So you had a bad day(s)

I'm sort of on a roller coaster ride the last few days. I receive a treatment called IVIG, among others. IVIG, or Intravenous Immuno-Globulin therapy, is intended to boost my immune system. My system has been very slow to develop. I was hospitalized 7 times in 2014, twice between October and the end of the year.

People respond differently to the treatment in the days after receiving it. The hospital presents me with the "Things To Look Out For" list, which includes nausea, vomiting, fatigue, pain. In my case, I've rarely experienced the nausea and vomiting, but the fatigue and pain slam me like a freight train. I have neuropathy in my legs and feet, particularly in the lower legs and feet. Neuropathy is so strange because everything from my shins down is completely numb to the touch, but they hurt like hell. When I was younger, I was playing football on the beach with some friends. Someone had dumped their barbecue grill without burying the hot coals, and without seeing them, I ran right through the coals. Well I jumped about 9000 feet into the air and screeched like an injured cat, but the damage only amounted to a bunch of second degree burns.

That's exactly the sensation I'm experiencing these days. I've often heard neuropathy described as "tingling". I'd pay cash to trade "tingling" for "fire-walking". It hurts, and it makes me very grouchy. I know that I'm difficult to live with, but I can't get anyone to shoot me. (I'd bet they would like to). 

The medication I've been prescribed can handle the pain, but then I'm useless. More so than usual. There's an extra room in the house where I've placed a bed, and that's where I go and try to hide so no one has to deal with me. I'm not actively nasty, as in I don't hunt for people to bother. But I can't spend the rest of my life doped up and gathering mold. I'm trying to find a happy medium. The right amount of pain medicine that doesn't leave me drooling and babbling.

So it's a trade off. I spend a few days in utter misery because the IVIG is producing measurable results. My "good" numbers are climbing. I get the treatment monthly now, so perhaps the numbers will get to the point where I can increase the time between infusions. That way, the family will be better able to deal with me and not take me up on the order to shoot my head off, ya know?

I eat like 3 people because of some other medications I'm taking. We'll get to that topic in my next issue. In the meantime, if anyone has any ideas or suggestions, please use the comments section, it Tweet me... @LippyJimmy

Never Say Never

On nights like this, I find myself lying awake just thinking. The past two years have given me so much to dwell upon. 

Mostly, my mind churns up financial issues, a sure-fire way to ensure anxiety and insomnia. Most of those nights, I simply deduce that no matter what I do, I will never have enough money to get ahead. Every day, I open the mail, and with it comes yet another medical bill. The bills are always at least $100, (and that's on a good day), and more often than not, they number in the thousands. I've got pretty decent health insurance, but it doesn't cover everything. The best one yet was a whopper from Hackensack University Hospital for just over $56,000. I called the billing department, sort of laughing about it, to see if there was some sort of error. There was not. 

I'm never going to be able to pay a bill that large, but if I default on that, the hospital can opt to refuse any further treatment. At least that's what I've been told. 

I don't squander the money I do have. When I budget my money, my first priority is putting food on the table. Then utilities, then I divvy up the balance to try and pay down the Mount Everest sized medical bill pile. 

I try and give my kids what I can. My oldest grew up in the period where I was making a great living. My youngest has been growing up during this era of pinching every penny. We live in an area where most people are making a great living, so my youngest is aware of what others her age have. I know it's hard for her. She's a teenager, a group that isn't always capable of rational thought, but she's been very grateful for what we do give her. I'm kind of proud of her ability to be grateful for what she does get from us. She's not aware of precisely dire things are for us, how every month we teeter on the edge of the cliff. 

So why did I title this post "Never Say Never"? I did so because the world, for us, is full of kind, generous people who've been very supportive of us. My youngest turned 16 in March. Most of her classmates are hosting extravagant "Sweet 16" parties. From January through March, I sweated and struggled with the idea that we were never going to be able to throw such a party for her. Not a good feeling for a Dad. I know there are more important things to worry about and deal with, but in the world of a 16 year old, it's damn near tragic to be denied a rite of passage like that. 

Here's where the "Never Say Never" part comes in. A very, very kind soul, who knew of our situation, remembered the days when we were first in line to write a check to help others. They helped put together a magnificent soirée at a country club where she worked. I openly wept when I was informed that the only cost to us would be a dress for my daughter to wear. The rest was given to us, free of charge. I couldn't believe that there were people out there who would do such a thing. 

My daughter soaked up every moment. She was the Princess of the evening, and loved every moment. People probably think I'm a huge crybaby. It seemed that at every other minute, I was wiping tears from my eyes. 

Not to be morbid, but there's no guarantee that I'm going to live long enough to walk my girls down the aisle. Cancer is evil that way. No guarantee that there will be a father-daughter dance at their weddings. I danced such a dance with her that evening. I didn't even bother to wipe the tears away. I just let them flow. They were tears of pure joy and love for my girl. 

Never say never. Love and kindness always find their way in. 

Alyssa Milano's Kindness

Please consider giving what you can to @lippyjimmy. This guy is special. http://t.co/msxv3dCeNU

— Alyssa Milano (@Alyssa_Milano) April 3, 2015

One of the nicest things ever done for me...

♥.@lippyjimmy is the general of my Twitter army. He has always supported us. Now it's our turn. Check out: http://t.co/msxv3dCeNU
— Alyssa Milano (@Alyssa_Milano) April 2, 2015