on 60mg of prednisone and 150mg of azathioprine. Soon I will begin taking cyclophosphamide again. I took it in the past for a brief period of a few months. Most notable about cyclosphosphamide (CYC) are it's side effects. Among other things: hair loss, sterility, and cancer. I am nervous about taking this drug long term, but optimistic about it's potential benefits.
Things could be looking up for me. Maybe not right now, but some time in the future my fortune has to change. Because we're all on fortune's wheel, right? My left lung will open up... and the WG will go into remission, and I'll get a tympanoplasty so I can hear again and soon I'll be runnin' around like a deer :D If there's one thing I've learned from this illness, it's to be greatful for what I *do* have. Health is not a right.
Hah. Ok. Well um that was a nice long entry.