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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My Cleveland Clinic Experience

I was eating dinner  in this horrible diner when I felt the severe depression and anxiety kick in. I got into my hotel room, crying at the door to get in with my broken key card. I felt like I was just going to collapse on the floor and have a hysterical crying fit. “this is my life” is all I could think. You want to punch your pouch and guts out of your body so bad but you can maybe just punch yourself a few times, shower then sit down to work on some website design for a client.

My day was hopeless today just when I felt full of hope on Tues after I saw Dr. Bo Shen (the pouch guru). My pouch looks perfect of course but why do I keep getting bacteria overgrowth? Even though I feel my trip was poorly planned by me and a waste of time and someone else’s cash who donated this trip to me since I am very poor. I can’t think this is wasted. What was done was at least more than others have done. I just need more doctors, once again. This disease has an ugly face and it shows to much.
I wanted to see if I could get my digestive tract under control and the pain. The pain is most likely from FAP or the BCIR itself since it can cause more mechanical issues than that Kpouch I was told. At least for people with FAP since well we are open to more cysts, desmoids and FAP causes a lot of pain to begin with. I was told to start taking Lactoluse Solution USP in combination with my usual antibiotic. It has helped my pouch actually work since it has a mild laxative. It is nice to have things digest and move along but I have to balance it with how much I take and my antibiotic. I might be on antibiotics for life. I do not have pouchitis but I have bacteria overgrowth (not the same thing). Most likely stemming from my stomach sleeve gastrectomy . Everyone who has weight loss surgery should have an upper and lower scope. It should be mandatory. I might one day face a whipple surgery that could kill me due to my stomach surgery. I am also more sick now that I lost a colon and most of the stomach.

I wrote a lot more in this section but it seems that WordPress has eaten my post so I will try to write what I had but maybe not as much since it was a lot and I am already burned out on typing.

I have to go back to See J. Cheng, the pain management doctor who is the best. Shen tried to kill the nerves in my ex-rectal area but it wasn’t enough so I need to block the nerves in the spinal area. Pain blockers. These are nothing new and I was told I should try it with my IC as well so maybe this is a sign. I have a ton of cysts in my buttock area where the rectum was removed that is causing me pain. Gardner’s Syndrome causes pain.

I met all walks of life. I sat next to a women who wore the same green gown as me and waited patiently with her caregiver/interpreter for her MRI as well. She had wide eyes and seemed genuinely interested in us loud Americans. With her legs crossed and face resting on her hand, I explored her hands since those tell age the best. She seemed like a young teenager but her hands show mid 50-60’s I think. I couldn’t tell much since most of her face was burned and covered with a head wrap. She intrigued me, I wanted to know her story.

Cleveland Clinic is full of all walks of life. The very wealthy Sheiks, the women in full Burkas, Muslims with full out fashion that might need of been policed 🙂 The doctors from Russia, Germany, France, India, China, etc. The science that was in those walls. The video installations and live Jazz music playing. My Funny Valentine was being performed while I went to walk over to the other CC building on campus that is the home of Colorectal and GI Disease . I met with Lisa in the Hereditary and Genetic Colon Cancer FAP registry. I learned about all of the different types of Colon Cancer Genetic diseases. And here I thought it was just LYNCH, MYH and FAP. The names I was told are a lot but I will look up the info and post. I think I heard over 10 different names and the list could have gone on. I felt like I knew so little after that alone was mentioned. They also have a program where you can donate your body at the CC. I can donate my body for FAP research and that is all I have ever wanted to do. I can’t just piece my organs out for life when research can save way more.

I didn’t get to experience Michael Simon’s restaurant but maybe when I go back I can. I am going to try to drive through and see other doctors on my path to leaving this dreadful part of the US, called Texas. I am sick here and miserable. I am by far, better not being here and that alone is priceless.

Syrup & Salt Food Blog for BCIR/Kpouches

Don’t forget unless I haven’t told anyone! To visit my food blog, where I post what I might be eating, or cooking. Things that work good for my BCIR and stubborn digestion. I hope after I go to Cleveland Clinic on the 25th they can give me tips on enzymes to help digest better. Tricky with half a stomach and no colon and a gassy pouch due to bacteria overgrowth.

So enough on rambling. The url is http://www.syrupandsalt.com  I just wanted to separate the stuff. Food and medical since I was posting some food items but I felt it was competing with my daily life in the world of FAP.

Deadlifts and Polyps

So I am determined to go have my stem cell treatment for my bladder in the next 12 months. Lately my bladder is running the show, once again and I really don’t want to have another hydro done. Stem cells cost 5k and even though I am so poor due to not working I am going to make it happen. I am looking for part time work now and even full time since I just need to do this. I need to have this last thing happen to see if the harmony in my insides can work. The chronic pain of bladder and pouch related issues is just becoming too much. Tired of my bladder running the show! Someone hire me! I am a great Art Director/Creative Director with mad skills!!

Other than that I told myself I can lift heavy with this pouch and I need to try. On my good days I go to the gym, even if it is to row for 1k meters and lift a few times. It is usually bladder issues, just like the usual, that make it hard to work out. If you don’t have IC it is very hard to ever explain what the chronic pain is like. And there are good days and ok days and really really bad days. Even on good days I still have a pain level of 5. It never goes away. The flares are just sometimes better than other days.

Anyway, I was stuck at 140 pound deadlift for 6 months now. I am 9 months post op almost and I went back to the gym 2 months post op even though I didn’t lift over 30 bs for a month or 2 later that that. So lets just say 6 months. I lifted 175 pounds last week! It was awesome and I was commented on how good my form is 😉 Anyway my PR is 225 pounds and my goal is to lift 400 this year so even if I get to 300 pounds I will be happy. My hernia might not grow, it is so small I can’t even feel or see it only a CT scan picked it up so I just make sure I am always lifting with my legs.

Back on Antibiotics once again. Only way I can get my pouch to not be angry. For the first time in over 2 decades I don’t have ONE FUCKING POLYP IN ME! I know it won’t last but I can enjoy this feeling for now. It came with a price. The pain I went through after the last upper scope to burn the rest of the polyp/tumor was insanely bad and I can’t imagine keep going through upper scopes. The gas it produces and the pain my pouch has is bad. Everything hurt even my finger nails. My ribs felt like they were going to break if you touched them and my joints felt like they were going to pop. This disease sucks but I have to think one day this pain will end. This is my belief in science and stem cells.

31 Daily Facts About IC | IC Awareness

31 Daily Facts About IC | IC Awareness.

 

IC Daily Fact #1 – Interstitial cystitis is not a rare condition. New epidemiological studies revealed that three to eight million women in the USA and one to four million men with IC may have symptoms of Interstitial Cystitis. That could be as many as one out of every 26 people in the USA. — Please post on your pages! We have a new daily fact for every day of the month to help us raise awareness for IC!

Sickness and weirdness

So I was in Florida for a week since the ticket was already paid for. I missed the GOP convention (insert sarcasm here). Remember! Girlfriends don’t let girlfriends vote for Romney!

I am so glad Isaac flirted with us. Made an excellent day at the beach. Image

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I miss living by the ocean. So back in Dallas aka the Culinary Wasteland. I have noticed things, things I told myself to pay close attention to while I was away. Not only did I want to see if less stressed=less issues but I wanted to observe the actual physical changes, if I had any. Since I always say I feel extra sick in Dallas. I am not sure if this is for all of Texas since I have only traveled to Austin and Houston with a colon.

I moved into a new place, a cheaper one since we would have been evicted if we stayed in the previous apartment. This loft has a lot of mold and dust. I have also developed an allergy to something here in Dallas. My eyes are on fire, I can’t breathe. I never had an allergy a day in my life prior to living here. In Florida I didn’t have to cover my stoma, not once! I just didn’t produce any water/mucus. Back in Dallas I have to change a paper towel all the time and it leaks out like a water faucet. It looks just like water even though it is mucus. I have to think this is an allergy thing. Nothing else makes sense. When I go to Cleveland Clinic on the 25th I will see how I am then. This only confirms I can’t live here. I have pain all over my body once again and just feel deathly ill. My pouch has issues in Florida, mainly I stopped really digesting anything and I was constipated a lot. So nothing is perfect but the pain wasn’t that bad there. Here I am in agony. I once again have no idea how to afford to leave but I can’t stay if it is actual torture.  My leg cramping is worse, my muscles all over are killing me. It actually physically hurts to live here. I don’t know what it is nor do I really care. All I know is I will go mad if I continue to endure it. My IC was very bad in Florida though. Maybe I will give Philly a good thought.

I am having my ablation to remove the remainder of this tumor/polyp in the big D then hopefully I can get a plan going. To broke to pay bills for the past 2 months so Monday our power goes. Maybe that will help motivate me! lol

Pouchitis

I thought I was bad in NY but I am way worse being back in Dallas. Cipro isn’t working so I guess I have to switch anti-biotics. It works for about a week then I have pouchitis again. Wonder if this is it for life because I am over it. The gas is so bad it puts so much pressure on my bladder I can’t hold anything. Once again my life revolves around the damn toilet. This town must just be toxic! I mean it is stupid Texas. Why did I ever move here to begin with? Major regrets.

I wish I kept my colon, I really do. Word to the wise, NEVER remove a body part unless you have to.

MOM

So I haven’t been updating since being here in NYC . Been a roller coaster and pretty hard at times. Haven’t been hydrated good enough at times since pissing in nYc is a bitch. I have to plan my days carefully around eating, drinking, draining and pissing. The days my bcir is good are days my bladder is irritated. It is a bitch I tell ya. Makes me wonder if I should just pack it up tomorrow and go back to Dallas where my car and amazing loft is but zilch for fucking jobs.

The limbo is the stressful part. Stay or go. I could write more but no internet where I am staying and pecking away on the iphone is a pain in the ass.

One thing I will never do is irrigate with NyC tap water. Few days of using bottled water and some antibiotics (Omnicef) seemed to clear up some inflammation/pouchitis up. Actually been off all meds for about 3 days. I take Bentyl only if spasms happen and 5mg at the most since 10mg makes me way to loopy. I went off the gabepenton (sp) as well but maybe try to go back on. Past week has been so up and down i am not sure what helps.

So I was told if output is to thick to use some milk of magnesia. Well let me tell you it cleans you out that is for sure but doesn’t smell like roses and I usually have no smell so it’s gross. Ugh

As long as you don’t substitute it for proper hydration. So today I had chicken salad and avocado with close to nothing to drink while walking all over Manhattan. Last time I do that shit. I need my kitchen and organic meats.

I went to Crossfit here at CF South Brooklyn and a trainer told me about Biercraft and there is a Paleo option on the board since a CFer runs the joint. Pretty excited I did an open WOD and got my push press up to 53 pounds. I know it isn’t my usual weight but felt good to clean and press something over 30 pounds to prevent hernia. I am not even messing with box jumps, running or deadlifts for another month or two. Push ups even hurt still so no burpees for this chick sadly 😦 Miss burpees.

I think Crossfit works for me because the workouts are short so my bladder or pouch can behave if under 30 minutes. If the WOD is short and intense I can try to ignore that my bladder feels like it might fall out.

Someone asked me what I am going to do with my chronic pain. All I can say is i wake up every day hoping it will be gone. What else can I do? Hopeful even though it’s not really reality.

Hurting

Chronic pain can really get you down. You can’t escape your own body even if you want to rip your insides out. Bladder pain is awful and haunts me daily. You have that hope that maybe the next day you will be magically cured. Well I am stubborn and so done with medicine. I just can’t take ANOTHER pill. So my pouchitis is gone and has been I think for over a week or 2. I was on Cipro for a UTI. I some how lucked out with bacteria/yeast infection and a UTI. But got this all under control. I never got infections from taking antibiotics before but I am off them for now. I am packing them all with me to go to NYC this week. This trip scares me so I went back on Gabapentin since I have not been on it since I had my BCIR. What was I thinking? Why did I wait so long to go back on it?! The way it blocks pain is a lifesaver. I am greatly reduced with my pouch/surgery pain so I will continue to suck down 300 mg a day. 

 

Johnny Cash does an amazing cover of Trent Reznor’s Hurt. It gives me goose bumps I can so relate