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.
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Disease will not define me. How I handle it will define me. I will fight it and win. Defeat is not option.
I am a man, a journalist, an instructor and coach. I am also a fighter trying to kick the ass of sarcoidosis, which affects my heart and lungs. My weapons are my words and my body. I research, contemplate and write. I'm writing about my plan to get the disease under control. I can see the goal and I want to achieve it. It may take a while, but I will win the fight. I will keep on top of this until it is controllled.
I am not alone. I have a great family, great friends and feel a kinship to millions of people in the U.S. and across the globe battling sarcoidosis and other autoimmune diseases. Some exhibit no hint of the distress and damage the diseases can cause. Others cannot walk up steps or perform basic chores.
Because of them, I say I am lucky and blessed. I will put a face on it because I can and others cannot. I can move and will keep on doing what I do until I cannot do it any more.
I also look forward to learning how people with sarc and other diseases cope and overcome.
We'll also have a little fun along the way.
I look forward to making your acquaintance.
Sarcoidosis is an autoimmune disease and the cause is unknown. It gets the body's defenses to attack vital organs, including lungs, kidneys, heart, etc. The attacks cause scarring and the scar tissue clumps together. As scar tissue grows there is less working vital organ available. The disease can be fatal, however, 30 to 70 percent of cases don't need medical treatment and the disease is considered chronic, managed with medicine, diet, supplements and lifestyle changes. Sarcoidosis in not contagious.
For all the technical stuff, click here. The site is thorough.
I am a good reporter, editor, writing and reporting coach and teacher.
But writing and THEN editing my own words? That doesn't work so well. Every writer needs an editor, a second set of eyes in the head of someone who is detached from the original copy.
So, I'd appreciate it if you email me if you spot typos misspellings, grammatical errors, etc. I'll fix the problem ASAP. Thanks!
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ReplyDeleteDid you make this website yourself or did you hire someone
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