26fe Brand
I have my kickstarter page going like promised! Excited to be able to release my own designs without a douche bag stealing shit.
http://www.kickstarter.com/projects/764279854/26fe-the-element-of-strength
You want to put that where?
A journey into IC and Familial Adenomatous Polyposis (FAP). 2 seperate diseases of the bladder and colon.
Author Archive
Feature Guest Blogger: Tips on applying for SSDI as a younger adult.
Applying for Social Security Disability Benefits as a Younger Adult
Having a disabling condition or illness can impact every aspect of a person’s life. There are more obvious complications—like pain, medication, and doctor’s appointments—and then there are other, less expected obstacles. Among these: Financial instability.
When a person is diagnosed with a serious illness, they may not immediately think about medical expenses or even how their condition will affect their ability to work. They may soon find that their health has left them unable to pay their bills and unable to earn a living. In times like these, it becomes necessary to seek financial assistance.
The Social Security Administration (SSA) recognizes that certain conditions make it impossible to work and offers assistance in the form of Social Security Disability benefits. Although people commonly assume that disability benefits are for older individuals, a person can become disabled, and therefore unable to work, at any point during their lifetime.
The following blog post contains helpful information specifically for individuals in their 20’s and 30’s who are in need of disability benefits and aren’t sure where to begin the process.
Disability Programs and Age
There are very few age restrictions that govern the Social Security Disability program. That being said, age does in fact play a large role in determining whether an individual qualifies for disability benefits. To understand why an applicant’s age is significant, you must first understand the two different Social Security Disability programs.
It is important to note that to qualify for any type of disability benefits you must first meet the SSA’s definition of disability. Essentially this means that you must be able to prove that your condition makes it impossible for you to do any type of work and that your condition will last at least a year. In addition to meeting these criteria, each disability program has its own set of technical guidelines.
The first program, Social Security Disability Insurance (SSDI) is funded by the Social Security taxes that most workers pay. Eligibility for this program is determined by a person’s work history. To qualify, you must have earned a certain number of what the SSA refers to as work credits. If you are in your 20’s or 30’s, it is possible that you have not been in the work force long enough to qualify for SSDI benefits. Learn more about work credits here: http://www.disability-benefits-help.org/glossary/work-credits.
If you have not earned enough work credits to qualify for SSDI benefits, you may find that the second program—Supplemental Security Income (SSI)—is a better fit for your needs. SSI is a needs-based program. This means that your eligibility is based on low income rather than work history. Learn more about the specific SSI requirements here: http://www.disability-benefits-help.org/glossary/supplemental-security-income-ssi.
Age and Retraining
When the SSA evaluates your application for disability benefits, they will use the information you provide to determine whether or not you are able to work. They will also decide whether or not you are able to learn how to do a different job—more specifically, a job that your condition does not interfere with. Typically, the SSA considers younger individuals more able to adapt to a new type of work than older individuals.
How to Improve Your Chances of Being Awarded Benefits
If you want to increase your chances of being awarded Social Security Disability benefits at a younger age, there are a few steps you can take.
- Know the differences between the programs and be prepared to apply for the program or programs best suited to your needs.
- Be sure to provide adequate medical documentation of your condition and symptoms.
- Work with a medical professional. A medical professional who is familiar with your condition will be able to provide a written statement to support your application. These statements are given quite a bit of weight when the SSA evaluates your application.
- Consider working with a disability attorney. A disability attorney will be very familiar with the application process and will be able to help you gather all the information you will need in order to be approved.
Applying for Disability Benefits
Once you have decided to begin the application process, you can do so on the SSA’s website or in person at your local Social Security office. You will be required to fill out several forms including the Adult Disability Checklist, the Adult Disability Application and the Adult Disability Report. You will also be required to sign an Authorization to Disclose Medical Information form. This gives the SSA the authorization to gather medical evidence to help support your disability claim.
While it can be more difficult for an individual in their 20’s or 30’s to qualify for Social Security Disability benefits, it is not by any means impossible. Taking the time to research the process and collect medical evidence will only increase your chances of approval. Remember that although applying for disability benefits may seem overwhelming, once you are approved, the experience will ultimately be worth it.
For further information visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.
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.
Ditch the bag
So a friend of a friend is ditching the bag and getting a BCIR. Good for her! Hope she has a wonderful outcome.
Since my last rant I must clarify the surgeon, Dr Rhenke is brilliant and talented and can’t imagine other surgeons operating on me BUT the program itself and the bitch Susan Kay that is not helping their cause, is the problem. Some admin issues as well but just had to clarify that. 
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.
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.
BCIR vs. Kpouch – Pouchitis and C.diff. The truth as I know it today.
Lying. Sometimes I don’t give two shits who lies because everyone does it. We are human. What I do not forgive or forget is when someone lies to you about something so serious about your health and well being.
you research your heart out when you get diagnosed, with anything, not just cancer. You have such a small window to make a decision with every minute that passes time removed from your life, or possibly being to late. People telling you “Act now” you are already weird for being so old with this disease and not a stage 3 or 4. Or that nobody knows if the cancer is past a stage 2 until they remove your colon. FAP is scary enough but I always needed to understand what was happening and make the most informed decision, even if you die before it happens.
I knew I wasn’t going to live with an ostomy bag. I even changed my paperwork and had the surgeon sign it. NO PERMANENT ILEOSTOMY ALLOWED IF BCIR CAN NOT BE MADE. I was picking dying of cancer instead. I don’t care what people say to this, this is my body, I am allowed to do what the hell I want with it. I suffered a great deal this year, trying to figure out why everyone with a continent ileostomy is doing so fucking great compared to me. I have been to the Cleveland Clinic 2 times, almost going bankrupt in the process. I have been to countless doctors in Dallas at Baylor and Medical City. I counted on every word my surgeon’s office said to me, trying to make sense of this madness. I asked my husband to kill me flat out a few time in crying fits. I have lived some very dark fucking times from a torture device that has been inside me. But it gets better over time when the body gets used to a new organ that is basically a blockage created. I read people’s blogs and message board posts saying how over the years it gets better. People who love this thing. I could not relate, not yet at least. But the times I wore a leg bag with a slipped valve I knew I had to make this work, no way am I shitting outside of my body in a bag, ever.
I booked flights to the Palms for pouch scopes that never happend. 2 times. Once my father bought me a ticket with his last Sky Miles, the second my grandmother (who has paid for most of my travels to hospitals) paid my flight. The first time, if you recall I never saw anyone and the GI took the day off the next day to go fucking golfing. I never had pain management visit me. I was told it would be maybe 2-3 days when I had to get back on a flight 4 hours away in South Florida from St Pete to go home. I had no money to rebook or change a date. I was broke, poor and sick. I had no job, no way to pay bills and beyond poverty. I was still on my surgeon’s side and what everyone told me at the palms. “You have pouchitis and possible ulcers, get scoped somewhere and send us results.” I had 2 pouch scopes and everything was stellar. People with FAP don’t even get pouchitis so even the Palms were trying to wrap their heads around this.” Oh maybe the lighting is weird on the photos and we just can’t see what is going on”. I just kept going along with this all, I mean they were trying to figure my case out, right?! WRONG!
Fast forward to the worst I have been in my life. Drove 5.5 hours to Cleveland Clinic to see one of the best GIs, Bo Shen. The man has scoped over 200 BCIRS, that alone has to tell you something. He explained to me that the extreme violent gas and movement I have is from the small bowel that is wrapped around the valve. The one main thing that makes the BCIR different than that Kpouch they preform. And here It thought this would save me from future surgery, not having a slipped valve, what the BCIR is supposed to rule out by adding this step. That one thing is making my life worse. And who has time for more surgery to reconstruct a valve? With FAP every time we get cut open we risk having desmoids form, desmoids kill, they are almost worse than cancer. One reason I went with the surgeon I picked vs. the ones in Dallas that wanted this to be a 2-3 step procedure when a continent ileostomy in general should be one. I wanted one surgery and move the fuck on with my life.
I was scoped this past friday by Bo Shen after my guts were liquifying everything I ate, gas felt like it was ripping my body apart, intubating felt like intense cramps and acid burning my tissue, organs and muscle. I was losing maybe 1 oz of blood a day. After hearing the fucking word from the Palms of Pasedena about fucking pouchitis one more god damn time. He saw me 5 hrs after my scope at my follow up and said. There is NOTHING wrong with the pouch. You never had pouchitiis and if anyone tells you you do, they are wrong. You have FAP, not Chron’s or UC, those people get pouchitis. So with that being said I shit in a cup and off it went for C.diff testing and me on my way home. Thinking I had to schedule surgery to remove this pouch, I could not live this way. On my way home around 6pm on Saturday I got an email saying ” You know what Vanessa, it is POSITIVE!” I tested positive for C. difficile. A deadly infection that has killed over 30k people a year and is an epidemic right now. But how does one get c.diff when on antibiotics? I did my research to find out the 3 antibiotics given this whole year for this fucking “pouchitis” cause C.diff.
Now here comes the shit. Something so rare with no colon I was told by her and so rare to ever get on antibiotics about 9 months ago when they were trying to figure out what was wrong with me. A girl, who had surgery when I did, and has become a friend. Has been just as sick, actually worse since she has UC. She was about to be put on Cancer meds to see it would reboot her system, her doctors saying she now had Chron’s and mis diagnosed they were just as puzzled. After her Cleveland Clinic appointment, just 4 days after me, was also diagnoed with C.diff. “STOP TAKING CIPRO ASAP” her email said. The drugs we are fed are killing us basically.
My mother after hearing this got into her political, advocate way. And called Susan Kay at the Palms. My mom speaks loud only due to being on a cell phone. My mother never yells. Far to educated and refined, with 2 masters degrees and from Chicago We are an upper class family, we debate loudly, but don’t cross us we will not tolerate your shit. She hung up on my mother the minute my mom asked her is she thought she was at fault for my well being. After my mother politely called her back and said “The call must have dropped” (knowing she hung up on her after being yelled at for asking a simple question) She yelled some more, my mother asked her to calm her voice there was no need to get heated. Susan Kay said I wanted them to change their policy and that wasn’t happening. They once tested for C.Diff but stopped since studies showed it isn’t common to get when a colon is gone. Bulllshit. Cleveland Clinic sees this all the time, they also see C.diff form in just the valve. What medical sham is this shit ? No wonder they have no medical journals. The CC doesn’t even consider the BCIR “real”. And now I know why. The Palms of Pasedena is a for profit hospital. My aunt just left the ER for something, not the point, point is on her discharge paper it said TESTED FOR C.DIFF. She had nothing wrong with her bowels, it is the hospitals responsibility to test since that is where it breeds.
We are an upper class family, we debate loudly, but don’t cross us we will not tolerate your shit. She hung up on my mother the minute my mom asked her is she thought she was at fault for my well being. After my mother politely called her back and said “The call must have dropped” (knowing she hung up on her after being yelled at for asking a simple question) She yelled some more, my mother asked her to calm her voice there was no need to get heated. Susan Kay said I wanted them to change their policy and that wasn’t happening. They once tested for C.Diff but stopped since studies showed it isn’t common to get when a colon is gone. Bulllshit. Cleveland Clinic sees this all the time, they also see C.diff form in just the valve. What medical sham is this shit ? No wonder they have no medical journals. The CC doesn’t even consider the BCIR “real”. And now I know why. The Palms of Pasedena is a for profit hospital. My aunt just left the ER for something, not the point, point is on her discharge paper it said TESTED FOR C.DIFF. She had nothing wrong with her bowels, it is the hospitals responsibility to test since that is where it breeds.I work in advertisement so I get that it goes a long way now. What I don’t get is how someone can fuck up repeatedly for the sake of other’s health and possibly kill them. ” In retrospect I should have ordered a C.diff test for Vanessa and ashamed of this hospital the 2 times she was supposed to be seen” she finally admitted. Susan Kay I doubt has any real medical experience besides being a spokeswoman for the BCIR. I now have to look into another surgery, at Cleveland Clinic to possibly get a new valve, to improve my quality of life. I will end this here. But always fight your doctors, it is your life and happiness at hand.
C.diff
Things I have heard or all I really knew ARE WRONG!
With my hell of a god damn year. And constant roation of Cipro, Omnicef and the latest Suprax. How would anyone with no colon and on antbiotics get C.Diff. Yes that is what I was told. Then another GI I had said if I never had C.diff with a colon then it would be highly unlikely I would have it now. ERRR WRONG! All bullshit. Those 3 antibiotics cause Cdiff to grow basically. I mentioned this to Bo Shen at Cleveland Clinic (#4 GI in the world I think he ranks) and he laughed, said he sees it a lot , people with no colons having it and sometimes just the valve itself having cdiff. So I start oral liquid Vanco once I get a compound pharmacy to make it, CVS is figuring that out for me. And hopefully this hell I have had forEVER gets under control.
I never had pouchitis but yet I have been swallowing antibiotics for it. If scopes continue to say you are fine then demand shit to get done the right way.
Getting my rear in gear or shall I say guts in check
So first comes first :Get your rear in gear: made me their face of blue for March 9th. I knew it was coming up since I talked to them back and forth for a few weeks prior. Anyway, here is the link. Not much is different from my intro to this blog with some added notes. http://www.getyourrearingearblog.com/featured-articles/faces-of-blue-vanessa-truog
I feel like reading that makes it sound easy. Like I got the bad stuff out and I am good to go. The hell is what you go through AFTER cancer. Cancer was the easy part! Bone tumors, polyps, more polyps, more tumors, more dysplasia, cysts, desmoids, bleeding guts, pouchitis, cdiff, you name it, pure hell.
I am still sick. I will be really shocked if my iron and blood is normal with an upcoming tests Friday at Cleveland Clinic. I bleed so much now and my pouch feels like it is battery acid. My stomach cramps are really bad. Shen thinks I have cdiff, I hope someone sees something because I am very sick and I am tired of doctors not helping me whenever I have an issue because everything “looks” normal. I am doubled over in pain, my valve twists and turns and it feels like acid is literally burning the inside of my guts. It smells like a small child died inside me and I have blood in my tube and running down my legs when I take a shit. I even have pools of blood and mucus in my stoma covers. OBVIOUSLY there is something wrong here.
In case it was cdiff I took some flagyl for a day then thought I can’t do this, I can’t mask what I have so this scope shows clean again so decided to not take any more. I refuse to leave Cleveland Clinic until I am diagnosed, fixed and don’t feel like the walking dead. I just hope it is nothing so severe they say my pouch has to go. I can’t imagine having another one made. I can’t afford the time off or do I have the mental stability to go through another 30 day hospital stay with 6 months to a year to get back on my feet.
Maybe I have cancer, but wouldn’t my blood work show that ? One would assume.
Also this time change shit. I bitch about it every year but this really needs to fucking stop. I am dead tired, I sleep maybe 4-5 hours a night. It doesn’t help being sick. I doubt stupid politicians give a fuck that it wrecks lives.
I can’t work out. I tried to do a snatch in my living room thinking I can do the CF 13.1 open. Yea the bar almost fell on my head, no energy or strength. I did maybe 10 33 pound push presses and called it a day. My arms and body hurt everywhere. My spine feels like my intestines grew thousand of rose thorns and leeched onto my rib cage, lungs, kidney, spine and soft tissue.
2.5 more days of work then some magic in Cleveland hopefully happens. I don’t really count the days them selves since the road trip alone means I am almost there. It is so hard to work when life is this rough. But ya got to pay bills!
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.
