Always Look on the Bright Side of Life

I did aerobics today for the first time since fall of 2008. This is a real benchmark for me. I’m getting my life back, one step at a time.

Once upon a time I did an hour of strength training/aerobics three times a week. I tried to keep doing it, but I couldn’t hang onto it. My movements were too stiff and slow to keep up, and the worst part was the neuropathy in my feet. They would get pins and needles in them after being on them for just a few minutes, and it got worse the more active I was. I still get it, but not all the time, and it’s not as bad. If I get off my feet for a few minutes it goes away.

I’ve been dreaming about doing aerobics lately. It’s not like I was some sort of fitness freak, I never really LIKED aerobics, but I liked how I felt after wards. It kept my weight down and gave me more energy and it really helped keep anxiety and depression at bay. I haven’t really been missing it, I’ve replaced it with yoga and I really like doing that. In fact I had pretty much resigned myself to the idea that that was something that I used to do. When I started dreaming about doing aerobics I figured it was the cosmos telling me something.

I’ve been trying to get my lungs working to full capacity again. A year after the pneumonia/pleurisy began I still can’t take a full breath. I have a ritual of blowing up a balloon twice every day. I figure that I have to ask from my body what I want my body to do. I’m not going to just be able to breathe if I don’t make it happen. So I figure it’s the universe telling me that if I want to breathe, it’s time to start exercising my lungs more, to push it.

So the aerobics I did today was a drop in the bucket compared to what I used to do. I have on VHS these tapes from an aerobics show that aired in the 80’s for half an hour. So it was a warm up, eight or ten minutes of aerobics, eight or ten minutes of floor work, and that’s it. I used to do 25 minutes of actual aerobics with warm up and floor work taking up the other 35 minutes. Well, I guess it’s not quite the first time since fall of 2008, I did try once maybe nine or ten months ago. I was so winded I couldn’t do the whole eight minutes, and I had some sort of relapse right after that. I got through it today. I was winded, but not dying like I was that other time. Maybe I can start to add that back into my life, and get even closer to whatever normal is.

During the whole ordeal of thinking I had arthritis and having all the meds have adverse effects I always knew that I would get through it. I can’t explain it, but it would happen during my meditations. It feels like I have a cheering section telling me that I can do it, I’m going to be all right. I always knew that I would be okay. I was determined that I was going to get my life back, and today I can say that I do have it back. I can do in a day almost everything that I could do before I got sick. I pictured what I wanted my life to be like. I have on my music stand a list of priorities, so I see it every day. The things I want out of life are to breathe, walk, ride my bike, and play the violin. Those were the things I was most in danger of losing, and I made sure I didn’t.

A friend of mine in my pottery class said the other day,”We had a shell, and now we have a person back.” My best friend said the other day that that whole year I looked frail. It blows me away to hear that, I was so inside myself busy trying to survive it didn’t occur to me that anyone really saw. I guess they did.

Another thing I have on my music stand so I see it every day is “Live each day as if you already have the things you want”. I want to not have Lupus, and I try to remember to live each day as if I don’t have it. People with Lupus don’t park their car a few blocks away and walk, so that’s what I do. If I’m wondering if I have the stamina to do things, I just pretend I don’t have this and go about my business. It’s working so far!

I just sneezed! With no huffing and puffing first, looking like a cat trying to hork up a hairball!

Hey Now, You're a Rock Star

I started meditating after my dad died in 2004, so I had been practicing for four years before this all started. If I hadn’t had that in place I’m sure I wouldn’t have made the recovery I’ve made. It’s hard to explain it, but when I meditated I just knew I was going to be okay. I knew that this was going to pass, that I would get my life back. I knew when the right medication was going to happen. I didn’t know about the change in diagnosis, but I knew the next drug was going to be the right drug. And I’ve always had in my mind the time frame of a year and a half. From when, I never knew for sure, but it’s been a year and a half from the start of my symptoms.

I think the whole reason I’m doing as well as I am is because of my strategy of pretending I don’t have a chronic illness. I live each day as if I don’t have Lupus. I don’t read up on the latest research or the possible symptoms, I’d rather be ignorant. Let my doctor think about that stuff, that’s what I pay him for. I am fully expecting to go into remission, and I live like that has happened.

So I spent a year of my life feeling like I was suddenly 84, instead of 44. It was a decline that took about six months, so when I get asked if it was fast or gradual I’m not sure what to say. Quickly gradual, I guess. I can really empathize with my 84 year-old mother now. I know why little old ladies carry their purses in the crook of their elbow. It takes too much effort to sling it over your shoulder, and it hurts, and holding it in your hand hurts your fingers. I was leaving the lids off my pill bottles because even the easy open ones were too painful to open. People asked me if I was journaling, but it hurt too much to hold a pen or to type. Besides, the effort of getting up to go to the computer or to get a notebook was just too much. I would see little old ladies with walkers and get jealous that they earned walking like that and I didn’t. I stopped taking my violin to teach lessons, mainly because I couldn’t carry it anymore. I also wasn’t able to just pick it up and demonstrate what I wanted them to do.

Man, I think about that time, and the day I had today. After Easter brunch with friends, I came home and went on a 14 mile bike ride. After a little lunch I went out and weeded a flower bed for a couple of hours. Then I did a few chores round the house. Now I’m writing this.

I wish I had documented my regaining my life. About the time that I went to the ER I was just getting tired of not having my life. It was pissing me off that I couldn’t do anything anymore. Tom was doing EVERYTHING around the house. I couldn’t grocery shop, I didn’t cook, couldn’t go down the stairs to do laundry, so Tom did it all. Sometimes he had to help me dress or get out of the bathtub. Those were low times. I am so lucky to have him, he just did what needed to be done. I’ve been told that I was brave. I just survived. Tom was the one who was brave, watching his wife lose her health and not being able to do anything about it. It must have been rough on him. He’s amazing.

At some point I decided that I had to try to get some movement back in my body. I started with some very slow yoga, I would stretch my arms up (mountain pose) and do a forward bend three times, and that took about ten minutes. I gradualy was able to add more poses, but it took a long time before I could get down on the floor and get back up again. My walks started with a block and a half before I had to turn around. My calf muscles felt like I had walked miles. Every time I would start to build up my stamina, something would come along and knock me back. First was having to stop the anti-inflammatory because of liver failure, so I was on no meds for a couple of months while I got that out of my system. Then I got pneumonia. Then I had to stop the next med because my white blood count dropped too low. So again, no meds for a couple months. Then they tell me I still have pneumonia. I’d get to where I could walk ten blocks, then I’d have to go off meds and lose any ground I’d gained. It was frustrating.

Every summer we take my neice to the Rennaisance Festival to see my good friend who plays the Queen. It’s so much fun to know the Queen, and to have my nine year old neice get special treatment from royalty. I was bound and determined to be able to go to the festival that summer, and I started “training” for it in May. I would try to add an extra block to my walks each time so I could build stamina. As luck would have it, I started the prednisone the week we were going, and I was Super Josie! I was able to walk the whole day, and it was great.

The following weekend Tom and I had planned to go to Glenwood Springs for his birthday. I wanted to take him somewhere where he could get waited on instead of having to wait on me. I was feeling great, and we rode our bikes and played miniature golf and soaked in the hot springs. I was still feeling like I’d been handed a death sentence, and that weekend I decided that I wasn’t going to be a Lupus patient. That life would be one of worrying about what the disease is going to do next, sitting in waiting rooms and discussing symptoms and meds. I’m going to have an active life, one where I can ride my bike or walk a couple of blocks to a restaurant. One where I don’t always have to think about whether or not I can do something. I’m just gonna do it.

That weekend was a turning point for me. It has been helpful to follow the buddist doctrine of mindfullness, which is really just be in the moment. I know I feel good now, so feel good now. Don’t worry about what might happen. It’s not always easy, and of course I get scared once in a while, but I figure I pay my doctor good money to worry, so let him do the worrying for me. Stress has a huge impact on how I feel, so if I can not stress about what I might feel like I feel a lot better. And like anything, it gets easier with practice. The more I don’t stress about it, the easier it gets to not stress about it. It’s like AA, one day at a time.

Going Mobile

It’s been happening a lot lately, people saying to me “you sure look a lot better than you did!” Some tell me I looked like I was beat up with a baseball bat. It’s nice, but a little disconcerting. It happened today at the grocery store. I ran into one of my neighbors, people who we’re friendly with but not close to, and she was telling me how they could tell something was wrong. She described watching me walk slower and slower, and becoming more and more stooped, and she said I got whiter and whiter. Every time she saw me. And she commented on my weight loss. She said she wanted to ask if everything was all right but felt uncomfortable doing so. She didn’t need to feel uncomfortable, I would have welcomed the concern, but I can certainly understand how she felt. I wouldn’t have walked up to someone and asked them if they were okay, either.

It’s kinda weird, realizing how much my decline affected people. I was just trying to survive it. I didn’t notice at the time the effect it had. It must have been hard for Tom to see me like that. Sometimes he would just watch me go through the process of getting up, and I could tell he wanted to just make it go away. He’s told me numerous times that it’s nice to have me back. It’s nice to be back.

It’s been a year since my first visit to the Denver Arthritis Clinic. My first visit they did a full work up, blood tests, X rays, detailed history, etc. About a week later the doc called and told me that I tested negative for Rheumatoid Arthritis and Lupus, but there was an indication of inflammation in the blood work. I don’t know exactly what he was seeing, but it meant that there was definitely something systemic going on. He did tell me that I tested positive for the genetic marker for Lupus but not the antigens or antibodies or whatever they are. I’m a musician, not a doctor. Anyway, since I’ve had a history of psoriasis, he diagnosed psoriatic arthritis. It’s very similar to rheumatoid arthritis in symptoms and treatment but the cause is different. It’s also an autoimmune disease where the immune system attacks your joints. Great. What was going to happen to my music career?

So he started me on a heavy duty anti-inflammatory. Come back in six weeks. It will take about three months to tell if this is the right med. Okay. I have a colleague with RA, and she told me it took them a couple years to get the meds dialed in. I always knew I would be okay, so I was ready for it to take some time to find the right med.

I thought I was getting better, but six weeks later Dr. Gensler didn’t think the improvement was enough. He thought it should be better, and we could keep trying this but he didn’t think it was the right med and let’s try something else. The next step was an immunosuppresant, and it’s hard on the liver. So I had to have a liver panel before starting it. Okay, standard procedure.

Turns out my liver wasn’t working right after the anti-inflammatory. Mild liver failure. Take nothing for two weeks and we’ll recheck. Still mild liver failure. Two more weeks with no meds and we’ll recheck. So I had to go about six weeks with no meds at all while my system stabilized.

Meanwhile, I couldn’t go up and down the stairs very well anymore. I had to take them one step at a time, like a two year old. I couldn’t lift anything very heavy, and it got to where I needed two hands to lift a glass of water. I was tired all the time. I thought the constant pain was wearing me out, and maybe it was, but now I know that fatigue is a symptom and I wasn’t aware that what I was experiencing was called fatigue.

I had pain all over. It also would move around. For a few days my jaw would hurt so much I could barely eat. Then that would go away and my feet would hurt too much to stand for more than five minutes. My arms and legs were always stiff and achy, like I had done a triathlon or something. I was getting this weird burning/itching sensation in my hands and feet. It would happen for an hour or a day, sometimes both feet, sometimes one hand. It was strange and unpredictable. The things I was feeling never stayed long enough to tell the doctor about, and they were so strange I couldn’t describe them. I told him about my feet feeling like they’re falling asleep while I’m walking, and he didn’t have an answer for it. So I just waited to see if the next med would help.