Thursday, June 25, 2009
Last night was especially frustrating in terms of breathing. Today, too.
The humidity. Need I say more? Most of us hate humidity, but I remember the days – not that long ago – when I could work out outside during the summer months... developing a good lather.
When I was younger, I cleaned carpets during summers, using a high-compression system that delivered steam. A huge tank of water and cleaning solution was mounted in the back of a van and we'd drive from house to business to home blasting away dirt. And that truck, the engine of which was rigged to keep the water hot, had no AC.
One summer during my college days, I was a day laborer on a construction site. I worked under the high, hot sun needing nothing but water and pieces of fruit to get through the grueling work. Ditch digging. One of the best jobs ever, to be honest. Just dig what they need and no fuss.
Back then it was, Volleyball, anyone? Football? Let’s go. Full-court basketball? Let’s go. For hours and hours.
Today, walking and from the market can be a chore. This surprises me because I was breathing pretty well over the weekend and it was humid then.
My sarcoidosis flare up started last summer, with a sometimes uncontrollable cough, breathlessness, a little bit of bloody sputum (that should not have scared me, right?), fatigue. I wonder how long problems were percolating before they forced me into the hospital in March.
I felt like I was dying in March. I do not feel that way now. However, my breathing is still far from baseline. To keep the lung capacity I have and to improve it, I am employing proper breathing techniques – deep, measured breaths, inhaling and exhaling with the diaphragm.
Essentially, I am trying to reacquaint myself with breathing techniques I employed when I studied martial arts, or the techniques a good coach teaches to basketball players, swimmers, tennis players, etc.
It seems to be working. I have a pulmonology function test soon so I will see what the tests reveal. I'm excited about being weighed again. I feel that I am finally under 300 pounds - prednisone be damned! That would be a nice discovery.
Only 50 or so pounds to go...
For more about improving breathing affected by chronic disease, specifically sarcoidosis, click here.
Does anyone have techniques or tips they want to share? Meanwhile, I'm going to take a walk and practice my techniques.
Tuesday, June 23, 2009
I wasn’t planning to write today but I noticed that I have a follower. An actual blog follower!
Can’t keep an audience – even an audience of one – waiting.
Truth be told, I never thought I would write a blog. It has been a challenge. First, I am used to reporting, writing or editing stories written from the third-person perspective. For 20 years, I have been a cool-headed, detached observer with no dogs in the fight.
Now, I’m trying to get across my POV. It's a daunting task. I’m not the sort of person who would stand with a megaphone at the edge of a cliff and yell about my disease. That’s what I feel like doing.
Having an audience – even an audience of one – scares me. I want to make sure my readers get something valuable from this. So, in the coming weeks, I’ll be doing some original reporting on sarcoidosis. They’ll be posted here and will be sharable.
I’m also mulling the potential expiration date of this blog. My goal right now is simple: Blog through this transition from sickness to wellness – that guarantees six months to a year’s worth of blogging.
After that, is the blog useful? Does it expire or evolve into something else? The answer to that will be revealed sometime in the future. And readers will have a hand in that, I am sure.
So, there it is, my friend. And welcome.
Now, how do I get more folks to read this blog…?
Monday, June 22, 2009
Today was a low-energy day. I was invited to go to Six Flags Great America amusement park (like Six Flags in
Who wants to be the one taking a break when the rest of the crew is pushing forward to the water slides? Not me.
Today was a not-so Great Adventure.
I wonder if I can be more quickly weaned off of all these drugs. All of them list drowsiness as a main side effect. Then there is methotrexate, which I take every Tuesday. I feel dizzy and unsteady on these drugs, but I fight through the feeling. Tuesdays are tougher. It feel even dizzier after taking methotrexate. No fun.
I won’t stop taking the drugs until I talk with my doc. Earlier this month, I skipped a prednisone dose. That was a mistake. I won’t make the same mistake again. Also, it would be stupid to stop taking the blood pressure medications since prednisone is also causing my pressure to soar.
But I do want off these drugs so I can live a more normal life (does anyone take natural remedies sans side effects to combat sarcoidosis? I would love to hear from you).
Prednisone and methotrexate both suppress the immune system. It is probably a good idea not be around large crowds, especially loud crowds of children who pass infections the way the L.A. Lakers effortlessly pass a basketball.
…Still…it would have had more fun riding a roller coaster at a theme park than hitting the sheets early.
Rolan and I talk every night. We check in and check up on each other, learning about what happened during the day. Dishing. Commiserating. Supporting each other and enjoying each other as best as two people can when they are separated by 861 miles.
She is worried about me. I was wheezing during our conversation on Sunday night (things seem better today). We talked, said goodnight about
Then she called about because she could not sleep.
“I am worried about you. I do not want to lose anyone else and I do not want to lose you.”
This has been a tough year. Her uncle died of complications of lung cancer. Her grandmother is in the hospital after breaking her hip. In between, sarcoidosis rears its ugly head and lays me out for days. I’m recovering, but it is slow going.
Rolan wants me to come home. My mom wants me to come home (823 miles separate us). All my peeps in the East who know about my fight with sarcoidosis want me back.
Rolan, my mom, they are both right. One of my doctors even recommended that taking off the summer and going home to
If Rolan or my mom were sick and needed me, I would pack up and go back home to support them. No thought involved. Things are tough, but jobs can be replaced. Once a person goes, they are gone for good.
No doubt, you have read about my good friends here in
Sunday, June 21, 2009
Thursday, June 18, 2009
Tuesday, June 16, 2009
Thursday, June 4, 2009
If someone had told me that one day I would be downing a handful of pharmaceuticals to combat a debilitating disease, I would not have believed it. I am still getting used to the routine – and the side effects. Especially irritability, constant hunger and slight shakes. That’s partially why the pics I’ve shot are so…bad.
So, here’s what I take:
Prednisone, 50 milligram daily; methotrexate, 10 milligrams once a week (Tuesdays)
These drugs are just toxic. Prednisone is a steroid and methotrexate is a chemo drug, given to cancer patients to fight aggressive malignant tumors. Both are being used to stem the onslaught of granulomas trying to wreck my heart and lungs.
And they make me feel like shit. The prednisone side effects I am experiencing include fatigue, weakness, occasional hip pain, acne, sleeplessness, weight gain, the dreaded moonface (yes, I'm vain, dammit. I do not like the way I look right now. It was bad enough when I just felt like shit. Now...), nervousness, increase in appetite and – sometimes - hyperactivity.
Methotrexate? Dizziness; headache; stomach upset; tiredness. Hey, at least I am not vomiting up a substance that looks like coffee grinds. That is a listed side effect, too.
Doctors treat the symptomatically, since it is not always feasible to stop prednisone or methotrexate administration. Science has determined that the benefits of the life-saving drugs outweigh the side effects. So, since my side effects are considered mild, I deal.
But wait, there is more.
Adavair 250/50 twice daily; Combivent daily and Fluticasone Propionate, once daily. All snorted to help with breathing and allergies
Carvedilol 50 mgs twice daily; hydralazine 50 mgs three times daily; and lisinopril 40 mg once a day. For high blood pressure. I have hypertension, but it was under control with only 25 mgs of Carvedilol before I started talking Prednisone! .That's why I am taking so much more of the Coreg knockoff.
Folic acid 10 mg daily…to safeguard healthy cells against the ravages of methotrexate.
There’s more the docs want me to take, but I think this is enough right now. The drugs are working well, but they are making me feel ragged. I don’t want to deal with any more. Not right now anyway.
Wednesday, June 3, 2009
Why is it the better I feel the more I want to smoke?
I have been dying for a cigarette for days. It must just be the stress of dealing with this sarcoidosis diagnosis, plus other things I'll get into down the road.
Anyway, I have been dealing with the smoke craving through exercising and creative writing. Hard to smoke when you're power walking two miles a day. Not that goofy-stride walk one sees so many doing, but trudging through mud and sand and up hills to maximize the workout. Hell of a lung workout even for the healthy. And I am not 100 percent. I can feel that. But it feels good to breathe heavy and break a sweat.
I feel alive. And fortunate. Every time I go to get checked out at Northwestern Medical Center, I get low because of my condition and circumstances. But then I run into someone who is in a wheelchair and sucking on oxygen, or someone who weighs 100 pounds more than me and is, desperately trying to lose weight.
I thank God that my condition is what it is. I can bear it and get better. I see the light at the end of the tunnel.
Besides smoking, the next hardest thing to do is control my desire for food. Prednisone has made me ravenous, 24-7. And I want the worst foods possibly: Salty, fatty and sugary foods. And I wanted them all the time, which is why I went from 290 to 321. But I am finally under control, I think and should be just under 300 on Friday! I will weigh myself and let you know.
Passed a major food test last night. My friends piled into a car and went to Popeye's Fried Chicken. Came back with boxes of fried chicken, fries, big-assed colas. I stayed home and made stir-fry chicken and broccoli, light on the oil. No salt. A dab of oil and pepper, garlic power and Mrs. Dash for flavor. The meal was delicious and satisfying. And will not add to the stomach, ass and thigh fat I am trying to lose.
I am good during the week now, diet-wise. I will reward myself with something fatty this weekend, but I'll be mindful of the calories. But I will be eating someone's fried chicken or a Chicago-style hot dog. Tasty and even decedent is part of living, too.