Thank You for Saving My Son

In three months my disabled son will turn 18.

For almost 4 years I have struggled as a single mother with my own disabilities to raise three children completely alone. Two of those have special needs.

In three months my disabled son will turn 18.

He stood to lose his medical insurance at that time.

His medical bills have topped 1 million dollars a year in the past. His prescriptions, including insulin but not including diabetic supplies, are over $2k a month. This only includes the ones his insurance covers.

I've spent almost 4 years trying to figure out how to keep the power on and how to keep us in our home. I resorted to loans over the last 10 months that put me in debt for the first time in my life.

I live in a state that does not have resources to help provide the care that my children need. The eldest will qualify only for 4 hours a day, 5 days a week assistance in many areas he needs help with. Even then, it's debatable if he'll get qualified.

He stood to lose his medical insurance.

He has more doctors and specialists then I can count without resorting to a pre-made list.

His medical records would fill any file cabinet you have in your home.

He stood to lose his medical insurance.

Pause a minute. Look at your child. Imagine the impending doom that comes with the knowledge that, without medical care and medicine, your child will die. Imagine the fear that comes with the ticking clock, counting down each day, knowing that soon that may be the situation you are in.

Imagine the options that you consider in those situations. The sacrifice you and your child would need to make just to ensure medical care. The rift that would be created. The emotional damage that would be done with having to choose to place your child elsewhere.....your firstborn....just to ensure his survival.

I can not begin to put into words the agony I have been through. The tears, the fears, the stress of having to put on a brave front for the world while realizing you stood to lose that which you hold most dear. Never being able to speak your fears, simply because they were to horrendous to voice.

Yesterday, our three year journey of trying to ensure he would keep his insurance ended.

Yesterday, our three year journey of attempting to get our government to recognize him as disabled was a success.

Three months shy of his impending doom, we prevailed.

Under the stress of the last three months, I broke. I came to the point where my fears overcame me and I felt I could not take another step. I contacted my college instructors and told them that I had to drop out, despite my being only half a semester in three classes away from graduation. I had weeks left to graduate, a straight A average, yet couldn't take another step.

In despair I drew away from most everyone I knew. I snapped quickly and found myself on an emotional roller coaster that made me feel insane.

I lost motivation to do most everything and each day merely went through the motions.

I stood to lose my child. My choice was either death through lack of medical care....or placing him with someone else. I would have opted for the latter, and lost my heart in the process.

If you had asked me at 15 where my life would be at 38, I would have told you I'd be happily married with a slew of children running around.

Things don't always turn out the way you plan.

My instructors ganged up on me. They pushed me to finish, knowing I was so close. They encouraged me, extended deadlines, and opened up opportunities to maintain my grades. I honestly feel like they carried me when I could no longer take another step. They are true champions and heroes. God knows community college instructors don't get paid enough to become someone's personal coach. Yet, they did. The entire rest of my life I will remember what they did for me.

My friends stood up and let me vent, sometimes for hours. They endured my ramblings about things that didn't matter as I strived to keep my mind off the things that did.

My boyfriend looked at me often in confusion, but bit his tongue and stayed a means of support even as I shoved him away due to his lack of understanding my turmoil. He couldn't relate. His life has never seen hardship such as that I have endured. His compassion endured.

My children, frightened by my fluctuating emotions and their lack of understanding (because you can't tell your children your fears), rallied around me. They expressed their love even when I must have seemed unlovable. They increased their efforts to behave and help out around the house. They pushed themselves extra when I couldn't take another step.

There are many evils in this world. I've seen them, tasted them, felt them. Life can be cruel.

Often, there seems to be no hope and you breath the darkness in with a suffocating thickness.

Yet, somehow, even when you've lost sight of it, there is always a light at the end of the tunnel.

My son will have medical coverage. His future is assured.

There will be those that will read this and be infuriated that their taxes are paying for my son to stay alive. They will argue that Social Security and Medicaid is merely a drain on a system already bogged in debt.

Yet, each day my son will awake with breath in his lungs due to that system.

Each year I will bust my ass to give back to a system that is keeping my child alive.

I see our system's flaws in each child that dies of hunger. I see our system's flaws in the elderly that freeze to death in the winter. I see our system's flaws in the mentally ill that die, abandoned and alone in alley ways. I see our system's flaws in the domestic violence victims that are killed by their abusers. I see our system's flaws in the faces of those traded for sex, or sold into other types of bondage and slavery. I see our system's flaws in the hard working two parent homes that still can't afford insurance. I see our system's flaws in the mother that feels ashamed when her child's meals are paid for by the government.

Yet, yesterday, our system prevailed. Yesterday, the system so many complained about SAVED MY SON'S LIFE.

And I am eternally grateful. I am eternally relieved.

You see, when the system you live in stands up and assists you to survive, you learn a sense of gratitude that will live within you every single day of your life.

You learn to give back in ways that create a better system, a more humane system, a system that works.

I am beyond blessed. My child has an opportunity to live at home, with his mother and siblings that would walk through hell and battle Satan himself for him. My child will not have to worry about running out of insulin. My child will not have to worry that he can't get the care he needs.

I am beyond thankful that I was born in this country.

I am beyond thankful that my child will live because he was born in this country.

I am beyond thankful for those that are in positions to work and do so. I am beyond thankful that their hard work is keeping my child alive.

I am even thankful to those that would scorn him this benefit and complain of their hard earned taxes going to pay for my child's life.

Thank you. Thank you to the instructors that go out of their way to ensure someone is successful. Thank you to the people that show compassion and give support even when they don't fully, or even at all, understand. Thank you to the attorneys and judges that spend their days pouring over medical files they do not understand nor comprehend, yet research so that they can. Thank you to the able bodied that work. Thank you to those that show charity and give to others. Thank you to the fathers that actually take interest in their children and aide in their support. Thank you to the mothers that do the same. Thank you to the parents that share their struggles so that others know they are not alone. Thank you .... thank you .... THANK YOU.

Because, I could have never done this alone.

My family would have never prevailed alone.

I am indebted to each of you.

Cymbalta Beware

For those of you who have spoke to me in the last week or so, you may have noticed that somethings not quite right. Well, it's not. 

Several months ago, I was fortunate enough to temporarily have two health insurances. I saw a new rheumotologist and was prescribed several medications, one of which is Cymbalta. Cymbalta is regularly prescribed to help treat the pain associated with Fibromyalgia as well as nerve pain in those with diabetes. The effects of the Cymbalta, along with the other new meds I started, were quickly noticable. There were a lot of negative side effects the first month, but they eventually tapered off. My pain decreased and my mobility increased, both big pluses. After so long in such intense pain, it was a nice change. I noticed that emotionally I seemed to be shut off, but the relief was worth it to me at that point in time. 

My circumstances changed and I no longer had two insurance policies to cover my prescriptions. I had to stop my meds since we could not afford to refill them. The first to go was a medication that was created to lower blood pressure. It was prescribed to me for my Reynaud's Phenomena and worked fabulously! My hands and feet improved almost immediately! I noticed the changes when I quit taking the med after only two days. I was saddened to have the pain, tingling, stinging and other sensations return to my hands and feet. 

The next med to go was the Cymbalta. I begin to taper myself off of it since I figured anything that messes with brain chemicals probably shouldn't be stopped cold turkey. Yet, no matter how I tried to gradually wean myself, it seemed it wasn't gradual enough. I only had a limited supply of meds so I had to wean or would be faced with quitting cold turkey. 

Weaning myself off Cymbalta has been worse then when I got clean as a teenager from illegal drugs and alcohol. It's been worse then nicotine and caffeine withdrawl. I almost feel at times that I'm dying. The thing is, it's not really a physical problem that's driving me crazy. Sure, the pain has increased quickly and tremendously. Some days I know my pain is worse then when I started taking the Cymbalta! But, it's the other "stuff" going on that is making everything so unbearable. Below is a list of what I'm experiencing: 

Nasuea

Extreme food swings: Feeling of starving one minute and repulsed by food the next

Intense dreams 

Waking and having no idea where I am

Complete disconnect at times that makes me think maybe I'm really in the hospital in a coma or highly         medicated for some reason

Disorientation....it's hard to explain but it's almost like suddenly, my brain is shot full of electrical impulses and goes instantly dead. It then resets and I can continue on. 

Dizziness

Inability to walk or balance self

Intense "fluttering" in ears. Feels like something is inside my ears and vibrating/fluttering rapidly and forcefully. 

Twitches in body, face, eyes, mouth, even my tongue twitches. 

Inability to spell, type, write, etc (this is taking me at least 25 times longer then normal)

Extreme emotions and feelings of hopelessness, helplessness, rage, confusin, fear, sadness, etc

Extreme agitation and restlessness.....I feel like I HAVE to do something but when I get up to do something it seems that nothing will work! 

Memories of past events with full and complete recollection. When it happens, the entire event is clear to me....smells, breezes, colors, everything as if I'm in that moment. (If a drug that did just that could be invented there would be one huge market for it)

Lack of concept of time

Complete memory loss of some events happening during the day

Losing composure (crying that completely comes out of nowhere and won't stop....also laughing, rage, and other emotions that seem to come out of nowhere and completely dominate me)

Tremors, loss of muscle strength

Bowel issues (no detail required)

Flucating temperatures.....freezing to burning up to freezing again. 

Sense of.....well, I'm not sure how to put it. It's like I'm consciously aware in the back of my mind somewhere that I'm conscious, but everything seems so surreal that it doesn't seem possible.

I could go on and on but another one of the issues I'm having is I forget what I wrote as soon as I wrote it. So, I have to keep scrolling back up to see what I wrote. I also lose the thoughts before I can put them down. 

Tonight I decide to do some research cause quite frankly, I was getting downright scared! Come to find out, many many many people are complaining about similar withdrawl issues! They even have nicknames for some of the issues, like "Brain Zap". Realizing that these type of withdrawl symptoms are typical is quite a wake up to me. Sure, temporarily I didn't mind the lack of emotional disconnect if it meant a decrease in the extreme pain I'd been experiencing. The pain had lasted so long and been so intense I had to have some kind of relief. However, if this medication routinely and typically causes these types of withdrawl symptoms.........what exactly did this stuff do to me when I was on it?? What long term side effect will there be?? How long will I have to go through this withdrawl? 

I want to let all my fellow Fibromites know.................if you to are taking this med.............please don't stop it immediately! I can't imagine how horrible it must be to stop cold turkey. I thought the initial side effects were bad, but had I known this was what I would face now, I'd have never taken this stuff!

I know that without medications I'm headed down a nasty road. However, I'm happy to be off Cymbalta no matter what relief it gave me. I'll take the nasty road that I must travel ............. but it's gonna be with my own emotions, my own thoughts, my own brain..........not this jumbled, twisted, electrically zapped brain these withdrawl symptoms has put me through.