Life Punches You in the Face Sometimes: or Why I Didn't Get My Second Stem-Cell Placement
Long title, eh? I like that Peter Sellers shit.
So...this isn't going to be very satisfying to you, either - Dear Reader - but I have no fucking real idea as to why I didn't get my second stem-cell placement. About a week before the planned surgery, I got an ominous email from Jessica - the coordinator for the study - asking me if I would be available by phone the following day. It was ominous because we normally take care of most business by email, and her asking me for a direct phone call did not bode well. I told her that yes indeed I would and could call anytime.
I was so stunned by what she told me that I honestly cannot remember specifics. She said stuff about numbers and my not 100% stellar outcome last time, and something about the stock of the actual plugs that they would be coating with my cells being called into question (quality-wise) but bottom (ha!) line is that they cannot help me at this time.
I was/am fucking heartbroken. Not only was I totally ready for this surgery, but now I have to live with the Rockstar Piercing for...whenever? Forever? I've heard of patients having theirs in for over eight years. EIGHT FUCKING YEARS. Nopenopenopenopenope. This needs to be remedied. If I have to remind you, the seton was the way that they have been treating perianal abscesses since Hippocrates. If you suck at history, this is before Jesus Christ walked the fucking earth. Or water. Whatever you believe. What I do know is that Jesus Christ hasn't done a damn thing for the advancement of seton treatment, and I'm a little bitter. #thanksjesus
My psychiatrist has said that with the current political/medical climate (I will not blow my top, I will not wish death upon stupid politicians) that it's entirely likely that they lost funding for this part of the research. (If I had to take a WILD stab in the dark, is it because mouth breathers don't understand what stem-cell research is!? THESE ARE MY FUCKING STEM CELLS, HARVESTED FROM MY BELLY. Stem cells almost never come from "aborted fetuses" (just typing that makes me want to throw my computer" ...wanna know where there's a huge market for stem cells?!? YOUR PRECIOUS LITTLE BOY'S FORESKIN. STILL WANNA GET HIM CIRCUMCISED, YOU FUCKING MONSTER?!) ...I digress - Because it is a medical study, I'm not guaranteed treatment. I was just lucky the first time that I was included in the study group, even if it didn't go to plan exactly.
I've had several medical maladies since then (in addition to colonoscopy 8, which needs to be done yearly for a crohn's patient to check on their disease), and a lot of you know about my attempted helping of a tiny (unidentified) pinky rodent that I named Daisy that did pass away. The heat has always drained my reserves at least at a double if not triple rate, and I have just had absolutely nothing to give. I can't help but be depressed over the seemingly (now) endless chasm that I'm looking into that I will have this goddamned seton in my fucking ass, but I am really trying to be hopeful that they will quickly(ish - at the speed of government!) be able to come up with something, anything that will help me, that will heal this never ending open wound that I have been living with for literal years on end. I cannot remember the last time I went swimming, or took more than a quick bath that I didn't have to immediately clean the wound with surgery soap. I take only showers, and shaving my legs is a fucking nightmare.
It's not just the digestive disease. It's my mental shit that drags me down as well. I took a picture of all of my medications (included below) - the prescription ones at least, if I included all of my vitamins and over the counter medications we would need a drone shot, and I am not in possession of one of those bad boys. I took the liberty of removing all of the identifying marks, besides the actual names of the prescriptions - some help with my crohn's, some help with the constant nausea/vomiting, some are my mental drugs, some help with the migraines. Oh yeah, that reminds me that I didn't include my migraine rescue med (or either inhaler, one steroid, one albuterol) - ah well - there's enough medication there to freak you out. I'll only be 39 years old next month. I have Thursday Hurtsday every single Thursday of my life for the foreseeable future (which, for the record, is twice the amount of Humira that a "regular" patient takes - they only take it twice a month). I can see myself reducing the strength of some of these meds, but never coming off of them. These seem to be the core ones - they can increase dramatically; I don't happen to be on any (crohn's-related) steroids, or any antibiotic combinations at the moment, which is definitely fortunate.
I don't know what to say at this point. I'm in a holding pattern, and I hate it. I'm in a non-medical marijuana state. What I need people to do is get out and fucking vote. Vote for every single election, primaries, everything counts. It's bullshit that I'm a criminal, it's bullshit that I'm on so much medicine at a young age when I could come off of some of it (or severely limit it). Medical marijuana has been shown to help crohn's. So why the fuck does this draconian state still hold onto ideals that weren't even solidly proven a hundred years ago?
I'm frustrated. If you're not voting, don't let me find out about it because we're not friends. You're not "using your voice" by not voting. People are hurting because you won't take the time out of your day to be a decent citizen.
xoxoxoxxoxoxoxoxo
 |
| Or die mad - whatever makes you happy. |
So...this isn't going to be very satisfying to you, either - Dear Reader - but I have no fucking real idea as to why I didn't get my second stem-cell placement. About a week before the planned surgery, I got an ominous email from Jessica - the coordinator for the study - asking me if I would be available by phone the following day. It was ominous because we normally take care of most business by email, and her asking me for a direct phone call did not bode well. I told her that yes indeed I would and could call anytime.
I was so stunned by what she told me that I honestly cannot remember specifics. She said stuff about numbers and my not 100% stellar outcome last time, and something about the stock of the actual plugs that they would be coating with my cells being called into question (quality-wise) but bottom (ha!) line is that they cannot help me at this time.
 |
| What the actual fuck?! |
I was/am fucking heartbroken. Not only was I totally ready for this surgery, but now I have to live with the Rockstar Piercing for...whenever? Forever? I've heard of patients having theirs in for over eight years. EIGHT FUCKING YEARS. Nopenopenopenopenope. This needs to be remedied. If I have to remind you, the seton was the way that they have been treating perianal abscesses since Hippocrates. If you suck at history, this is before Jesus Christ walked the fucking earth. Or water. Whatever you believe. What I do know is that Jesus Christ hasn't done a damn thing for the advancement of seton treatment, and I'm a little bitter. #thanksjesus
My psychiatrist has said that with the current political/medical climate (I will not blow my top, I will not wish death upon stupid politicians) that it's entirely likely that they lost funding for this part of the research. (If I had to take a WILD stab in the dark, is it because mouth breathers don't understand what stem-cell research is!? THESE ARE MY FUCKING STEM CELLS, HARVESTED FROM MY BELLY. Stem cells almost never come from "aborted fetuses" (just typing that makes me want to throw my computer" ...wanna know where there's a huge market for stem cells?!? YOUR PRECIOUS LITTLE BOY'S FORESKIN. STILL WANNA GET HIM CIRCUMCISED, YOU FUCKING MONSTER?!) ...I digress - Because it is a medical study, I'm not guaranteed treatment. I was just lucky the first time that I was included in the study group, even if it didn't go to plan exactly.
 |
| I'm not going to show you a picture of baby foreskin because I'm not a FUCKING MONSTER. Instead, here's a puppy with a heart-shaped nose. You're welcome |
I've had several medical maladies since then (in addition to colonoscopy 8, which needs to be done yearly for a crohn's patient to check on their disease), and a lot of you know about my attempted helping of a tiny (unidentified) pinky rodent that I named Daisy that did pass away. The heat has always drained my reserves at least at a double if not triple rate, and I have just had absolutely nothing to give. I can't help but be depressed over the seemingly (now) endless chasm that I'm looking into that I will have this goddamned seton in my fucking ass, but I am really trying to be hopeful that they will quickly(ish - at the speed of government!) be able to come up with something, anything that will help me, that will heal this never ending open wound that I have been living with for literal years on end. I cannot remember the last time I went swimming, or took more than a quick bath that I didn't have to immediately clean the wound with surgery soap. I take only showers, and shaving my legs is a fucking nightmare.
 |
| It really is a problem. I miss swimming, bro. |
It's not just the digestive disease. It's my mental shit that drags me down as well. I took a picture of all of my medications (included below) - the prescription ones at least, if I included all of my vitamins and over the counter medications we would need a drone shot, and I am not in possession of one of those bad boys. I took the liberty of removing all of the identifying marks, besides the actual names of the prescriptions - some help with my crohn's, some help with the constant nausea/vomiting, some are my mental drugs, some help with the migraines. Oh yeah, that reminds me that I didn't include my migraine rescue med (or either inhaler, one steroid, one albuterol) - ah well - there's enough medication there to freak you out. I'll only be 39 years old next month. I have Thursday Hurtsday every single Thursday of my life for the foreseeable future (which, for the record, is twice the amount of Humira that a "regular" patient takes - they only take it twice a month). I can see myself reducing the strength of some of these meds, but never coming off of them. These seem to be the core ones - they can increase dramatically; I don't happen to be on any (crohn's-related) steroids, or any antibiotic combinations at the moment, which is definitely fortunate.
I don't know what to say at this point. I'm in a holding pattern, and I hate it. I'm in a non-medical marijuana state. What I need people to do is get out and fucking vote. Vote for every single election, primaries, everything counts. It's bullshit that I'm a criminal, it's bullshit that I'm on so much medicine at a young age when I could come off of some of it (or severely limit it). Medical marijuana has been shown to help crohn's. So why the fuck does this draconian state still hold onto ideals that weren't even solidly proven a hundred years ago?
I'm frustrated. If you're not voting, don't let me find out about it because we're not friends. You're not "using your voice" by not voting. People are hurting because you won't take the time out of your day to be a decent citizen.
 |
| Do you know how much of this could be taken care of naturally, if I wasn't branded a fucking criminal?! |
xoxoxoxxoxoxoxoxo
Jill the Medicated.
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