You want to put that where?

A journey into IC and Familial Adenomatous Polyposis (FAP). 2 seperate diseases of the bladder and colon.

Archive for the tag “fap”

06 May 2013

Chalked Iron

So I have posted here before about the tshirts that I designed while I blogged during my F.A.P. / rectal cancer diagnoses and surgery hell and how it turned into this awesome brand called chalked iron. Well turns out my business partner (Damon Gochneaur) was the shaddy douche bag I expected for awhile. Had to lock him out of twitter to investigate weird messages and free shirts popping up on the threads. Then came across where he claimed it was a Texas company (when it is not, it is a Delaware company) and gift certificates on sites. Shit I never even knew about. Since he did all the merchandise shipping he was basically ripping me off.

After he got butt hurt he was locked out of twitter for a whole fucking day while investigation was going on he decided to change all password to the business’ webhost and start funding all transactions into a bogus gmail account (thechalkediron@gmail.com) and refusing to discuss any of it because I called him a dick. Maybe because he is. I knew he was shaddy when I worked with him at GR and I guess this is a life lesson, a life lesson that is going to cost a pretty penny for an attorney to sue his ass. I own 50% of this business and am the primary owner on the LLC and according to the state so I guess it is in my favor. You can’t embezzle funds from a company, it is a felony offense and fraud. So please, don’t order from chalked iron. If you want a shirt I am printing my designs on my new brand hopefully once my kickstarter account goes live. buying a shirt goes into this asshole’s pocket and I see none of the funds. Sad since I paid extra to print the latest tank tops. Buying shirts don’t go towards the taxes he is supposed to pay but hasn’t so my credit is fucked, buying shirts supports a fraud, buyins shirts doesn’t help pay my cleveland clinic visits, health insurance and my copays, buying shirts is a kick to my gut basically since I own them all and see none of the money. But please feel free to remember his name. If you want to guarantee a shirt will get shipped to you, visit my blog first week of June for the link to my new kick ass brand that isn’t all about kettlebells. My brand is a neat brand that reaches everyone.

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17 Apr 2013
7 Comments

Life

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.

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27 Mar 2013
2 Comments

You give me fever

I have been feverish all day and feel like the aches are all over my body. Go from hot to cold chills. The huge mass in my butt cheek has turned into a throbbing big huge ball. I am tying to get into Hopkins because there is ONLY ONE DAMN colorectal surgeon as Georgetown and he is booked until May. My GI at Georgetown I also want to fire. I never called a doctor so much to not get any help. And he is the chief of the damn department and well known, even Shen says how excellent he is. I feel the health care in the VA/DC area is horrible. I am appalled by the crap I have dealt with here.

I am jobless, funny how the minute the guy I worked for at USA Today said I looked unhappy. After I briefly explained I haven’t been feeling good, I have a serious disease he decided to cut my contract. I mean, it is ok because it was a sweat shop where you are just a drone pushing pixels and he is Just another tool in the tool box he is. I am interviewing for a job tomorrow morning and Friday afternoon. One I really hope I get so I want to get this fever and lump under control. I have to work for now, my business funds itself but not enough to live off of. I hate having that fear of being homeless. Dire straights for sure right now and living here is not cheap.

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07 Mar 2013

My guts are screaming!

Or should I say my gutless guts are screaming since so little seems to be left. I am off to Cleveland Clinic once again next week to finally have Bo Shen scope me. My surgeon put me on Suprax and a drug for candida (yeast overgrowth) since we just have no idea if I have pouchitis, candida etc. I was great for about a week and now I am the WORST I have ever been. Something is wrong, I just hope he can find out because it is unbearable.  My food rips through my guts the minute I swallow. Gas is nothing like what you get with a colon. For me it feels like acid is churning inside me, it rips through every part of my guts and the pain is horrible and you just can’t relate unless you have it.  So I am off all antibiotics and other meds for yeast so if something is going on they won’t mask that in the scope. My valve feels like it is ready to pop the pressure is so bad. I double over with pain and try to move it away from my stoma so I get relief. You can hear my guts rumble and it may be funny to some people it is torture for people like me.  So I am on Norco to help with the pain and to slow my guts down. I hate the stuff. I have bottles of Norco and Oxycodone that are even expired because I just don’t like being on pain medicine. I want to be normal or close to it. My pouch feels like it is a cactus inside me. My small bowel is so hyperactive it kicks my spine around.

I have had a knot that appears on and off that I thought was a Desmoid but back in Dallas my favorite Colo-rectal Oncologist said it wasn’t because it did not move around and my scan didn’t pick it up. Here are Georgetown when I saw my new GI I mentioned being in the ER recently due to a possible stomach bug and then this knot was back in my ribcage area, hurt, food wasn’t passing easily and liquid I drank gurgled back up. So I had a cat scan and it showed no blockage. Saturday I had this feeling come back in my rib cage and it was intense to where I wanted to drive to Georgetown Hospital and have my GI paged. I just decided to wait until I see Shen next week, I am so tired of sitting in ERs to get nothing accomplished. But I know something is now very wrong. Food is going through me so fast. I have cleaned up my diet as strict as the Candida diet is. I have no sugar I am consuming or Splenda. I sucked it up and started to use Truvia (Stevia) only sweetener approved on Candida.  So it can’t be diet related because between juicing and not eating out almost everything I consume is whole and not processed. So there has to be something else going on. Maybe some large polyps in my Duodenum again or adhesions or worse. I can tell there is a major problem so if someone tells me they can’t see anything, even coming from Shen I am going to flip out. I can not live like this and I have no fucking options. There is nothing else for me, I can’t take out my whole digestive tract…. 

My mother is stressing out that my disease is progressing. I guess even my own family doesn’t get my disease lol Bad enough none of my friends do, they think it is a diet related thing or I just had cancer now I am better. Erhhh WRONG. There is no remission for FAP, there is no cure there is nothing one can do to make this disease better or worse. Diet is only there to help bacteria or yeast overgrowth , nothing to do with FAP itself just your GI issues you have from a small bowel acting like a large bowel. 

I picture my stomach being carpeted with polyps as I type this. I have yet to get one in the actual gut but something is not right. My ulcers in my esophagus cleared up with previcid since that was on the verge of being cancerous so it can’t be related to that. I even refilled my script in case it was an acid reflux thing but this is far beyond that at this point.

I feel bad for my family more than myself. I just live in absolute torture but they think it is something major and I might be dying. My mom might have grown 50 more grey hairs in a day. My husband I feel bad for, he sees me at my worst and it is like being bipolar. I smile and make jokes so he doesn’t feel like he is always with someone who is miserable and crying through out the day all the time. Trying to make things normal, as normal as I can.

I am glad I get to go to Cleveland again. I loved walking around that city. Last time it made me feel so much better. That is when I went home and packed it up to move to the DC Metro area. And here I am, living in a suburb just like I did in stupid Dallas. I need a walkable city. When I am better I am going to force myself to metro it into the district more often. If I stay in Virginia all the time I will go crazy.

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18 Feb 2013

Failure is always an option

Even if you don’t like MMA or anything related to a contact sport. What Chael Sonnen says here can really apply to anything in life. And it sits deep in me on many levels. Mainly because we have to fight every damn day with a disease like F.A.P.

When you live in such chronic pain daily it is different from someone that has a heart disease and might die at any moment but doesn’t live in pain, so to them it isn’t that big of a deal. The number of  suicide people with IC alone have been estimated to think about is every 30 seconds a day.  Of course most people keep trucking along because we don’t want to die but the thought of no pain is the kicker.

We make pros and cons of how life will be or how it could have ended. 2 years to live they said I had and I would be on my last year now in Australia or Fiji (didn’t decide where to live) waiting for the cancer to kill me, slowly and horribly I am sure. Scopes, cutting out tumors, cancer, polyps. When is enough enough? Why do I have to keep fucking getting scopes? To go every day with the insane pain my my guts. Or where the 20 pound pouch that feels like it is going to fall out of my non-existent asshole makes life worth  living. I believe if you have kids it is a different story, you want to live for them. I on the other hand, being an only child, had surgery mainly for my mom. She asked me today if I had surgery because of her and I said mainly yes. I am sure a part of me had no idea how bad life was going to suck after having a colon removed that I decided to give it a try. I knew deep down I was going to regret it. I remember waiting to go into surgery balling my eyes out, and people just said “hey, you are taking out what is killing you.” I saw it as dying right then and there. I should have gotten off that fucking operating table when I felt the urge. I was so dead set on it that I made my surgeon change the surgical waiver (I have the photo on my phone actually still) that did not give him the permission to give me a permanent ilesotomy if the BCIR was not possible. He was so mad at me because I was picking death and tried to talk me out of it. I refused to live with a bag and I refuse it now. I will always pick death over it. Yea yea yea all of you ostomates can come here and bitch at me and tell me how grand life is with it. Well fuck you and your opinion, I have  my own just like everyone has an asshole, well some of us at least ;)

So sitting at Georgetown university, when my new GI said to call Monday to book my next upper scope. I nodded and took the business card and said SURE. Fuck that I just had a damn scope and my guts hurt. I am so done with scopes. That Monday was over a week ago so shows where my taking care of my health really sits with me.

I am a polyp farmer motherfucker

So I have a shirt I made when I had cancer that says “Lift Heavy. Fear nothing.” I used to lift heavy weight, now I just feel like a heavy weight. My guts weigh me down and hurt. I can’t eat salads or veggies and with someone who has had 60% of a stomach removed and no colon and some small intestine left I am clueless why I gain weight and can’t lose anything. You would think I eat big macs by the second or roid up and eat 5k in calories a day when I really eat maybe 800, 500 on a bad day and yes I know some people will say maybe you aren’t eating enough calories. Well EHHHH I tried that as well. I would eat normal meals to prevent strictures from forming in my guts. It is frustrating and it just adds  onto the list of cons in life. My deadlift is 155 pounds, I can’t run without my legs wanting to give out from extreme muscle pain. My crossfit numbers fucking suck and my brain is full of negative shit. So maybe if I just say no more to this disease and let all that weight fall off my shoulders I can stop going 200 miles a minute and breathe. If I have cancer right now what can I really do about it? nothing so maybe life isn’t meant to live fighting the fight every damn day but looking back and realizing that it was a good one I lived and letting things just be the way they are. So on that note I want bacon wrapped cigarettes and bourbon every hour.

I have 2 incurable diseases and I smile every day like nothing bothers me when in reality the only good thing to a scope is the propofol. Michael Jackson was onto something when he abused that stuff. No pain, no worries.

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11 Feb 2013
3 Comments

Skip a Beat

Image

I hate wearing the color blue and since blue is my color for IC and Colon Cancer/Rare Disease I dyed my hair instead. Then I remember I am 36 and way to old to be rocking blue hair. Well, I also forgot that the shit runs down your face when you sweat and how am I working out with blue face? Anyway, it was hot for a weekend. I might do it again, sometime.

So this past week was rough and this weekend was pretty dark. DARK I tell ya. Sometimes I wonder how much the body can physically take. Yes I am sure the mind plays some part to survival but only so far. I also don’t get how when you say you think of dying people assume you mean suicide. Look if I was suicidal I would have been fucking dead A LONG TIME AGO! someone with IC alone I believe thinks of dying or suicide every 30 seconds of the day. I mention with my disease and pain that I am just waiting to die. This doesn’t mean I am going to do it, to be clear. I am just existing for the most part and this weekend was a good example of that. Walking through the WFM parking lot, my guts felt like they were going to push through my piss hole. Literally held my guts in as I shopped. I think the papaya enzyme I started taking was making me flare. I will see how tomorrow is and not take them. It is always a guessing game when you eat or drink something new. Have to play the guessing game to what fucks your insides up.  The knot in my gut where food hangs out is freaking me out. Your heartbeat speeds up and feels like it has to work more and sometimes has palpitations. Especially if I have gas then it skips a beat. So yes I wonder when the body gives out. Just tanks, checks out. Sometimes I go to bed at night and wonder if I am waking up in the morning. Then that feeling goes away for a bit. It is a freaky thing though. People do die in their sleep.

 

But again I will say this is not a suicidal post this is a post about dying and living. It is sort of like the idots out there that think if you own guns you are going to flip your lid and shoot someone. Same shit, own guns don’t kill people and def never kill myself. This is a post about living with chronic pain and the mind fuck you live daily. I live every day though because I want to and think that this pain will eventually be worth it in the end.

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07 Feb 2013
4 Comments

Wrap that kale around your head and jump off a cucumber

People that bitch about eating greens or any veggie in general. I want to walk up to them and smack them in the face and say “DO YOU KNOW WHAT I WOULD GIVE TO EAT THAT SHIT!” People take things for granted and then bitch they don’t like eating something. One day you might not be able to eat the things you once loved. Maybe then you will get it. Or not. Depends on how selfish and clueless you are.

I ate a salad and some devil substance called couscous and quinoa. You would think this being the third time eating quinoa and the fact the last 2 times almost killed me. no I am not bullshitting. I thought my guts were backing up into my heart, I wold have learned my lesson. Nope I keep thinking by some fucking miracle my pouch will start to digest things better like it has with proteins and some other items.

I started to have a lot of pain and extreme contraction like spasms and would ease up when gas passed. So my surgeon though I might have a small partial bowel obstruction and mentioned drinking fluids. Day 4 of fluids and being in an absolute nightmare I headed to North Virginias BEST Voted hospital. Inova Fairfax. now if this was my beloved Baylor in Dallas or Cleveland Clinic in OH I would have had no bullshit thrown at me. First they asked me some questions about symptoms and then drew some bood for testing and hooked me up to an IV to get fluids, zofran and here is the kicker DELAUDID! Yes give me the hardest drug out there, who gives a fuck how I drive my car home. So since my blood work looked fabulous they saw no need for imaging and discharged me with “abdominal pain and stomach virus.” Never mind that I have a knot in my left side and burp up water or juice when I drink something. It feels like I have razor blades going through my whole digestive tract and someone keeps blowing everything up like a inflatable boat. And that I have 2 hernias, one a hiatal that can cause an obstruction. I am just floored how bad health care is so far that I have experienced.

this one med student was asking all about my disease and then the stupid came out in her and she stared asking “Well how do you cope with all of this?” I just looked at her with the ‘are you fucking kidding me, bitch’ face and said “I live my life every day. Somethings you are born with you just don’t get to fucking keep and you move on.

When did med students become shrinks?? So uncalled for. I should have just said, sob for about 3 hours a day, feel like pulling my hair out in fits. Stress about every scope I get and what new cancer might I have today and why do my guts hate me so. Or how am I going to work tomorrow being this sick.  yea come live my life little girl. You wouldn’t know what to do with my mess. Hell I barely do. But don’t ask someone how they cope. We cope by lving. We fight every fucking day and not to hear some little girl ask about getting along because we might as well just be dying. But we are dying every day we are alive. Sick or not sick. Every day you live is one foot closer to being in the ground.

So I see this GI Friday and if he doesn’t fucking help me I am going back to Cleveland Clinic. Fuck this bullshit.

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30 Jan 2013
1 Comment

Stuff and things

Am I the only one that is jealous over people in wheel chairs? For me I am jealous because if it was me in their place maybe I wouldn’t feel the pain my pouch causes, the nerves that are wrecked that control my bladder. Just the movement in my small intestine. Yes, I can safely say I am jealous over people in chairs.

I will never understand other people’s illnesses or anything actually that I have just not experienced. What I wish I could do is get over the phantom “limb” rectum syndrome. I watched an episode of Grey’s Anatomy and it was about phantom limb and she felt like she was losing her mind, night terrors, pain, etc. Same shit but mine isn’t a limb. I lost a long ass tube and the exit that goes with it. Having a barbie butt (asshole sewn) is really not fun. I don’t give a fuck who loves it, they are lying. When you squat, stretch, etc. You have that feeling that “HEY YOUR ASS IS SEWN SHUT, NO STRETCH.”

Someone messaged me on FB who is recovering in the Palms after getting their BCIR and asked if I had certain things going on down there like sores, or pimples I believe. I had to think back to last year when I had this surgery. I remember after 20 days you are allowed to shower. That is the first time I ever washed my ass basically. At that time it was like a drawstring bag. Only way I can really describe it. Puffed out and just what you picture is what I had. Now that area is just a lump. Sort of like a corset is sewn shut. 

First time I took a shower and touched at non-rectum area I almost passed out. A Nurse blew it off as I just hadn’t showered in awhile and the motions blah blah blah. No, I know my body and I pretty much almost passed out in the shower and had to sit on the stool that was provided really quick. The constant dreams I have of stupid stuff like taking a shit like a normal person or farting really mentally fucks with you. I get flutters in that area when I have gas in my pouch. If my pouch is super full it feels like I have to take a shit like I have a colon. A lot of ostomates say years out they have this and the only relief they get is from sitting on the toilet and pushing like you are taking a shit.

I am not sure what other people who experience war and have PTSD go through but my PTSD is really bad. My original PTSD was from the major car accident I had, reason my road rage is nuts and I drive like a rally car race driver in a saloooon. (Yes Top Gear addict here). I need to do yoga and rolfing. I think the yoga part makes me weirded out. My guts can be REALLY loud and my torso is tight and hurts so thinking of yoga just makes me cringe. I have been talking about Yoga for years now, losing a colon isn’t anything new.

Other than all that shit. I am going to the Rare disease conference and lobby on Capitol Hill. Signed up. I want to do the NIH open house but I get paid hourly and losing the days as is I want to take will break my wallet.
 
Tomorrow I am heading to Georgetown Lambardi center to meet with a breast oncologist. I have a new lump. YAY! I am hoping it is the same calcification that NYC cancer center swore was cancer and biopsied me twice and was just that, calcification from surgery when I chopped my boobs down ;) My disease doesn’t cause breast cancer and I am not in menopause so it isn’t likely it is cancer but since I am considered “high risk” they won’t take chances and got me in the next day to see a nurse practitioner.  Driving into DC is going to blow! Leaving at 7:30 am for a 8:45 appointment.
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27 Jan 2013
1 Comment

PTSD Rant

I think people that say “you look good for having cancer” should be dragged out and beaten with a bag of TPN. I just don’t get it. What does cancer look like? A bald head? No eyebrows? Guess what! Some of us don’t go through that. I also get annoyed when people say I am in remission. No asshole. I have an incurable disease that is a COLON CANCER DISEASE. Fucking annoying. I have no remission, ever.

This world needs to be educated because it is annoying that people don’t know shit. Today is share a rare disease story day so here is a rant instead.

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04 Jan 2013

Lobby Day : Rare Disease Legislative Advocates

I get to go this year! Yay for my shitty rare disease.

Lobby Day : Rare Disease Legislative Advocates.

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