Crohn's & Domestic Violence Fund
The story I would like to share is very important to me and to others, as it could benefit others dealing with the same issues, by giving them courage to fight for life and by letting them know they are NOT alone in their battles. I have Severe Crohn's Disease of the Small Bowel (which does travel around throughout other areas of the digestive system without warning), with Complications, such as Superior Mesenteric Artery Syndrome, which I will explain later on, as to how rare and serious it is and how it almost killed me in 2016. I have had 7 colonoscopies and 7 endoscopies, not necessarily together. The number may be more for one or the other, but I can't even remember anymore, due to all of the procedures I have had in the last 14 years, for other conditions as well. I had a CAPSULE ENDOSCOPY (which was very interesting, actually), where you swallow a horse-pill-sized camera that snaps tens of thousands of photos over several hours & transmits them wirelessly to a purse-like thing you carry around. I have had PET Scans, Hepatobiliary Scans, CT Scans, MRI's. EVERYTHING. The Crohn's has gotten so bad now, that I have to have a $22,000.00+ infusion called Entyvio, every 2 months to stay alive, and that doesn't even include hospital services, iron infusions, drugs they inject to prep me, etc.
I was having sharp abdominal pain before I moved to Green Bay to attend UWGB for more opportunities available that the community colleges didn't offer, and my mom had to come pick me up from work (I was a legal secretary at that time, and then a legal office manager) and took me straight to the ER. I had NEVER had any pain that severe in my whole life.That's how bad the pain was. Doctors suspected I had endometriosis, so they did surgery on that and found endometriosis. After the surgery, the endometriosis came back, but my stomach was still very bad, so I had started to see gastroenterologists whom THEN diagnosed me with Crohn's Disease, in 2004, even though I believe I had it since my teens. (I was always sensitive to lactose in most dairy products, and sensitive to most gluten products.) I used to get diarrhea and gas painfully, since a young age. The Crohn's just keeps worsening with age. If it weren't for the endometriosis surgery, maybe the Crohn's would not have been found. Crohn's disease caused me to drop out of UWGB, even though I tried SO hard to "SUFFER THROUGH IT" and get through the semester. So I ended up dropping out the fall semester of 2004 AND the winter semester of 2005. I was devastated. This disease has robbed the entire decade of my 20's. I was a High-Honor-Roll student, an A college student, etc. I wanted to find jobs other than working at the same places all the other kids in my school were working, so I am always an ambitious person. As a result of all of this, I feel like I FAILED at reaching MY life goals. I even had most of them written down. I know for sure I would've been successful. Unfortunately, I was dealt a very bad hand (these types of diseases also run in my family), and there is LITERALLY *NOTHING* you can do when you are THAT sick, to fix yourself, BY yourself.
I have some other very serious medical conditions, most of which are in the mid-section area of my body. Here are some other diagnoses I have:
--Lumbarization of the First Sacral Vertebra (an extra arch in the low back that causes me severe pain, & it is a genetic defect)
--Absolute Anemia and Iron-Deficiency Anemia (due to the Crohn's and also heavy periods/menorraghia)
--S.I. (Sacro-ileac) Joint Inflammation: I have had many steroidal epidural injections in my back and also had performed on me an RFNA [Radio Frequency Nerve Ablation], where the nerve endings are literally burned off, eventually growing back later on. This helped only a little of the middle back pain.
--Broken tailbone for several years: Doctors keep saying they can't do anything about it. I can't do sit-ups properly or sit in certain positions as a result.
--Endometriosis: I had 4 surgeries for it, and it kept coming back, and then they put me through Hell and back when I was only **20** years old, by putting me on the nightmare chemical Lupron, to induce a 6-month-long bout of induced menopause. I knew the experiences of menopause before my own mother did. This is highly depressing. And....even AFTER the Lupron, which I was promised that it was very successful, the Endometriosis came back anyway. I may get a hysterectomy soon. It keeps coming back, and it is a miracle that I have my son, who is now 9 years old. He is my reason for going on and fighting through everything.
--Chronic Pain in the left leg groin & hip area that seems to be a mystery to every doctor and specialist so far. I MUST get this addressed. I have so much on my plate right now, and I am very overwhelmed and often don't know where to start.
--Interstitial Cystitis: I had a Cystoscopy with Hydrodistention and was put on Elmiron, another insanely expensive medication. It did not help my pelvic pain even though I do have some issues with my bladder still. They also had me on a series of RIMSO treatments. Rimso-50 (dimethyl sulfoxide, also called DMSO) gets pumped into a catheter into your bladder, and then your whole body smells and even tastes (in your mouth) like garlic, VERY badly to the point of embarrassment, for several hours after the treatment. I had those every week for 6 weeks. That still did NOT help. The urologist told me that my bladder basically looks like I have "little pot-holes in it, all over".
--Hypothyroidism: This does NOT help when you are already EXHAUSTED from running back and forth to the bathroom or dealing with drowsiness that comes along with many of the medications I have to take for my Crohn's Disease.
And the list goes on. Other diagnoses came about very badly after the devastation that the Crohn's has caused.
I have been on so many different medications for Crohn's Disease that I lost count. I now have a gastroenterologist that I have known for 12 years. I had started out on corticosteroids, then sulfa drugs, then Asacol (and yes, my hair fell out in the shower and wherever, and it continues to do so because of the biologic infusions now. My body has also not been "right" since that artificial menopause induced by the Lupron. I lost 3.2% of my bone mass, have broken bones in the fingers on both hands, AND lost an entire inch of height. I AM ONLY 34 YEARS OLD.), then Humira (a VERY expensive biologic medication...the starter pack alone cost around $14,000.00), which caused me to have giant baseball-sized bruises on my back for no reason one day when I woke up. It was also making me feel "weird". So I had to stop the Humira. Remicade would've been too hard on me, so we didn't do that. THEN...my gastroenterologist MOVED, and I was devastated, feeling hopeless that I would never find someone in this medical profession (gastroenterology) that cared so much to try ALMOST EVERYTHING to help me. Thank GOD he came back, though, to the area. One day, I had a feeling & thought to myself, "I'm going to see if he's back in town...maybe that was a temporary thing...I NEED someone to continue treatment on me for Crohn's".........My instincts were RIGHT! It was a miracle.
However, I hit a VERY bad Crohn's episode starting in the fall of 2016. From September to December of 2016, I had lost **50** pounds. I lost so much weight and became so dehydrated because I was puking everything up before it could even get TO the diarrhea point of Crohn's (and MY Crohn's can alternate between diarrhea and constipation. Everyone is different.) I had to have an emergency procedure the day after Christmas, so 12/26/16, and I was ordered immediate fluids and then the newer infusion called Entyvio. I told my gastroenterologist that I was willing to try just about anything at that point. He explained to me that the reason I could not even DRINK anything was that my Mesenteric Artery COLLAPSED onto my digestive organs, causing it to be closed! That terrified me. Prior to this, there were SEVERAL appointments where I cried and cried, telling him I wish he could just remove my WHOLE innards area. He is trying all these treatments first before surgery, because he is worried about the Crohn's moving to the spot next to whatever would be resected, and he told me he is also worried about something called "Short-Gut Syndrome". I was also ordered to have Iron......liquid black iron....pumped into my veins. The caustic nature of the iron mixing with the Entyvio caused the veins in my left arm (after the first infusion) to bulge ALL the way up to my ARMPIT like Bane from Batman. It was so painful that the VISIBLY bulging veins hurt for at LEAST 3 weeks. So now I have to have TWO IV's....ONE IN EACH ARM (as per one of my photos), if the doctor orders an iron push or an iron bag.
Just when I was already down, I got kicked down AGAIN, because I had just found out during that downward spiral at the end of 2016, that my husband cheated on me. Later on, in March of 2017, I was yet again a victim of domestic abuse. My now-ex-husband ended up impregnating another woman who just happens to have my same first name, after he went to jail. I had to call the police on him in 2009, on Father's Day, unfortunately, due to domestic abuse, and I have been in frequent contact with the local domestic violence shelter. He wanted a divorce from me (even though he is an undocumented immigrant....and I was BORN here), just because I called the police on him. I forgave him for the "sexting" pictures he and his new supervisor were texting back and forth at the end of 2016, even though I had a file folder with all the phone records and the names of whichever papers I needed in order to FILE for divorce in order to start the process. So, I forgave him, and then, BOOM, he impregnated another woman, WHILE WE WERE STILL MARRIED. The baby was born the day before Valentine's Day, 2018, and our final divorce trial was on March 12th, 2018. I never saw this coming. I ended up finding the sonogram of the supervisor's child and handing it to him before he even knew about it. This girl is OBSESSED with trying to ruin my life. I quietly warned her, at the place of employment (where both of them and other employees there, for years, slandered me about my medical situation and said things to other employees that were not true), and she still did not care. She knows what it's like to be cheated on, so how dare someone "steal", as she said, a married man from a sick woman who share a son together. She is completely capable of working, yet she bounced from man to man, got her car re-poed, lost her house she was renting or whatever it was, says things to my son regarding what my ex-husband is going to do in court regarding custody and placement, while my ex-husband is NOT LISTENING (INTENTIONALLY), making promises TO my son, when she is a complete stranger to all of us. The level of immaturity here is nearly unbearable, and it is DEFINITELY NOT HELPING MY MEDICAL SITUATION. This is the type of person who ENJOYS to see other people suffer. She even bragged about it. I highly doubt she would put up with ANY of this if it were the other way around. I even had decided, WHILE SICK, to CONTACT HER, as a third-party contact because my ex-husband and I are not to have contact, so that we can try to get some co-parenting messages across as I have no one else to be that third-party contact. I realized, that, given our significant age difference and maturity level, I HAD to contact her and just be the bigger person for the sake of my son. Unfortunately, on Friday, 5/25/18, that went downhill when I got something in the mail from my ex-husband's attorney. She is manipulative, controlling, calls my ex-husband a "cheap-ass mother****er" in front of my son, tells my ex-husband what to do, when to do it, demands that he do things and buy her certain things (she even admitted this to me in a phone call, where she said that she just tells him she will threaten to him that she will take their newborn baby away to Montana if he doesn't comply with her demands), etc. She says he has more freedom now than ever before. She is a nightmare on wheels. I never knew her. I don't LOOK for confrontation. She came into OUR lives literally OUT OF NOWHERE, and then she had the gall to tell me WHY my ex-husband divorced me. I already KNOW the reasons. ONE of the reasons HE left me for her is that he demanded sex AT LEAST 3 times per week. He started to get violent because I said it hurt really bad and that I couldn't be intimate like I used to because of my pain and illness...he even tried to hold me down, telling me, "shhhh, shhh, I'm going to do this very gently...shhh, shhh". When I started to cry after he wasn't listening to "NOOO, PLEASE, NOOOO", he stomped off into a rage, and I was terrified. This was a common ocurrence. And when he was drunk, it was a nightmare. If I even TRIED to defend myself in any way, or even TRY to push back, I know that if I tried with full force, he would knock me out and instantly kill me. He is EXTREMELY strong. Even though we were together in 2008 but married in 2014, he KNEW the level of my illness, and he chose to marry me anyway. This is all so SINISTER, that I simply cannot even.
SO MUCH FOR **IN SICKNESS AND IN HEALTH**.
I usually keep to myself. My close friends all moved far away after high school. Most of my family is in Buffalo, NY, and no family has any means of helping me. And my ex-husband left me and my son high and dry. I feel like he took me out like yesterday's trash. He kicked me while I was already down. I am absolutely devastated, as this is FRESH in my mind.
I just got a bill in the mail yesterday for $22,046.73. Apparently my ex-husband cancelled the health insurance I was on, and even though I applied for Medicaid/BadgerCare, the infusion I had in March was billed to the health insurance company from my ex-husband's employer. I have to call to find out if they can back-date it, but first I need to find out if this type of plan will even COVER the Entyvio, and if I have to change my HMO or not. I MUST have a medical plan that will cover my Entyvio but ALSO cover my 9-year-old son's Pediatric Ophthalmology appointments, surgeries, and glasses. He has Accomodative Esotropia.
Even though I bought a brand new vehicle in 2003, with my OWN credit when I was only 19 (because I WAS a great student AND a great worker), by 2006, my credit report was 40 pages long due to this whole medical nightmare. (I still have the vehicle, by the way, and it has only 85,000 miles on it. I take care of it and am appreciative to have some means of transportation. The lack of mileage is because I cannot hold a job outside the house due to me needing to be by a bathroom all the time. It is difficult for most employers to understand this, and my attendance is an issue due to this horrible disease. It is so embarrassing to have to explain this to a new employer. Then I worry that THEY think I won't last, making my own stress and illness even worse.)
By now, I believe that my credit report has reached 100 pages. I have been too stressed out, sick, and afraid to even have one sent to me to look at. I keep getting medical bills in the mail from the deductibles that my husband did not understand that you HAVE to pay in this country when you get health insurance, and other bills that we could not pay. I have mostly medical, ambulance, rescue squad, hospital, and doctor bills, along with a $15,000.00 school loan that went to waste all because of this nightmare. I am trying to find an attorney who will help me file for disability, because now I definitely have more than enough proof to obtain it. If I had every single medical bill and record in my possession, they would fill my entire garage. I'm hitting a few obstacles with one attorney so far. I may not qualify for SSD because I have not worked since 2008. The other aspects are my age, being so young. But at this point, my gastroenterologist would say that this is SEVERE. You have to have your health insurance PRE-AUTHORIZE the Entyvio before you can have it. So those biologics are used only in severe cases.
****Since December 23rd, 2008, I stayed home to take care of my son.**** My ex-husband never appreciated this, while he was out drinking, at bars, coming home drunk, causing disturbances, making me worry all night long, getting a DUI, etc. All he could tell me was that I was useless because I couldn't work, I am a "grandma", etc.
Prior to having my son, I had a miscarriage. I was told I would not be able to have children because of the endometriosis scarring and the medical problems I have. I was off birth control for a year and 3 months without being able to get pregnant, so I just thought that the doctors were right and that I couldn't. I have side effects with almost any birth control medication, so I stopped taking it. Then I had my son. I had a complicated pregnancy, needed to see a Perinatologist 3 times a week, was on bed-rest, was HOMELESS and pregnant (thanks to my ex-husband, until the LAST month of my pregnancy), and my son was not growing properly in the womb.....because of MY stupid body and its problems. Thankfully he grew very well once he was born. I feel a tremendous guilt and sadness because I cannot have any more children. I wanted Aidan to have just ONE sibling...especially a sister. Well, now, thanks to my ex-husband's infidelity, he has a half-sister. That breaks my heart even worse, even though I'm also seeing how much my son loves his half-sister, and I am trying to keep the peace, despite what has been done to ME, while I was sick on my couch, suffering, daily & nightly, while my husband was cheating on me. So I would NEVER be popping out children left and right, knowing that they would have to endure being inside MY womb again. I am not one of those people who just wants to live off the welfare and keeps having children for that reason.
****I am very thankful, however, that one positive thing came out of my illness....I was able to stay home with my son for all these years, teaching him from a young age, and now he is a year advanced in school (even though I won't have him tested into a higher grade until maybe middle school, so he can develop more, socially) and reads at a middle grade reading level even though he is in 3rd grade.**** My son has been with me through thick and thin. He has opened the door for rescue squads to get me because I was puking and having diarrhea on my toilet all at the same time, SEVERAL times. He got to ride in ambulances AND even firetrucks. This happened since he was a baby. After I had him, my Crohn's got worse, and so did the pelvic/groin and back pain. That's when I also developed Hypothyroidism. (The same thing happened to my mom after she had my younger brother.) My son will unfortunately never forget the strife he has seen me deal with, and how I try to cry only when he is in bed, but sometimes I can't help it, like tonight. "It's okay, Mommy." He said, "This disease is NOT your fault." He is a miracle........and an angel.
So, with everything happening and medical bills piling up, I am in dire straits, and my son and I need help financially, right away.
****It took me SO long to find a place with a yard for my son to play in (the last place we lived in was a pocket-ghetto nightmare, gunshots flying, people getting busted for heroin and prostitution rings, canine units being there with police, while my son and I were walking home, etc.), somewhere that was safer, and somewhere that we could call "HOME". It was horrible. My ex-husband REFUSED TO MOVE TO A HEALTHIER, SAFER PLACE, FOR THE SAKE OF OUR SON. He allowed my baby to crawl around on carpets that had VERY bad black mold underneath and a whole other old carpet stacked on top of another one. The windows were moldy, the radiators were leaking and flooding the floors, and I have pictures of ALL of this. My ex-husband FINALLY, after 7 long, miserable years of living there, said that we "can now move".****So it took me a long time to find a place that would take me with my now BAD credit. We got in here because of my ex-husband's income from 2 jobs. I am UNABLE to move. I cannot even pack anything, or do any kind of lifting-type of physical work. Maintaining the lawn and things like that this summer will be difficult, but the winter was difficult because we just had 2 feet of snow on the ground less than a month ago. And that meant that I had to shovel when I am not supposed to go past a certain weight. The snow got very heavy because I was so sick and the snow was flying constantly, that I could not even shovel little-by-little so that it doesn't pile up to super-heavy shoveling snow.
I am embarrassed to ask for financial help, but at this point, things have gotten so out-of-control that I NEED to.
I plan to "pay it forward" by starting up a Crohn's group of some sort for people who have chronic INCURABLE illnesses. And I would also like to find out WHY such a dire biologic life-saving infusion medication COSTS MORE THAN MY VEHICLE. JUST FOR **ONE** TREATMENT. As my landlord's mom just told me, "IT'S CRIMINAL". AND YES......I BELIEVE IT IS.
I feel like I am in big trouble. I am not the best with math (but with grammar, I do very well), but $22,000.00 EVERY TWO MONTHS, FOR THE REST OF MY LIFE.................................................IS IMPOSSIBLE. PLEASE HELP ME.
****I LOVE MY SON WITH ALL MY HEART AND SOUL, AND I HAVE NOT SPENT MORE THAN 2 DAYS APART FROM HIM (FOR MY BROTHER'S WEDDING) SINCE HE WAS BORN AT THE END OF 2008. HE HAS BEEN IN MY PLACEMENT FOR HIS ENTIRE LIFE, AND I HAVE BEEN HIS PRIMARY DIRECT CARETAKER 99.9% OF THE TIME. I WANT MY SON TO HAVE THE BEST LIFE POSSIBLE, AND I KNOW THAT IT *IS* POSSIBLE BECAUSE OTHER PEOPLE WHO HAVE CHRONIC ILLNESSES HAVE CHILDREN TOO. MY SON AND I JUST NEED SOME HELP GETTING ON TRACK HERE AFTER ALL THE WRECKAGE THAT HAS BEEN DONE.****
Thank you for taking the time to read my story. Any help is greatly appreciated.