The struggles with being chronically ill

Everyone with a chronic, ongoing illness gets to the point where they wonder if it is time to draw the line.

This has nothing to do with wanting to die–I think most of us prefer to experience the rare joy that life brings–it’s that suicide for the chronically ill has as much to do with guilt over the hardships our illness places on others as much as it has to do with our suffering itself.

We really have to have a strong support system to stay alive with a chronic illness. Not only is it expensive to have a chronic illness in the U.S. (and we are unable to work), but it also requires a small army of people to help us stay alive in order to make it through the day.

Over time, sometimes we lose that help…for one reason or another. It’s very difficult for most people to live with someone with a chronic illness…it’s just a nightmare that never ends. You really have to love someone very deeply in endure the ups and downs, not to mention the inherent mood swings that go along with suffering.

David and my case is also compounded by the fact that it isn’t entirely understood…unlike diabetes or MS (which have their own mysteries and frustrations), our immune deficiency doesn’t even have a name yet…making it almost impossible to create a rallying point of support (ie, ‘but she has MS!’ or whatever the severe disease is).

In order to simply my expressions of ill, I often say to strangers ‘I have MS’, just to convey that I have a serious illness that requires ongoing medical attention…and it is partly true, based on my brain lesions. I simply by saying ‘I have MS’ mostly because most people don’t want to hear the ongoing saga anyway.

So here we are, the chronically ill, a seed of existence that grow directly due to the love and support of those around us…and goodness knows I’ve been blessed to have an enormous amount of support over the years–support that has enabled me to stay on the planet longer than I should have.

Like a plant with no water or sunshine, once that support is gone, that’s pretty much the end of the story…there is only so far we can go without assistance.

Call it dependence, call it welfare, call it whatever you want,

but the truth is anyone who suffers with a severe chronic illness can only survive if they have enough support from loved ones.

It is frustrating…and depressing, too. Especially for the independently minded like myself.

And sometimes, that support just starts running out–

Begin forwarded message:

From: Tara
Date: May 23, 2013 11:47:00 PM PDT
To: Grampa Joe
Subject: Re: I’m sitting on set bawling

Lol–your email made me smile 🙂

I’m feeling so many mixed emotions right now…I feel so much guilt, so much sadness, so much hopelessness…so much pain. I still can’t believe what Peter did. I am really starting to wonder if it is time to give up.

David made me smile on set today…He had a good time, which made me feel a little peace…it was bitter sweet though. Sometimes being on set can be difficult…I had so many more hopes than dreams than being a stage mom 😦

I hope everything will be ok…we can definitely figure out some kind of long term plan if we need to. (Maybe living in the backyard of your place, or putting a trailer on Kathy’s property…with a solar powered greenhouse?) When I was at the bank getting David’s Coogan account, I asked them how much money would have to be saved in order to generate $2,000/month in income, and I was *shocked* when they said it was a lot of money…it made me sick to my stomach. And worried, too.

Making sure David is ok for the long term is more important to me then my being ok at this point…that’s something we can talk about. If I have to die in order to ensure there is money for David, then I will die. That is not a problem.

David was so happy it was me taking him to set today…I wish I could do it more often. I told him this was the summer for him to get into game design and app design…I think he could make a lot of money designing apps one day. It’s actually one of the few things Luke and I have ever agreed on…

Thank you for being you…Your heart is bigger than your brain, and I know you know that. I’ve walked the earth now for 8 more years than most people would have here in the United States, as a gift from you. That’s 80% of David’s life he’s had his mother direct from his godfather…that’s got to be a record somewhere 🙂

Sometimes I wonder if it would have been better if Dr. Andrew Schroeder hadn’t caught me in the hallway…and put pressure on Hanberg to pull my blood cultures…and I had slipped away in Nov 1, 2005, like I should have….all this money to fight an infection for all these years…like an AIDS patient being kept alive by expensive medications…and I am losing the battle.

(This Zosyn is expensive, and it’s just barely working…nothing works as well as they did the first years. The Zosyn is definitely helping, but just barely. The Zithromax (which used to be great), was worthless.)

I don’t want to cause you undue hardship or sacrifice, and I definitely don’t want to sacrifice David’s future, just to keep me on the planet…

Once I get the mess cleaned up, I think I should make a list of things I would like to accomplish before I leave the planet (like finding my gravesite at forest lawn, writing a book…that might take too long 🙂 and then get this list done as fast as possible. I would like to leave one good thing behind…

I had hoped I would leave behind the answer to what is wrong with David and I. At least I’m leaving a lot of clues. I’m grateful for the extra time I’ve had, just for David. Even without ‘the answer’, at least a mark got left that there is a problem…if I had just died in 05, it probably would have been written off as a tragic accident. At least I was able to dig up my father’s history.

I know I’m running out of time…

Thank you 🙂


(I didn’t make it to Scribbs, because I couldnt work out the ride, and unfortunately Dr. Ahern wasn’t available until July 25th…he’s supposed to be good at getting approvals for IVIg. Maybe he will help.)

On May 23, 2013, at 9:09 PM, Grampa Joe wrote:

Oh stop!

In a message dated 5/23/2013 9:02:46 P.M. Pacific Daylight Time, Tara writes:

I just can’t stop crying.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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