Re-learning to breathe

It has been a little over three months since doctors diagnosed my sarcoidosis flare up. I should not be impatient with progress. My docs say it will take six months to a year to get symptoms under control.

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.

Welcome, reader!

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.

So welcome.

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…?

Not-so Great Adventure

Today was a low-energy day. I was invited to go to Six Flags Great America amusement park (like Six Flags in Jackson, N.J!) and was excited about the prospect. But ultimately I declined the invitation. Because of the medications I take to fight sarcoidosis, I get tired as the day wears on.

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.

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Home is where the heart - and healing? - is

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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 11 p.m.

Then she called about midnight 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 New Jersey would be a good idea. Get some rest, she said. Let your family love, support you and draw strength from them, she said.

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 Chicago – and I must stress that they are awesome. But can anything beat the home cooking that nourished you or the look of love and admiration from someone who’s know you for years (for forever)?

Home….hmmmm…

Fifteen quality years and shooting for more

Friday and Saturday were good days. Friday, I took a mile-long walk, pushed myself by walking quickly and deliberately. I was breathing normally while walking and quickly recovered at the end. Best breathing day since being diagnosed with sacrcodosis. That was a great feeling for me since I haven’t had a day like that in quite a while – a year, perhaps – AND Friday was very humid. I always thought I was gonna have a hard time in humid weather, but things are not as bad as I thought it would be. Saturday was great, too. Hung out with friends, played Bean Toss. A slyly addictive game. Walking and playing outside. And I was able to breathe OK - there's room for improvement. I'll get there- and all without my heart collapsing. This takes me back to that electro-cardiologist “15 years” comment: “Let’s say you have 15 years…” To live. Those words still gnaw at the base of my skull. No matter what I am doing, I am aware that sarcoidosis can (will?) ultimately kill me and it has cut my life expectancy. I could make it only to 58, according to the doctor. Could….could… I could live a long, rich life, one that allows me to accomplish and contribute into my 80s or 90s. I get to accomplish some important life goals, becoming a successful creative writer and filmmaker, establishing family, marinating a healthy balanced living that benefits mind, body, soul and earth. Leaving something behind to benefit humanity. I could just hit the wall in 15 years or before. Vital organ functions stabilize for a while, but only with medication. Soon, the body just becomes tired. I go…at 58, possibly before. I could just get hit by a car while trying to cross Ashland Avenue to go to the Jewel-Osco supermarket. All I can do is live my life. Get healthy, maintain healthy habits and let fate, luck and God take care of everything else. One should just live life as fully as one can knowing that not one moment is promised to us.

Getting out from under the blankets

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My birthday is on July 27. My goal is simple: To feel better on that day then than I do right now. I have been in a funk for almost three weeks and I finally think I am coming through it. The funk can largely be attributed, I believe, to the pharmaceuticals I am taking to fight sarcoidosis. I take prednisone and mexthotrexate to control and reduce the scarring of my lungs and heart and to reduce the size of the lymph nodes in my lungs so more oxygen gets to my lungs and, ultimately, my heart. I am also on lisinopril and hydralazine, counteracting prednisone's affect on my blood pressure. Prednisone, besides making me moody and irritable has made my blood pressure soar. I have hypertension anyway and I was taking carvedilol to control it. Ten to 25 milligrams of carvedilol, a little exercise, watch the diet and things were fine. Not anymore. It now takes 100 milligrams of carvedilol, 40 milligrams of lisnopril and 50 milligrams of hydralazine to keep it in check. BARELY in check. And the drugs make my tired. It's tough to do routine things. Tough to just go for a walk. So I spiraled into a funk, doing the most elemental things possible, gotta eat, gotta shower, gotta take care of business. And then I would retire to bed, pulling the blankets over my head. And sarcoidosis is a double-bitch because besides taking the body, doctors say it also plays with your emotions. I actually cried after watching 50 First Dates, an Adam Sander comedy! Someone please shoot me! I try to keep my spirits up because I have these mini-goals for the next six weeks. Sometimes I do feel much better than how I felt back in March when I was hospitalized because I was gasping for breath and coughing up blood. Those days seem like a distant memory. I'm able to shower and clean my apartment without huffing and puffing like I'm playing one-on-one against Kobe Bryant. Friends in Chicago help me keep up my spirits - I thank them and I hope I do the same for them - and my family back East is carefully monitoring my progress from afar. I owe them another business. So, striding to achieve goals - improved health, oh!...finishing the first draft of my first novel! - I am getting out from under the blanket. I'll start with a walk. Who knows? Maybe I'll develop my lung capacity enough to one day chase behind Kobe as he blows past me and dunks. I'd be cool with that. What do you do to overcome the blues?

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Guilty pleasure...gotta watch it

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OK, I just ate some frozen Tyson fried chicken....yummm.... I could not help myself today. My will power was weak to say the least. Earlier in the day, I had a bowl of cereal and milk so I could take my meds and then nothing the rest of the day. No appetite, too busy. So about 9 p.m. this evening, just a few minutes ago, I was jonsing for food...fatty, salty food, which one should avoid when taking prednisone. But I was like a heat-seeking missile all the way to Jewel-Osco, the frozen foods section and...the delicious Tyson product I'm working over now. Can't to this everyday. My weight loss would become weight gain with a quickness. Can't have that. The rest of the day, starting when I get up, salads, lean protein, fruits and whole grains. I promise. I need to.

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Methotrexate haze

Tuesdays were like any work week day. I hate them. Not close enough to Friday. But over the past few months, I've really come to despise Tuesdays because that's the day I take mexthotrexate, a chemo drug given to me to stem the aggressive swelling of the lymph nodes in my lungs, which had grown to the point that they were blocking oxygen to my lungs and ultimately my heart. Which could have caused a fatal heart attack. Needless to say that is not good.

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Sarcoidosis sucks. Anyway, I will take the drug and it's side affects - I am experiencing are acne; chills and fever; dizziness; general body discomfort; hair loss (Not a really a biggie for me. See bio pic!) itching; loss of appetite; lowered resistance to infection; nausea; sensitivity to sunlight; sore throat; stomach pain; unusual tiredness. I'm thankful that I don't experience the vomiting. I do wish I was experiencing the loss of appetite. Prednisone is still making me eat everything. I'm tired from all the meds, too, so walking of late has been a struggle. But I'm still going for it. I remain upbeat as possible by remembering I do not have the worst methotrexate side effects, including red, swollen, or blistered skin; seizures; serious infection (herpes, hepatitis, blood infection); trouble breathing; unusual bleeding or bruising; unusual pain and discoloration of the skin; vision changes; vomit that looks like coffee grounds; yellowing of skin or eyes. Tuesdays are tough because the other drugs I am taking to combat prednisone's stimulant side effects make me very sleepy. Tuesdays are almost a wash. Better to stay in bed out of the way so one doesn't have to deal with zig-zagging through speedy traffic along Lake Shore Drive (my favorite road in Chicago. Seriously). But life doesn't allow for many time outs, so I will rise early to eat breakfast, take my meds, do my two-mile walk and get through the rest of the day. Thank God I am tolerating these drugs as well as I am, but I have to admit that they are starting to get to me. And I could be on this regiment for the next six months to a year. Is there anyone out there who has good coping methods when it comes to dealing with any of these medications? I'd sure like to hear from you.

Too many drugs; too many side effects

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.

Avoiding the smokes, eating the good grub

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.