My name is Amanda, and I’m 37 years old. Thank you for visiting my profile. I am asking for ANY kind of monetary help possible. In summary, I have severe Crohn’s Disease with multiple severe complications, left in medical debt, and post-divorce struggle of trying to pick myself back up when there’s no one around to help at all. I’ve also had a head injury, am losing cartilage and proper tissue between joints, and now we’re getting evicted. Please, if you read this, my son and I need help. I know many people are struggling, but there are people out there who have the ability to help, and I appreciate ANY help, even small amounts of help.
The story (& believe me, I tried to keep this a bit short, but there’s so much more I could add in, but I’m hurting bad & need to try to rest at some point): In 2004, 2 years after graduating high school, I was diagnosed with Crohn’s Disease and Endometriosis. The diagnoses list grew longer, and so did the severity of the diseases. I have filed disability twice (once in 2006 before they even accepted Crohn’s as a “disability” on there, & once at the end of 2019. Despite all the medical evidence, I got denied. I also have no way to afford an attorney & am unable to utilize Legal Action, & it has been impossible for me to find an attorney who can help me pro-bono. Life has been quite an unexpected ride. I wasn’t supposed to be able to have children, & then I was blessed with my son, Aidan, shown below. I had been in a relationship with his father for 10 years, was loyal, very very sick, only to find out he was cheating on me in November, 2016. He was abusive and not understanding of my medical issues. Just as I found this out, I was in a very bad flare with the Crohn’s, and I lost 50 pounds in 3 months (between September & December), ending up needing an emergency procedure for them to re-inflate my esophagus, as the dehydration & disease caused my superior mesenteric artery to collapse on my digestive organs. I nearly died. That was one of a handful of times I almost died. I had thought there were only inappropriate pictures being sent between my now ex-husband & the other woman, also named Amanda…only to get beat up by him in March, 2017, he abandoned my son and I and left us in the dust, and then he impregnated the other Amanda. Their baby was born BEFORE our divorce was granted. I was heartbroken & am STILL in financial turmoil because no matter how hard I try to get back on my feet, things are hitting me hard.
I am unable to work regular jobs, but I did try my hardest. I loved the work I was doing especially at the 2nd to last one. I have not been fortunate to have a business/manager understand my medical ailments. Since around 2006 (not including all the work I did before my diagnoses), I would lose jobs, then get up and get them again, & that cycle continued. I had my son in 2008, had a complicated pregnancy, was supposed to be on bedrest but worked anyway because I was HOMELESS AND PREGNANT (I so wish I could re-live that part of my life, especially my pregnancy, in a positive way). My divorce darn near did me in, & I represented myself, which is something I will never do again (be unrepresented or do pro-se).
Some of the medical procedures I’ve had done:
Was put on Lupron (induced menopause) for 6 months at age 20, because I was told it “works really well” for “getting rid of” endometriosis. Well, it came back anyway, and it came back after multiple surgeries.
4 laparoscopies for endometriosis…excisis of adhesions (the endometriosis literally came back 6 months after an early laparoscopy, as well as after Lupron and another laparoscopy)
13 endoscopies for Crohn’s Disease (upper GED…gastroesophagoduodenoscopy)
12 colonoscopies (yes, I had to tell my own mom how menopause AND colonoscopies feel to experience)
multiple x-rays, CT Scans, TWO PET Scans (to check for cancer, as cancers can occur when on or after coming off of biologic medications), a hepatobiliary scan, EKG’s, EEG, echocardiogram, EMG (2 different sessions)
Some of the meds I’ve been on:
Started out on corticosteroids for Crohn’s. Moved to sulfa drugs, then to meds like Asacol. Then I tried the biologic Humira, which gave me a terrible set of side effects and reactions. Then I was on the biologic infusion called Entyvio, which was ok but never allowed me to experience true “remission”, and then I had a severe bad reaction to it at the end of July, 2019. The after-effects lasted months.
Humira cost at the time: $14,000 to $16,000 for a starter pack (you had to inject yourself but a nurse had to come and show my ex-husband and mom how to inject it in case I weren’t able to for some reason), and then I believe $12,000 for every shipment. It also had to be stored in the fridge. This was before the buffers were taken out, so the medicine stung and burned so badly it was terrible.
The Entyvio is literally a 3×3-inch pouch of powder biologic specifically for IBD (Inflammatory Bowel Disease), then they mix it in a solution, let it come to room temperature. I was getting iron infusions as well (called Venofer). The Venofer was reacting badly in the same vein as the Entyvio, so when I had my Entyvio infusions every other month (at first it was more frequent, to help it build up), I had TWO IV’s…one in each arm. You sit in the IV therapy department with other people with similar issues like autoimmune disorders, including cancer.
One injection of Entyvio, every other month cost $24,000. I now have bills for this that did not go through my ex-husband’s insurance for some reason, and I’m already up to at least $80,000 just from the ones that didn’t go through. It could be higher, but I lost track with so much on my plate and being a newly-divorced, single mom.
I have other diagnoses/disorders, but for now will keep it focused on a few of the most debilitating.
Other medications I’m on or have tried for Crohn’s:
Zofran (all different types…dissolvable tablets are $600 to $800 per pack of 2 sheets of blister packs), 4 mg wasn’t enough so I use 8 mg of it if I need it. The pill form doesn’t help if you’re vomiting everything going in.
Diphenoxylate w/atropine (helps with diarrhea to slow it down, much like a very strong Lomotil…on bad days, you don’t want to take it so that the trapped nasty stuff in your tummy can come out, so I usually take it AFTER my bathroom trips).
Dicyclomine (supposedly for stomach cramps, but it just has a little bit of a calming effect on the stomach…hard to explain.
Valycyclovir for apthous mouth ulcers caused by Crohn’s Disease. (Who knew Crohn’s Disease could be in your MOUTH…you will see a picture below where I am trying to ice my jaws because the mouth sores were so bad…now, I dare not stop the valycyclovir, which can be used for this purpose, unbeknownst to me until I talked to a lady at a Crohn’s & Colitis Foundation Support Group meeting (the lady who was leading the group told me about that, and I was shocked).
40 MG Omeprazole
Benadryl (if things are not slowing down enough with all the other meds)
As far as being TREATED for Crohn’s, right now I’m trying to make the scary choice of “Do I go back on a biologic?” because you CANNOT be on Crohn’s and go untreated. I have been untreated with the proper things for over a year now, and I am terrified and don’t know what to decide or even think anymore. I’m beyond overwhelmed.
I’m on other meds as well, for other things that resulted from all the pain and emotional/mental toll this has all taken on me.
I got so dehydrated at the end of January, 2020, that I fell and hit my head hard, causing a scalpal hematoma. It was a type of traumatic brain injury. I was alone when I fell and didn’t know what day it was. The same thing happened again in February, 2020, when I weighed only 94 pounds. I am only 5’2″, but that was the scariest I weighed. I am now only around 105. The hematoma turned into a scab, but it sloughed off and with it went a baseball-sized chunk of hair that still has yet to grow back. I cut and do my own hair (saving costs wherever possible…same thing with nails, if I even care to do them anymore, and makeup). That process was super gory, and I needed to have a special type of bandage from a local hospital’s Wound Center. I have to be very careful how I cut my hair now, otherwise that hole is completely obvious. I don’t think I’ll ever be able to afford to get hair re-implanted into that area. That fall messed up the feeling in my extremities for a very long time, and my fingertips still experience numbness (at first it was mostly on the left side, as I hit my head on the right side). My balance can sometimes be off, & sometimes I can’t remember things properly or say words properly. I noticed I am stuttering more now than I ever have. It also changed my personality a little bit. That fall was so traumatic and depressing. I have so many gruesome images, but I don’t know this site well & don’t want to get banned or something.
July of 2020, I was diagnosed with hip dysplasia, and the orthopedic specialists (part of the same group as my gastroenterologist is in/my GI specialist) said it has to do with my Crohn’s and the inflammatory effects it is causing throughout my body. My left hip and groin area have always been especially painful, to the point that my mother pulled me out of work & took me to the hospital in the beginning of 2004. Now I have a double whammy because both sides are bad, and it’s impossible to sleep.
I have always been anemic, and this disease does not help. Now I’m having severe pain in my left knee that’s been going on since spring to summer 2020 but I thought it was something else. Now that I know my joints CAN be ruined because of these Crohn’s, I’m getting it looked into. I couldn’t even attend my appointment today because I spent it in the bathroom. Eating is a whole other topic.
ON TOP of everything going on, now my son and I have received an eviction notice from my landlord (despite the extended CDC Eviction Protection Moratorium until the end of June, which I sent him the form for that I didn’t know even existed until a resource person told me to pull it up online), and I have to have the rest of the rent by Friday or he will file with the court. I already told him (as I’ve always been very open with him) that I’m already signing paperwork this week to have yet another judgment on my record (something I couldn’t avoid). My son and I are unable to move, and I can’t let my son down. He asked me “What happens with eviction?” Now I’m bawling as I type this. I explained it in as kid-friendly as it could possibly be. He said, “Mommy, everything is going to be okay”. :'(
I also explained to my landlord that I am trying to do some services-type work, but that has to do with light gardening (weeding), but I’m in Wisconsin, and it is foolish to start planting before Memorial Day. I need to buy a couple months until I’m able to do this work and get some gigs lined up (I thought of this idea in 2019, and was very successful for 2 months until I had the bad reaction to the Entyvio infusion & ended up hospitalized), but the landlord doesn’t want to give me the chance to prove to him that I can do this (I’m determined despite my circumstances), despite me showing that I made the effort by paying over half the rent for this month and will do the same for May. It’s not right, and he may not want to deal with Section 8 Housing either. He won’t give me a straight answer on it.
I have been truly messed up with these ailments since 2004 (and even in my childhood…I went undiagnosed), but the crap really hit the fan in 2016 when I almost died and then when my ex-husband cheated and left us. I have made efforts to pay, especially when I HAD gotten the jobs I did get, but nothing I do is good enough. This has spiked my depression to a level of beyond hopelessness. I am $9,000 behind in rent. I can’t afford an attorney to take my ex-husband to court regarding certain things for my child (or for his back child support that he owes for about a year and a half…I won’t do anything without an attorney because he has one as his family helps him monetarily any time he is in a bind…he has more luck and help as an illegal immigrant than I do. I have NO family or friends who can help. My son and I are absolutely devastated.
My total debts are close to the $200,000 mark, and that includes ambulance bills, any and all medical bills during times where I was uninsured for years, and when I had outstanding student loans because I had to drop out of college, which I’m still devastated about. Even with insurance, the medical bills at each hospital system and place are thousands of dollars, to the point I can’t even be seen at some of them unless I “make a payment first”…what happened to the Hippocratic Oath?
The following are some pictures and captions:
Admitted to hospital one of dozens of times, 10/27/19.
Me putting a towel wrapped with ice packs on my jaws from the severity of the apthous mouth ulcers from Crohn’s (I never EVER had even a bad canker sore when I was a kid…they surprisingly got worse AFTER biologics).
After my second PET Scan. I can’t believe how young I am, and I have more medications, doctors, procedures, etc. than your average octogenarian. By the way, if I cut my hair that short anymore, the bald spot from the brain injury will be right out in the open. (After the induced menopause and biologics, I have never been such a sweaty person, and I therefore keep my hair short…now I can’t even cut my hair right because I forget that there’s a huge bald spot under there.)
My handsome, sweet son, Aidan. (As I’ve said above, his dad is an illegal immigrant…my son is half Mexican). I normally don’t post pictures of my son anywhere, but he is MY MIRACLE. I CANNOT LET HIM DOWN. I feel so terrible like I failed in life just because some diseases that run on both sides of my family have messed me up so badly, and we’re in this alone, together. I worry about his own future with a possibility of Crohn’s or something.
I am hoping someone out there will read this and be able to help. Please help if you can, even if it’s a little amount. I am desperately trying to get back on my feet. We’re still in a pandemic, and I don’t know why my landlord won’t give me a couple months…I more than qualify for the CDC’s Eviction Protection Declaration/Moratorium. I made a car from 2003 last 17 years, after I bought it brand new (in 2003…after working hard and having a previous vehicle with a cosigner, so I was able to buy a brand new car at 19, no cosigner. It all changed, and this medical stuff knocked me right off my feet & destroyed all my life plans that I had literally written down when I was younger. No one in school teaches you that VERY bad things can happen when you go through life, at any time)…anyway…now that car is gone, and I have another one that is not going to last. How can I save up to even TRY to get a better vehicle if I can’t get out of this never-ending pit of strife. We need help. If I were the wealthy or better-off one, I would do what I could to help people. I love helping people, and it hurts me that I can’t. I need to get back on my feet and see what comes of that. It would also be nice to have someone I trust live near me. I am mostly a loner…most people don’t understand this embarrassing disease. As far as rent, I have struggled financially since my diagnoses, but I would rather try to keep working with this landlord because I won’t be able to get into a “decent” place again that is in a safer neighborhood. And yes, I have asked for him to lower the rent after my ex-husband left, and he wouldn’t, and I also have asked if he could help find me a smaller place perhaps or somewhere with a bit lower rent even though we still need at least a 2-bedroom. With past evictions (only due to the financial trouble caused by the medical chaos…not for any other reason ever), and with no income currently, probably going to have to reapply for disability a THIRD time but would like an attorney to help me because the Social Security Administration made several errors in my CD that they give to you when you file…someone put that I had open heart surgery, a kidney transplant, and am on heart meds, when I’m not. That’s scary. An attorney lady I spoke with over the phone said, before our appeal time ran out because she is far away and it took me forever to find her as she was the only one who would take my case at the time, “Plan on living with someone or staying on their couch from anywhere from 6 months to 2 to 3 years for the appeals process”. :'( Anyway, with past evictions and judgments, and no income, I am not going to be able to rent anywhere.
To anyone who helps, thank you. You are saving my son and I from being homeless, and you are helping to lift some of the financial dire straits taking place. <3