Life With Sarcoidosis

For My Cousin

Posted on May 22, 2013 by Basil Rene

As a boy, my favorite cousin, Fay, was about 20 years older than me and she was fun. She had three children around my age that I played with frequently. The middle child, Stacy, was exactly like Fay in every way and we got along great despite she being a girl and five years younger than me. Stacy and I played very well together and she was funny. She had a pet monkey that was crazy like she was.

Eventually though teenage years came upon us and we went our separate paths in life. We never kept in direct contact, but always asked after each other through our parents.

When Stacy was about six (I would have been 11), she begged me to tell her a story, so I made up some elaborate story. At the end of the story she was silent and she looked at me straight in the eye, and said these words to me “You lie, you lie, you stinking bitch!”

I burst out laughing so loud because it was such a shock and her expression when she said it. I never forgot that line and often when I know someone is not telling me the truth, I say that line to myself, and I smile, remembering Stacy’s big round face with her turned down eyes telling me that line.

The last time I saw her was about thirty years ago. Stacy died this weekend. She had ovarian cancer, and even though I had not kept in touch and not seen her in all that time, it hurt like hell. I am not a man that cries easily, but her death really hit me hard.

It’s funny how in life someone comes across your path that leaves such a life long impression, and you don’t ever realize just how much until you get the news that they died. It just goes to show how when we are in the good old days, we don’t realize it and appreciate it at all.

As I write this, Stacy’s funeral is taking place 3,000 miles away, and even though I can’t be there in person, I am there in spirit.

So Stacy, even though we never kept in touch, you were always in my thoughts, my heart and my memories. You often made me smile with your line I still use to this day, and I will miss you. Be at rest my cousin, my friend. I love you.

Filed under: Sarcoidosis | Tagged: Cousins, friends, life | 2 Comments »

Flashback Monday – Damned If You Do, Damned If You Don’t

Posted on May 20, 2013 by Basil Rene

Welcome to another Flashback Monday entry. This post is fron June 2010 about my water retention.

Damned If You Do, Damned If You Don’t
Posted on June 27, 2010

My last blog entry, I wrote about the consequences of my foray into my culinary exploits, and how I was paying for it with swelling, discomfort and shortness of breath. The medical advice when having a “water retention episode” is to take your diuretics and cut back on your water consumption. Like a good little patient, I did that. I took my lasix and cut back on my water intake.
It worked. After three days my swelling went down and my breathing was eased up a good bit. The weather turning slightly cooler at night did help a bit too.

Then I got ready to shower before bed last night and as I undressed a chill went right through my body, it felt as if I was being frozen from the inside out. I turned on the shower as hot as I could tolerate it and stepped in and stayed in there for as long as the hot water lasted. The bathroom was like a steam room, but I still felt that chill, that coldness in your body that has every muscle shaking.

I dried off, dressed as fast I could and dove in bed under the covers, and I was sweating and feeling cold and hot at the same time. After about ten or fifteen minutes the chill calmed down a bit. I eventually fell asleep but it was a restless night. I woke this morning with one of the worst headaches I have had in a long time.

My wife figured it out. I was now dehydrated. I can gauge my water retention by the veins in my feet. If they are not visible, too much water. This morning they were standing out proud. Now my body was dry. I drank a tall glass of water and then my headache eventually subsided a bit. So I drank some more water and the headache lessened even more.

It’s difficult knowing when is too much and when is too little, a balance game with man made chemicals coursing through your body creating havoc and healing at the same time. When I’ll ever get it right? Maybe never. But I am just happy that I am still alive to play the water balance game. It’s one of those little hiccups in life that you go through when you have medical conditions, but in the overall picture, having those little hiccups out weighs the alternative.

Filed under: Heart Failure, Pulmonary hypertension, Sarcoidosis | Tagged: Dehydration, Headache, Heart Failure, Medicine, Sarcoidosis, Shortness of Breath, Water Retention | Leave a Comment »

Where Are You Basil?

Posted on May 15, 2013 by Basil Rene

I received a few emails from some readers expressing concern for my absence from my blog. Admittedly I have not been posting anything new, but there has been a lot going on with me. I just don’t have the time to write a blog post. I do have so many posts rolling around in my head, and many posts that I have in my “posts to write about” lists, and hopefully I will get to them. I have been posting “flashbacks” of other posts I had in the past that are still relevant today, so I hope that has been okay.

I just wanted to let everyone know that I am still around. I know from experience that blogs written by people with chronic disease can suddenly go silent and you never know what happened to the author. That’s why I post my flash backs so that you will know I am still around.

Thanks for all for checking in with me, and you can still keep up with me on my Facebook page and my twitter feed. Just click on the like or follow buttons on the right.

Best to all

Filed under: Sarcoidosis | 2 Comments »

Flashback Monday – Keeping Yourself Well Stocked With Prescription Medication

Posted on May 13, 2013 by Basil Rene

This post I wrote in June 2010, and what I write about here came in very useful after hurricane Sandy. Relieved a lot of stress. Since writing this, my monthly prescription cost if I did not have insurance would be just over $8,000.00.

Posted on June 25, 2010

Prescription medicine can cost a fortune without insurance coverage. Many of us depend on prescription drugs to keep us “well”, or even alive. I know if I didn’t have my cocktail, eventually my heart will go into fibrillation, and that’s the end of the story. Most of us get our prescriptions on a monthly basis and wait until we are down to our last few pills to refill. Many of those prescriptions are expensive, and if it weren’t for insurance, we could not afford any. I have a great insurance plan, as my monthly prescription cost is $6,600.00, and of that I pay $50.00 in co-pays.
What would happen if for some reason you lost your insurance coverage, or there was some disaster and pharmacies closed in your town for a month or more (think Katrina), what would you do if your medicine were to run out tomorrow? I know if I were to lose my insurance tomorrow, there was no way I could afford that medicine.

There is a way that you can be sure to keep your self stocked for at least a month. Firstly, if your prescription is renewed every 60 days or 90 days, ask your doctor to make it a monthly prescription. What most people don’t know is that most insurance companies allow you to refill your prescription 21 days after you filled it. That means you will have a week left when you refill. If you routinely refill your prescription on the 21st day, even though you have some meds left, in four months you will have a month’s worth of medicine extra in case of an emergency. In eight months you will have two months worth extra. I keep two to three months worth on hand, just in case. If I were to lose my job and insurance, I have 3 months worth of meds on hand to keep me going. It’s a simple solution to what could turn out to be a stressful situation in the future.

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Filed under: Sarcoidosis | Tagged: Care, COPD, Health, heart disease, Heart Failure, Insurance, Lung Disorders, Meditation, Prescription refills, Prescriptions, Sarcoidosis, Stress Relief | Leave a Comment »

Flashback Monday – Enjoying Life, Paying The Price

Posted on May 6, 2013 by Basil Rene

Another Flashback Monday entry from June 2010.

Enjoying Life, Paying The Price
Posted on June 24, 2010

Who does not love to go out to eat? It’s one of life’s little guilty pleasures, going to a restaurant, having someone else cook the food you normally would not cook for your self, and then have someone else bring that beautifully plated dish to you, serve you drinks, and then when it’s all done, you just get up and leave the mess behind for someone else to clean up. I know that I do, and I tend to eat out more often than I should. I always tell people that my favorite thing to make for dinner is reservations.

All that eating out does come at a price, and I don’t mean financially. When we have someone else cooking our food, we don’t know exactly what is going into that food, and in many people’s cases, that needs to be closely monitored. In my case it’s salt. I have to be careful of my salt intake, and I am very careful. I don’t cook with salt, I don’t add salt to my food, and I avoid any packaged food that has high sodium. As a matter of fact, I avoid packaged food on the whole.

These last three days however, I just let go, didn’t think or give a damn, and threw caution to the wind. Sunday night I had a (gulp) frozen dinner! I had a “healthy” dinner of mac and cheese. It was organic and made with rice pasta, but I never did take a look at the sodium content of that meal. Then on Monday night we went to our favorite Italian restaurant and I had, of all things, fettucine Alfredo! Oy! Then Tuesday I had an Angus Steak Burger. To many people, that may not sound too bad, and may actually sound like healthy eating. To me, it’s torture.

My case is complicated. I have Sarcoidosis of the lungs, and heart, heart failure and secondary pulmonary arterial hypertension. It’s a funky mix that makes the best specialist at Mt. Sinai hospital scratch their heads. I have five different specialist that work together to try to get me stabilized, and I am pretty stable. I am told that someone in my condition should be incapacitated. But I confuse them all because I am asymptomatic. I look to anyone that sees me, very normal. I walk at a brisk pace, albeit I can’t at an incline or at steps, but thankfully, I am able to function normally and continue to work. One of my medications is called Tracleer, and it’s for my pulmonary hypertension. The sucker cost $6.000.00 a bottle, and I get a bottle every month (thank god for a great insurance plan). One side effect of that drug, besides destroying your liver, is water retention. People with heart failure naturally retain water, and that’s why we have to limit our salt intake. Tracleer adds fuel to that fire. So I have to take Lasix to help remove the water. Recently however, they stopped me taking the lasix because it causes blood pressure to drop and my blood pressure was reading 80 over 56. Again, doctors are confused how I am able to stand with that low a blood pressure.

Combine a high salt intake, the water retention side effects of Tracleer, a “natural” tendency towards water retention due to heart failure, and you have a recipe for disaster. I woke up yesterday with my legs swollen and burning. I know my degree of water retention by the degree of the burning feeling. If it’s in the ankle, it’s okay, not too bad. Yesterday and today it is up to my thigh! It’s never been that high. That’s bad. And yesterday my breathing was labored, and still a bit today. That would be from water retention in my entire body, making it hard to breathe. Yesterday, luckily was my day off, so I stayed inside, in the air conditioning, and relaxed all day. Just doing that alone was making it hard to breathe, far less if I had to actually work.

Have I learned my lesson? I sure as hell have. The couple of minutes of pleasure, over three days, derived from a delicious meal is sure as hell out weighed by the days of discomfort and trouble breathing that I experience afterwards. The trouble with having a disease that is directly affected by certain stimuli that we love normally, is that when you “feel good”, you think that it’s okay to partake of those things at nauseum that you should be moderating, and sometimes the time between episodes is so long that you forget the effects of your troubles. I have learned my lesson, for a couple of months at least. It will be in my memory. Then again, how long does our memories really last?

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Filed under: Heart Failure, Pulmonary hypertension, Sarcoidosis | Tagged: breathing, Care, COPD, Diet, Fluid Retention, Health, heart disease, Heart Failure, Lung Disorders, Salt, Sarcoidosis, Weight loss, Wieght Management | Leave a Comment »

Flashback Monday – Realizing You Are On The Wrong Path

Posted on April 22, 2013 by Basil Rene

It’s Monday and here is a look back to one of my posts from June 2010 about my attempt at therapy

Realizing You Are On The Wrong Path

Posted on June 15, 2010

Back in April, I wrote that I was going to go see a therapist to talk over all that I had been through with my sarcoidosis and heart failure and the changes it had brought about in my life. I had always heard how therapy was so helpful for people dealing with grief, and that’s what I was going through, grief for the old me and old way of life. I am a very private person and no one but my immediate family and a very few select friends know of my condition, so the choice to go to someone and tell them all my business was a bit daunting, but I figured that the therapist is a stranger, so it didn’t matter.

I went to see a therapist that was close to my home and who took my insurance. My first appointment was pretty much me going over my medical history and my condition, so it was no big deal.

Then came the second appointment, and we started to go into my relationship with my wife. My wife has been my rock and support for our entire relationship. We work together, and spend virtually 24 hours a day together and always have something to talk about and we are constantly laughing. I am truly married to my best friend. In some strange way, the therapist was not believing this. She nodded and smiled, but then would say something like “are you sure she is happy”? Nothing like trying to put doubt in your head.

At the next appointment, she wanted to see if I had daddy or mummy issues and started to dig into my childhood. Then it was my financial situation, if it was secure or not. And then I thought what the hell am I doing here? What does any of that have to do with the fact that I had three surgeries and have been to doctors and hospitals more that I can remember in the last three years, and now have to take ten different prescription drugs to stay alive? I had some really life changing stuff happen to me, and realistically, I think that I am handling it pretty well. And now this person is trying to convince me that any “grief” I have for my old way of life is due to my mother, or father, or wife, or some obscure incident as a child that I can’t remember. I was angry, and that was not what I wanted. I just wanted some sort of guide on how to better accept my new me. I think that she saw there was really nothing for her to do, and that I really did not need therapy, so she looked for something to keep me coming back, so I quit therapy.

I just go to what I know works – meditation and relaxation exercises.
What I learned from this experience is that no one can show me how to cope with the new me. Just time, patience and acceptance of the now. The past is gone. We can only remember it fondly. Now is the time to make today enjoyable, full of love happiness and joy.

Filed under: Sarcoidosis | Tagged: Acceptance, Sarcoidosis, Therapy | 2 Comments »

Gazing Into Truth

Posted on April 19, 2013 by Basil Rene

I look at the white framed image of the man in front of me, his face revealing nothing of what really lies with in his soul, except his eyes. The eyes tell it all, their perfect brown circles staring out, trying to express neutrality, but can’t. They express the true meaning of the man, his inner core, his deep and true self.

And as I sit in front of this image and look deeply, really deeply into his eyes, I see the truth that lies with in that soul, and I see a truth that is so very cleverly hidden, or at least, trying to be hidden, but still unable to really disguise itself. A truth that even that man himself is trying to deny, projecting another truth for the world to see.

And as I look away from the image of those eyes, trying their hardest to conceal a feeling that the man wants to hide, I look down at the same time to see the cold steel do its damage, penetrating into the channel, working its way deep within to pull forth the precious fluid. I look, almost hypnotized as the fluid leaves the channel, flowing into the plastic tubing and filling the vials that bare my name in deep, bold sharpie marker.

I feel as the rubber band tied around my arm is loosened, and I release my clenched fist as if by habit to allow the blood to flow more freely, so that the seven vials can be filled with my precious blood quickly, so I could leave.

I look back into the mirror at the image of my self and see my truth. I look into my eyes, eyes that try so very hard to hide the truth that I am tired of this. Really tired of this. I look at my face, and I know that I wish it was all gone away, the nurses, the doctors, the tests, the operations, everything.

And I blink, and I know that it has not. That it will not. This is my truth now. This is my life. And so I wait as the seventh vial is filled and I look at myself and silently tell the image staring back at me that it’s okay. This is what it is now, and we are fine. We are alive, and I take a deep breath and let it go slowly from my chest, and I know that all I can do is make the best of it. Regretting it, hating it and wishing otherwise is human nature, and if I never visit those places on occasion, I will never appreciate that despite all that I have to face on this new journey, I am able to still do so much, albeit not as much as I could before. And that’s okay. It really is.

I watch as the needle is removed and I press the gauze tightly against my skin and wait for what platelets I have to do their job and clot the wound. As a bandage is applied to my arm I smile and thank the nurse and once more glance at the image of that man that so desperately wishes he were not here and I tell him it’s okay. We’ll get through this all with love, humor, positivity, and in the faith than we can. And I see his eyes brighten and a smile enters those pools of brown life, and he winks at me and I too know that it’s all going to be okay.

Filed under: Sarcoidosis | Tagged: Heart Failure, Pulmonary Hypertension, Sarcoidosis | Leave a Comment »

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