My Vasculitis Story: Chapter four

As you probably remember from the last chapter, my goal was to get to Travis AFB to a rheumatologist who could take over my treatment. When my husband and I reached Travis AFB, we had to reschedule the appointment because of the problems I had had with the meda-vac.

We drove from Las Vegas to Travis AFB (outside San Francisco), which took several hours. I slept while my husband drove. We stopped to eat when I needed to take my medication. When we reached the base, we realized that we needed to find a place to stay. The rheumatogist's nurse was very sure that we would have to stay awhile so that I could get my infusion and get the proper labs and tests. My rheumatolgist wanted to make sure that my travels had not derailed my treatment.

The nurse gave a list of housing options on and off the base. So the next hour we went from place to place looking for an open room or apartment. Finally, we found the Fisher House next to the hospital. They gave us a room. If you know anything about the Fisher House, they have homes at several of the bases so that military families can see their loved ones in the hospital. They don't charge for the service, but do take donations. In my case, they were very happy to help us. My husband had just lost his job, I was ill, and it was plain that we wouldn't be making much money anytime soon.

So if you ever want to donate to a good charity, the Fisher House is one of the best.

Anyway, my husband and I made ourselves useful around the house. In this house there were only two people as staff so they were grateful when I made sure that the dishes were loaded into the dishwasher and that my husband emptied the garbage in and around the house. They even gave us each a polo shirt for our help.

As for the medical services, my rheumatologist lowered my prednisone to 80 mg. and she was able to get my I.V. infusion for the next day. She asked us to stay at least a week so that she could make sure that I was tolerating the infusion. Also, the bad news was that she was leaving the military and starting up her own office back East. She found a doctor in Las Vegas who could continue my treatment.

Just a note. By that time I had been on 100 mg. daily for three months. I stayed on 80 mg. for another three months before I started having severe problems with this medication.

As I look back, the time at Travis AFB was idyllic. I slept, ate, walked, and watched the mist settle on the hills outside the base. Sometimes I had double vision and sometimes I was nauseous, but I was very sure that I would be better soon. When the week passed, I was happy to be back on the road to Las Vegas - not because it was better in Vegas, but because I needed to be warm. I was cold all the time.

Another good news that I received at Travis AFB is that my creatine levels had lowered to 3.0. It is the small things that make you happy when you are this sick.

When we reached Las Vegas, I had to go through tons of hoops before I finally got my doctor even though the rhuematologist from Travis AFB had called ahead. In fact if she had not called I might have had troubles getting a doctor. Soon my doctor realized that I needed to stay away from the general population. Whenever I needed to go to the base hospital near North Las Vegas, I went straight to the Internal Medicine section.

I became scared when my four weeks between infusion was almost up and I still didn't have anyone to give me the infusion. Finally I was given a referral to Dr. Middleton, a rheumatologist in Las Vegas. He had way too many patients, but he did his best for me. He scheduled an outpatient infusion in time.

I want to note that infusions became less and less pleasant for me each time I went through them. My rheumatologist dropped my infusion from 1400mg to 1200 mg because I had lost so much weight. But, after about eight hours after each infusion I would vomit several times before I settled down even though I was given medication to stop the vomitting. By the time I had the sixth infusion, I dreaded going for the infusion.

What helped me most through these trying times was a little dog called Herky. We were staying at my brother's house, and little Herky (the house dog) would cuddle up near the back of my legs. I would fall asleep comforted because I knew that this dog guarded my sleep. I was terrified of sleeping because it was too much like dying. It took me a long time before I was okay with falling asleep.

Also, as the months wore on, my mind began to disintegrate. I lost my short term memory. I became paranoid. I would scream and cry around six o'clock every evening. My husband became afraid of letting me alone. I had thoughts of suicide. My doctor tried to calm me with xanax, but it didn't work.

Then I began to get fuzzy. There is a lot that I don't remember in that year. My behavior was very similar to someone who is having problems with dementia.

One time I thought I had overdosed with one of my medications. My husband took me to the hospital. After a blood test they told my husband that I had not taken any of the medication. They wanted me to see a psychiatrist. I was so upset with the ER doctors and my husband that I tried to jump out of a moving vehicle. My husband was trying to drive and holding my arm. The only thing that saved me was I was too weak to do anything.

Another occasion I walked away from him and he couldn't find me. He was frantic. I had to be watched all the time.

Also I would go into these fugues where I didn't know anyone or what they were saying.

Finally, my husband talked to my internal medicine doctor... And I went into a fugue state in front of him. It scared the doctor so he called my rheumatologist immediately. After they talked, my internal medicine doctor told my husband that I had been on high dosages of prednisone too long. They immediately dropped my medication to 60 mg.

I don't know the exact date, but I think it was around the beginning of August when they started dropping my prednisone. When I went to see my family at a family reunion around the 19th, I had been dropped to 40 mg. It was at that dosage that my personality started to come back. It wasn't until I was weaned to 5 mg or so that I became myself again. And in many ways, I wasn't sure if I was real or not.


This picture is at my family reunion with my husband. If you notice I have all the classic signs of high prednisone use. My face is tight and I have a bulge in the middle of my stomach. My hair came out in clumps from the cytoxan. This is after about eight months on high prednisone usage. At the time I couldn't look into a mirror without crying.

As I began to get weaned off the prednisone, I began to grieve for my lost health. As my husband said, because I had been put on heavy medications, my mind had not had the ability to accept the changes so it took awhile for my neurons to fire again ... I think I cried a lot at that time.

Also I wasn't sure if I would ever be able to write again. I had lost everything. Thankfully I still had my husband. But, even he was really grateful when I began to come back from the abyss.

(story continued tomorrow)