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.

Everything's gonna be fine, fine, fine

I’ve made a discovery.

Sitting around feeling crappy makes me feel crappy.

If I feel crappy, get up and do something. Might as well be productive and feel crappy. If I Still feel crappy after an hour, take a nap. At least I tried.

March 27, 2010

It’s been a lot of up and down lately. Really up, like running up and down the stairs up, and really down, like needing to be helped up the front stoop. At least the bad days don’t last very long. I wonder if those are the “flares” I hear about. So far they haven’t lasted more than about four days and then I feel pretty good again. I was supposed to go to no prednisone, but at the time I was supposed to do that I was really sore, so I didn’t. Then I got pretty good, and I thought maybe I should do it, and then I got sore again. I keep trying to figure out what it is that makes me sore, and the common denominator always seems to be stress. So now I’m trying to let go of Ego, that part of you that tells you that you don’t measure up, you should’ve done it the other way, that’s not good enough. I find that when I can let go of Ego I feel better. Most of the time the pain comes when I have to be around my family. I love them, but they’re the source of my never quite measuring up.

So, after my little ER visit, I went home with percocets and tried to breathe. It’s interesting, if you can’t get enough air in your lungs a sneeze just goes away. I didn’t sneeze for three months. I still don’t always sneeze when I want to, when I do I see it as a sign of improving health. I sneezed this morning! A sneeze is such a wonderful thing!

I continued to lose weight, have no energy at all, no appetite, muscle and joint pain, and be extremely out of breath. After a month I went to my internist, who told me there was nothing wrong with my lungs, so bed rest for five days and then we’ll see. I had a show at the Gaylord Street Fair the next day. My trusty sherpa, Tom, carried and set up every piece of equipment, and I just played. People told me I sounded great, and I hope I did. I know it sure felt good to be playing for people, no matter how awful I felt. So after the gig I did the bed rest thing. Boy, that pissed me off. The last think I wanted to do was be forced to “only read and watch TV”. But it seemed like I was feeling better, so I tried a few more days. Then I got really sick of it and decided to get out of bed anyway.

Things just continued. I had an appointment with Gensler, the rheumatologist, and my white blood count was dangerously low so he wanted me to stop the methetrexate. So here I was again on no medication at all. I was really getting sick of not being able to breathe. I got winded walking across the lawn. Before all this I did aerobics three times a week. So I became more vocal with my doc. He was going to put me on Embrel, but they tell you that there’s an increased risk of TB so have your lungs checked.

They sent me to have another X-ray of my lungs, and the X-ray tech told the doc that I had pneumonia. Still! I’ve had it for three months! No way. And then we were talking about it, and he said he wanted clarification because I wasn’t acting like someone who had pneumonia, I was just out of breath. Turns out I still had pleural effusions. I’m not really sure if that’s the same as pleurisy, but it was keeping my lungs from fully expanding. That’s when he called and told me that pleurisy really doesn’t go along with arthritis, and neither does the white blood count dropping, so he went over all the old blood tests and X-rays and decided that I have Lupus. Oh man, it was like he it me over the head with a brick and punched me in the stomach at the same time. I barely remember the rest of what he said, only that one of the first things he told me was something like “where it’s true that people can die from Lupus, that doesn’t mean it will happen to you. Many people have only the symptoms that you’ve already had and there’s no reason to think that it will get any worse.” Well, at the time all I hear was “die from Lupus”, but with time I remember more the part about it not getting worse.

So, a new course of meds. In order to get me breathing again, we started with 20 mg of prednisone with a taper, and plaquenil, which is actually an anti-malarial drug. They call it a “disease course altering drug”, and apparently they don’t know how it works. A little disconcerting, but given the alternative, I’ll take the drug.

With the prednisone I instantly was able to do everything. Suddenly I could just get up from a chair, or walk, or hold a full glass of water. I started calling myself “Super Josie” because I had all my super powers back. The super power of being able to drive my car, the super power of being able to walk up and down the stairs, to stand up. It’s still great, and every day I appreciate being able to reach over my head to put something away, or lift the water pitcher with one hand. But, I had lost a lot of muscle strength. I found I could pick up a chair, but I didn’t have the strength to lift it over my head. Bit by bit, I’ve been able to get it back.

It’s Getting Better All The Time

It is so nice to feel like me again. I want to gig, I want to practice, I want to teach, I feel creative ideas coming at me faster than I can implement them, and it’s great. I used to get frustrated when I couldn’t do everything, now I’m grateful that I can do anything.

Yesterday I rode my bike for 13.35 miles. Maybe that doesn’t sound like much, and I averaged 9.5 miles per hour, but with the snow and ice I haven’t been on my bike for about three months. That ride I went 15 miles, so pretty good for not having been out. Come to think of it, I had to walk through ice a few times, so maybe that’s what dropped my mph. And then today I went to yoga class. I went last week too, and I’m proud that I was able to get through the whole hour. I did all the poses and didn’t have to rest. Last week I did skip a few sun salutes to catch my breath, but I made it through more than I expected.

It’s so nice to be able to do these things. A year ago I could barely walk. I would say to myself, “I can sit here the rest of my life, or I can get up.” That’s how I got myself out of bed, off the john, or to the john. The choice of staying on the john for the rest of my life was so absurd I had no choice but to get up. Not to mention we have only one bathroom.

I’m a little bummed that I’m scheduled to go down a milligram of prednisone this week, so this feeling terrific is temporary. I keep telling myself that I will get back to feeling this good, but I’ll have to spend a couple weeks being stiff and sore again. Maybe it won’t be so bad since I’m in better shape now than the last time I went down a mg. The goal is to get off prednisone altogether. My goal is to get off all meds and not have lupus anymore.

I’m trying to not think about the goal though, and think about where I am now. Instead of focusing on climbing the mountain, I’m looking at all the trees.

So where was I in my little story.

The next med was an immuno suppressant, which I didn’t like the idea of AT ALL. I really didn’t want to take it, but the choice was clear. Continue to feel this awful, or maybe feel better. I knew I couldn’t keep going like I was, so now I was taking methetrexate, which is a chemotherapy drug used to treat some cancers. Just like the last drug, I felt like it was getting a little better, but at my next appointment the doc wasn’t satisfied with my progress.

One hears so much about doctors who don’t listen to your complaints, or who assume that since you’re on the right drug things are getting better, or a patient’s frustration at being misdiagnosed. I didn’t have any of that. I always thought I was getting better, but he wasn’t happy with my progress. I realize now that I probably should have been more vocal about some of my weirder symptoms, but I was so scared that he’d tell me I have something awful that I wasn’t as communicative as I could’ve been. That might sound like me making excuses for him, but I didn’t tell him about the muscle fatigue, and I mentioned the foot feeling like it was going to sleep while I walked and he didn’t really have an answer for that. I started getting episodes where my fingers would turn dead white and lose all sensation. It’s called Renaud’s Syndrome, and apparently it’s common with lupus patients. I mentioned it, he identified it, and that was the end of it. My left foot developed this sensation like it’s been shot full of novocain, the surface has no feeling but there’s feeling deeper in. I still don’t know what the hell that is. I’ve learned to live with it. I mentioned my weight loss, the assistant said “good for you!” and that was it.

About the time I started the methetrexate I started to lose my appetite. I couldn’t eat much of anything. Most times I was simply too tired to eat. Many times I would lose my appetite in the middle of dinner. We would go out to eat because I couldn’t cook and I would order food and then not eat any of it. Once all I ate as the fruit garnish. I started dropping weight. At first, I was okay with it, I’d wanted to lose those ten extra pounds you put on when you turn 40. But it just kept on coming off, and I couldn’t make myself eat. I got to the point where I was eating whatever awful junk food I wanted, just to get some calories. I lost 25 pounds altogether, I was the weight I was in eighth grade. Too bad I don’t still have those jeans.

I think I’ll always remember the day that I went to the emergency room, May 1, 2009. All week I’d been having pains when I breathed, I went to the chiropractor for the first time to get adjusted, I had massages, I had Tom try to crack my back. It felt like when you have a rib that’s gotten out of place, and cracking your back or a back rub takes care of it. It eventually got so bad that I thought maybe my lung had collapsed. Tom had that happen twenty years ago, so I knew it could happen, and at this point I didn’t know what might go wrong. That morning Tom took me to the ER, and it felt like I had broken my ribs. The pain was excruciating. He had to avoid driving over every bump in the road because it would hurt if he drove over a manhole cover. Man, that was bad, I don’t think I’ve ever experienced pain like that.

We spent seven hours in the ER. They gave me fentanyl, the drug that all those nurses have gotten busted for stealing. What a great drug! It felt like I’d had about six margaritias. They told me that I probably had a pulmonary embolism, which after watching all sorts of people on T.V’s ER die from that it really freaked me out. They took me to do a CAT scan, and it only showed a little pneumonia in my right lung. Then they decided it was probably gallstones, they did an ultrasound, confirmed the gallstones, and we started talking surgery. They wanted the expert to confirm the gallstones, but they were sure. The expert, who reads ultrasounds all day every day, saw nothing. Never mind. No gallstones. They finally decided that I had pneumonia and pleurisy, which is inflammation of the lining of the lung. They sent me home with percocets and antibiotics.

So now, on top of not being able to move, I couldn’t breathe, either. It hurt to take a breath, it hurt to lie down, it hurt to get up, it hurt to walk, to sit, to be. I had thought things couldn’t get worse!

You don't know what you've got till it's gone

I was an active, healthy 43 year old, in the prime of my life, right at that golden age where you’ve learned enough to take care of yourself, but you’re not too old to enjoy being young. Everything ws going great, I felt like I was playing at my best, I’d just bought a new violin that I loved playing. I was finally beginning to feel comfortable in my own skin and liking myself. I ate well, exercised regularly, meditated daily, was getting into yoga, doing all the right things to take care of myself. I have no risk factors for anything, my blood pressure is perfect. Then it all came crashing down. In a few short months I was reduced to shuffling around the house like an old woman. I needed help getting out of the bathtub. I couldn’t walk more than about a block, couldn’t stand longer than about five minutes without pain. I needed two hands to lift a glass of water. It’s amazing how quickly your health can just be snatched away from you. And for no reason. I didn’t do anything to bring this on. I wasn’t a health nut, but I was conscious of taking care of myself.

It all began with a stressful event that happened last July. I can trace this illness back to that week. So my advice to you is keep that stress from even entering your mind. It’s not enough to release it, don’t let it in in the first place. Don’t engage the things that stress you. If it’s your family, don’t fight back. Just don’t be a part of their shit. Let them do their thing and don’t engage. If it’s work, nothing is more important than your health, let it slide. Stress is a killer. Literally.

It began with my hands. They were sore and stiff in each knuckle. I couldn’t make a fist, and couldn’t straighten them all the way. Like most musicians, I figured it was tendinitis. When I was 20 and in music school I developed tendinitis in all the fingers of both hands, which is fairly rare, I learned. I went to a musician’s clinic, where they tested me for rheumatoid arthritis and osteoarthritis, both negative, neurological problems, which were negative, and I can’t remember what else. The verdict was tendinitis in both hands, ice, anti-inflammatories, and rest. That, as most musicians know, became the standard course of treatment. So that’s what I did. I thought it was a flare up of that old injury. I plunged my hands into ice baths, I stopped playing, I took lots of Advil. It didn’t do a thing.

Then my arms started hurting, elbows, shoulders, and the muscles in my arms ached. I thought that was from this tendinitis I had, that the muscles were sore from working more because of the joint pain. So I decided to take a week off from activity. If I went to a doctor, that’s what they’d tell me, rest. So no violin, no computer, no bike, no gardening, no aerobics, no yoga. All these things hurt my arms. After two days of this my legs started hurting. My knees were sore, and the muscles in my legs felt like I had run a marathon. Well, I thought, I guess I’ll rest that, too. Pain is the body’s signal to stop doing what you’re doing and back off, right? So I didn’t do much that week, trying to recover from these overuse injuries I had.

It took me nearly a year to recover from that. I was much worse after this “rest” than I was before. Now I was having trouble walking. My feet would fall asleep after walking a half a block, then they’d start to hurt. I was getting this weird itching/burning in my hands and feet. I had to give up doing aerobics because my feet hurt too much. I would have a pain someplace for a few days, and then it would move to another place. Like my left knee would be at like a 7 on the pain scale, and then after three or four days it would go away. Then my jaw would hurt. Sometimes I had real trouble eating because I couldn’t open my mouth wide enough to get food in. And then it would go away.

I was getting scared, and beginning to think maybe I had arthritis. The worst possible fate for a violinist. Nothing was helping. I was starting to discover that playing actually made my fingers feel a little better so I started playing again. By now I was having trouble with my wrists as well, at times I was unable to turn them enough to carry a plate on the palm of my hand. My thumbs hurt, too. It took me 20-30 minutes to warm up, but I found I could play pretty well once I did. When I say warm up, I don’t even mean play scales. I had to warm up to playing scales. I would hold the violin, and play on the string closest to the hand one finger at a time- first finger, open string, back and forth until it didn’t hurt anymore. Then I’d do the second finger, and so on. It’s hard to describe, and sometimes I got so impatient with not being able to just play something that I’d quit before I really got to play. The pain made playing not very fun, and sometimes it just wasn’t worth it.

To be continued...