Oh where to start and end! Ended up in the ER 2 weeks ago for an abscess that turned into the size of a golf ball. I ignored it because I was lead to believe it was just a cyst type of tumor related to FAP and that was that. Well wrong. I have 2 abscesses. One can’t be found just yet but the huge one was clear as day so it was cut and cleaned. I have had such bad pain since so not sure if I formed cellulitus or some MRSA. I have left over Vanco from treating the C.diff so I just took some more in case I have an infection. I have a follow up appointment that was supposed to be for last Friday but got moved to this Friday. I am sucking down pain killers all day long, pain is everywhere. I am also having my case reviewed by Dr. Remzi in Cleveland Clinic to see if my pouch can be moved and have my valve and stoma fixed. It is such major surgery all over again but my quality of life is very poor.

Jarrad and I are going to be putting in a 30 day notice since we just can’t pay rent anymore. And if we do have any money come in I have to figure out if I need to pay rent or health insurance and car, phone payment. So I thought about just packing up what I can and sleep in my car. Basically be homeless until I hear if we get Govt. Housing. How sad is that? I come from a high-class family, I grew up with a beach in my back yard in one of Florida’s prime neighborhoods and I will be homeless. Main reason I am staying in this area and not moving in with a relative is I can’t travel to get to my doctors. This has to be just a few month temporary. For now I am looking into camp grounds. Most are just 14 days but hey it is better than living in a parking lot!

Since Jarrad has 30% VA disability hopefully getting housing when our number is called won’t be a pain. Sad.. I was making 6 figures once and now I am broke. I hate this disease and this economy.

Weird and scarey times.


7 thoughts on “Life

  1. Hi Vanessa, danm i am so sorry to hear how messed up things are for you.hope fully you guys will get that housing. maybe you can get a cheap RV, some are really big, but still thats
    probably 2000-7000$ plus where to keep it, but if it was a nice one maybe you would want to stay in it for a while and i think that some places only charge like 300 per month….well that is in FL and i know your in the northeast where there aren’t even that many RV parks….just a thought. I have to ask why would you have your pouch moved?i asked before i my surgery if they could put mine higher cause i was worried about how it would feel near my bladder and they said no they all go in the same spot…well except i heard of one lady who had hers on the left side cause she was soo tiny and i guess her right side was all messed up with somuch scar tissue from her ileo,or something like that. will they have to build a new pouch or just a new valve. you are soo freaking brave for considering getting a new pouch ,that surgery is so terrible.on the other hand i no your quality of life is non existent and your not down with a poo bag.

    • I was told I can move it. Mine is attached to the wall so they can sometimes tack it up higher. The stoma can be moved though. Mine sits very low.

      I wouldn’t need a new pouch just valve so I hope the surgery won’t be that bad but it is major. Still waiting to see what my real options are.

      • BTW there is a nyc who does kpouches, i spoke to him before i got the BCIR, i forgot his name but said hes been doing them for like 15 years.i read they r going to send you to dr dietz,i think thats what you wrote on least you dont have to get a new pouch built.fuck that hurt. i dont know why the hell they put these pouches so low.It is just a matter of time before they adhere to the bladder,(says susan k), which cant be good.

  2. Our health care system, as any of you well know, is broken. In many industrialized countries the thinking goes that the sicker you are the more help you receive to get you to wellness. In the US it is completely the opposite; the sicker you get the more you are forced to pay. It is made very clear that you are on your own and may have to become a pauper if your body doesn’t return to health. For all our collective wisdom we have the highest healthcare costs in industrialized countries so this is obviously a stupid and counterproductive model. Worst of all we have created countless people who not only have horrendous health issues but must also must endure needless suffering, struggling with their financial plight . What a way for a sick person to try to get better.

    • I have no issues with Medical care. Not sure where that part came from. I have excellent doctors for the moment. Just have to travel to them ; I have wonderful healthcare as well.

      • If you had your condition in another industrialized country, you would not be on the verge of being forced to live in a park. There would be layers of safety nets to help you to cope with your disease. You would be able to stay in your apartment and get the care you need. That’s where we get it backwards. In France the sicker you are, the more help with everything you get.

        Your doctors may be wonderful, but the delivery system that we have heads every chronically sick person to the poor farm if that person is not relatively wealthy.

        An example is my male unmarried cousin. He is an optician by trade. He also did comedy clubs on weekends for extra money and was a hard core surfer for years, a relatively satisfying life for a middle class taxpaying American…until he got cancer at 50. The cancer knocked him for a loop, but it was the chemotherapy that almost killed him. It permanently damaged his heart so he cannot work. Many many doctor bills later and being unable to work, he has basically become a pauper and is at the mercy of shrinking state and federal resources. He has had to sell everything he owned, move out of his apartment in oldtown Sacramento and move to crime ridden complex in the very poor part of town to be close to UCDavis that literally keeps him alive. He has great doctors at UCDavis, but, the stress of being a pauper and living dollar to dollar and worrying which governmentaly program will be cut next has made his quality of life horrible. We send him money and as much help as we can but anything can change at a drop of the hat.

        This is a very real dark side of our healthcare system. Shamefully, it goes hand in hand with the great doctors in this country. And it does not have to be this way either. But, that is a whole other blog.

        Your illness is a battle only the most rugged can stand up to. My point is you shouldn’t have to lose everything you have ever worked for and be at the mercy of a grinding cash sucking system while you are fighting this battle.

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