Monday, September 28, 2009

pros and cons list

I'm anal we all know here is my pros/cons list for SSDI, LTD and working.
I emailed my social worker at clinic today to start the process of SSDI. Or think about starting it. And figuring out when.



Go to school full time

Not stress about going to school and trying to work

See family and friends more

Possible improvement in health

Work small part time job for extra income (Barnes and Noble? Discount!)

More time to read/crochet

Exercise more regularly

Grants for school maybe

Place student loan repayment on hold until I can work again

Food Stamps / State insurance


Less money

Health Insurance issues

May not be able to get student loans

Might not be able to pay all bills

Money stress

Full Time Work


Keep current income

Health insurance


Like my work friends

Easier to get student loans (possibly)


Sleep deprived

Can’t exercise whenever I want

Will wear myself out with school and work

Can only take one class at a time

No life / never see friends or family

Work related stress



Go to school full time

More time to read/crochet

Exercise more regularly

See family / friends more

Possible health improvement

Less stress of working

Can get SSDI while on LTD, LTD will just deduct SSDI payments


Can not work at all

Might not get any grants

Dealing with the insurance company every week to get paid

Stress about going to school while on LTD

Unsure of health care options

Sunday, September 27, 2009

Health Care Reform

I figured it was time that I took a stance on the big heath care reform issue. Yes I voted for Obama. I am a Democrat, and he was the lesser of the two evils running. I was not overly thrilled with him, but I prefer him over McCain. I do like Obama. I think we need someone young with a fresh outlook running our country and trying to get it back on track. He has not been in office a year yet and people are disappointed in him. Rome was not built in a day my friends. These things take time.

Obama's Speech

Follow that link for the full speech he gave to Congress on the 9th.

Much of what he said I agree with. The problem is making it happen. He has many great ideas, ideas that could possibly turn our country around. But with the government’s system of checks and balances, it will be a hard road to get those policies into law.

I’m a middle class citizen who receives my health care through my employer. I pay $110 a month and have decent coverage. My co-pays are high, but not as high as some. I also pay for the higher/better insurance that my office offers. I pay as much as $50 per drug per month. On average my co-pays are about $300-400 a month. That’s a car payment, on top of my car insurance, rent, jeep payment, cell phone, gas, food and student loans. I work my ASS off so that I do not have to rely on the system, yet I can’t afford the insurance that I have. And come December, everything will go up again. It’s out of control. It’s also at a point where it might be cheaper to not work and go on welfare. When a person who WANTS to work, is forced to not work because it is “easier” to be jobless so they can afford their medicines, you know there is a problem.

THAT is what I want to see addressed in the health care reform. I want to see middle class, hardworking citizens be able to pay for health care AND be able to pay for the medications they need to take. I have no issues paying for my own coverage, I have no issues paying co-pays, but when I can get the EXACT same drug at a pharmacy without insurance and pay only $4, but pay $30 with insurance, then I want something to change. Don’t believe me? Target has my Bactrim DS tabs on the generic list for $4, if you have no insurance. I pay $30 at Rite Aid with my insurance co-pay for generic Bactrim DS. They are IDENTICAL. So why can Target do this, yet the insurance company is making me pay 6 times as much?

Another example…I need oxygen when I work out. I am lucky enough to have a treadmill at home so I can use my concentrator when I exercise. I called my insurance company a couple of weeks ago to find out how I could get a portable concentrator so that I could travel and also run outside while using it. They told me that I would have to pay half of the cost if I could find a DME (durable medical equipment) retailer that would do a lease to own option. My price…$2500 give or take. I would have to pay that much out of pocket! Where am I to get this money?

I agree with Obama’s plan. It has what I feel would help the country and if it can lower costs and ensure that everyone will have coverage than good. That’s what we need.

I know many people are hell bent against the plan and everyone is entitled to their own opinions. But step in my shoes, or the shoes of someone with a terminal illness and tell me how it feels to HAVE to work to get coverage because you are not able to get insurance on your own. Or if you do, the insurance company doesn’t have to cover the pre-existing condition.

For those of you who are against the reform. WHY? Because you don’t’ won’t to loose your current coverage? You won’t. Because you don’t want to pay for other people’s insurance? You do that NOW! We are already paying ridiculous costs for Medicare and Medicaid because the price of healthcare climbs each year. Under this plan, costs will be capped and the system will be treated much more like a business and not a monopoly. Right now, prices can be set basically anywhere since there is no where else we can go to get health coverage. This will change. The government will offer a lower cost health plan that will allow people to be able to purchase their own, if they can. And it will build competition to the big name companies now, driving prices down. How is that a bad thing?

Another issue I know many people are not happy with when it comes to the reform is requiring everyone to have some type of coverage. Yes this may seem harsh and what not but think about it. When an individual goes to the ER, who does not have health coverage, and gets treated, who do you think pays for them? We do. Through taxes. If everyone is required by law to have coverage then this will bring the costs to us down. There will always be those who slip through the cracks, the country is too large for that, but if the majority of people get coverage then we can essentially stop paying for them. It will be like auto insurance. You are required to have coverage if you own a car. Many don’t and we pay for them through higher premiums. If you get caught driving without insurance you pay fines etc. I don’t see anything wrong with that. Same goes when applied to health care.

Everyone SHOULD have insurance. You never know when something bad will happen. You can wake up tomorrow with a rain tumor and if you don’t have insurance then how are you getting treated? Don’t you want options? Don’t you want to be able to chose who you see and where you get treated?

If Obama’s plan is passed and goes the way it should (or even with some modifications) our country will be much better. We are one of the richest countries in the world yet millions and millions of us can not afford health care. A basic right. Life, Liberty and the Pursuit of happiness. LIFE people, LIFE. Without healthcare I can’t have life, I’ll be dead. Whether or not you agree with me, or the reform bill, you have to agree that something needs to be done about it.

Wednesday, September 16, 2009

Wednesday's update cause I an't think of a fun title!

I had my first study visit with the study I am not allowed to talk about :) It went well and I JUST made it in. The cutoff for FEV1 is 40% and I blew a 41% at best. Mt first one was 35% and my second one was 38% so I did two more and got 40% and 41%. So I am IN! WOOT!!! Let's just hope I can keep it this high until next Wednesday when I go for my first dosing.

I started Colistin again on Sunday. It's making me cough a BUNCH but there isn't a whole lot of loose crap in my lungs so I am just hacking dry air. Fun.

I am working on two lengthly blogs so be prepared by this weekend to get at least one. I'm working on my take on the healthcare reform bill. Since every Cystic should be somewhat informed about the whole deal so I am going to give my opinions, good and bad about it.

Ok short sweet and to the point LOL!!!!

Hope all is well with my readers!!!!!!

Friday, September 11, 2009


Don't ever forget.....

God bless the men and women who fight everyday for our freedoms.

Monday, September 7, 2009

Just another Manic Monday...

Another painful blog for my readers. I swear I will be out of this funk this week. I will make sure of it!!!!!

I did have a fabulous weekend so that can make you all smile.

This week there were 5 new babies born to 4 of my friends. Yes one set of twins. FIVE KIDS IN ONE WEEK! And all of the parents are friends of mine (well at least one of the parents is anyway). And no my brother and sister in law are not among them though I will have a niece or nephew by September 14th if they don’t wanna come out on their own.

So for obvious reasons it kinda depressed me. I love babies and I am so stoked for all of these people. But it also reiterates that I can not have any of my own. It depresses me when I look at all the pictures of the newborns and see the happiness and glow on the new mommy and daddy’s faces. I want that. Of course that leads into my real reason for this post…

Hysterectomy. Yeah the big H word.

I have thought about this and with my family’s history of cancer (granted only colon and one uterine) I have been considering having mine removed. Added with the cervical pre-cancer cells found and I am all about avoiding Chemo and the like in any way I can.

However, this is a permanent decision. One that once done, can NOT be reversed. Sure there are plenty of positives to this…no more periods, no chance of getting pregnant on a one night stand, reduced risk of cancer. But what about the negatives. Never having a baby on my own. That’s really it. I’ll never experience pregnancy if my uterus is gone. Doesn’t matter if I will never have a baby anyway. The chance is always there. With the prime piece missing from my body I’ll never have a shot at that, no matter what.

My BFF asked me Saturday if I got it done, would I regret it. I told her I would regret it until the day I die, but there is nothing I can do about it. I can’t have kids and getting rid of it makes sure of it. It is like a security thing. This way I won’t go do anything stupid like get myself knocked up. Not that I would but hell in the heat of a passionate freak out I might get that brilliant idea. I tend to act then think so it isn’t entirely out of the question.

This is obviously something I need to think about for much longer than a few days and I plan on it. I won’t be jumping into serious surgery anytime soon. I will discuss it with both the genetic cancer people and my CF dr.

I know that I can’t/shouldn’t have kids but a part of me secretly hopes that someday I will anyway. That maybe I will get that chance to feel the baby move inside me and to look at their face after they are born and feel unconditional love for another human being. To play with their feet and hands, kiss them, change them, feed them. Its not the same when it is someone else’s child. No one can ever mimic the feeling of holding your own baby, your own flesh and blood. When I die, this will always be my biggest regret. So taking out the one piece that can give me babies scares me. It is admitting that I will never have one of my own.

I’m asking all of you to avoid the whole adoption and surrogate mother talk. It has never and will never be an option for me. The only parenting option I will go for besides my own baby inside me, is being a step-mom.

Friday, September 4, 2009

Emotional roller coaster continues...

**Warning…will be a bumpy ride, with some deep holes here and there so buckle up**
I am still on an emotional roller coaster from last Friday. It just seems to go higher and higher. At some point I will reach the peak and come flying down, my hands waving wildly, screaming at the top of my lungs.
Saturday did not end up being all that much better. I had a set back exercising. I was much more SOB and my tolerance went way down. I even had my O2 set at 3L hoping it would help me keep my O2 up and HR down. No such luck. I still dipped into the high 80s. While not all that horrible it just seemed to add to my “issues” for the weekend. Sunday I was just blah and didn’t feel up to doing much. I did get to see my FB (fuck buddy LOL) Sunday night, but I was out until 2am so I was EXHAUSTED Monday morning. But that at least brought my spirits up a bit. Then Monday shit hit the fan with he and I and we decided to just be friends for now (long story not getting into it on here). I’m due for my period which adds to the emotional-ness and this news, for some reason, threw me for a loop. I was upset, but I’m good now haha. I’ve also been stressed at work trying to get this project out which went out yesterday thankfully.
Tuesday I woke up in a better mood only to have it thrown back down after talking to the genetic counselor. She discussed the results of my Colonoscopy with me fully. Apparently they found a lot of little benign polyps which is good. Then the one large one was synonymous with Lynch Syndrome and was pre-cancerous. So that was fun news to get on Tuesday. YAY! Granted it was just PRE-cancer but it still makes the body shake. I pretty much shook for the rest of the day. They did get the whole thing thankfully, but now I know I need to go back once a year. We chatted and I told her I wanted to come back in to discuss some things and she said I could or if I wanted to do it over the phone that would be ok too. So I think I might just do that so I don’t have to pay $30 and drive to HUP. I just want to discuss the whole hysterectomy thing considering I had pre-cancerous cells on my cervix a few years back, that were removed. Like I don’t have enough fucking issues with CF.
Being in this emotional state has made me do a lot of thinking, which is NEVER a good thing with me. I keep thinking about love, and finding love and how I am not open to it. I want love. I want the kind of love where you are best friends, soul mates, meant for each other. All that gushy sappy shit you see in the movies and read in books. But the thought of letting myself find that and open myself up to that is so fucking scary it keeps me closed. It’s so hard to let those happy feelings in when all you can think about is how it will end badly and you will get hurt. Yet you don’t know that for sure. You just assume it will because every other “relationship” has failed miserably.
Then I think about all my past relationships. All the ones that failed. I see a pattern. That pattern is that I chose guys that are in the same emotional state as me…not open to love. Which of course at the time is not obvious to me and when it does become obvious I just ignore it. You can ask any of my friends and they will tell you the same thing. I fall for guys that are not available, emotionally and physically. I fell for the cop, who had a baby’s momma at home. I fell for another guy who had a girlfriend. I fell for another one who had a wife. I fell for one who thought he wanted me but couldn’t figure it out. (Fall does not mean love, fall means feelings that given time to “fester” could develop into something resembling love). I fell for another that was getting divorced and didn’t want a relationship – just sex. In each of these cases I KNEW nothing could ever come from the “relationship”, yet I pursued and conquered. And in the end, I ended up hurt.
Flip the coin around and let’s look at the men that have tried to date me that were available. There have been a few, yet none of them succeeded. I was that girl, the one that the nice guys talked to and helped with their issues, and wanted to date, but the girl never gave them the time of day about dating. Yeah that was me. I was more than happy to seek their advice about the bad guy of the week yet I couldn’t see that they would have been much better. And if they did succeed in getting me a few dates, I ended it after a couple of weeks. Kim says I like a challenge. I think I am too scared to be happy.
Sunday night my FB (fuck buddy remember) and I were discussing relationships and I remarked how I used to be such a guy when it came to these dating things. I was always the one ending it and never the one that got hurt. But that was because I had been hurt severely but the one guy I thought I was going to marry. I was 21 years old. So for 7 years, almost 8 I have had this wall that has been built up around me. Some men have started to break through the cracks but no one has penetrated it deep enough for me to remove it.
Looking back even farther, before said relationship, I was the same way. I don’t know if I was just that way because I was young and inexperienced or because I was just made that way. Sometimes I think that I am just wired wrong in the love area. I want to be able to curl up next to my man and tell him everything, yet I don’t want to put myself out there to find that man. How can I be open to love when I can’t even tell someone private things about myself. I don’t talk, I don’t give, I don’t share. I just sit there soaking up what the other says, growing feelings and then running in the end. This does not make for a strong bond.
A part of me thinks it has nothing to do with CF. And another part knows it does. I just wish I could get to the bottom of it so that I could finally someday let myself feel the happiness that so many have in love.
I shall leave you with a link to my poem. I wrote this years ago, and ironically it won a poetry award a few years back. Sometimes the best things come from broken places, when your heart is shattered, pieces scattered all over.