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Jaime's Endometriosis Battle Fund

$2,230 of $25,000 goal

Raised by 24 people in 5 months
PLEASE SCROLL TO THE BOTTOM TO READ THE LATEST UPDATE - IT'S SIGNIFICANT. 

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Hi, I'm Jaime.

I have been living with severe and painful endometriosis symptoms for almost 27 years, and I'm not yet 40. 

I have a Bachelor's degree in Hospitality Management, and went back to culinary school because I wanted to change the world of fast food as it pertains to health. 

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I spent six weeks of the last quarter in school, in and out of the hospital with severe pain from a sudden leak and weakness in my spine that was causing partial paralyzation from the waist down. 

I have since connected this to side effects from the birth control I had been using for many years to kind of "deal with" my endometriosis pain. 

I doubled up on classes - doing both day and night for the final six weeks of school - to make up for the lost time and get my degree.

I did this using crutches and on heavy painkillers and nerve medication, and I graduated with honors and a 4.0 GPA.

I missed the recognition for attendance, despite making up my classes - although I had missed no school time all year. 

I got a job with a great company and worked my way up to a semi-decent hourly wage, paying my dues with the rest of the world. 

I had savings, health insurance, made sure my husband was insured, and thought we had a pretty okay cushion for a minute. 

But when we decided to try to have kids, things went far south. 

We have been trying to have kids for the past 10 years, meanwhile my symptoms have increasingly gotten much, much worse as endometriosis grows larger inside of me and interracts with my hormones. 

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At least 25 out of 30 days a month I experience: 

painful cramping 
pelvic pain
bleeding - from spotting to pouring 
nausea
vomiting 
lack of appetite
symptoms of myalgia
chronic fatigue 
IBS 
bathroom issues
incontinence 
dizziness
fainting
fogginess
hot flashes 
hair loss
weird hair growth
symptoms of autoimmune
Hashimotos autoimmune symptoms 
headaches or migraines 
tingly arms and legs, hands and feet  
electric sensations
loss of feeling 
memory loss 

I have grown several nodules (masses) in my thyroid, causing at first hyperthyroidism and then Hashimotos as my hormones fluxuate. 

Although they are benign, they are growing slowly and cause massive discomfort - and I have had to have repeated ultrasounds and biopsies on them to be safe. 

I have been to the ER at least 6 times for severe abdominal pain and swelling, and severe bleeding. 

I have been diagnosed with everything from "heavy bleeding" (which is not a diagnosis, but a symptom) to colitis - inflamation of the colon, and IBS. 

I did not know what the pain actually came from until late last year - after 27 years of suffering - when I found endometriosis through my own research. 

I then had to go to 5 different ObGyns to find one who knew what endometriosis was and would help me diagnose it. 

This doctor recognized the symptoms and did a laparascopic surgery - which cost me $3500 out of pocket and cleared out my 401K - and I was finally properly diagnosed with Stage 3 endometriosis.

The surgery revealed the the endometriosis was blocking my fallopian tubes completely and causing them to swell - and it could not be removed completely. 

After the surgery, I received another hormone treatment to try to shrink what was left - that did not go well and made my symptoms worse. 

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My migraines got so bad, I couldn't get out of bed for almost 30 days without falling over. 

As the previous breadwinner of my family, this has become an issue. 

Prior to getting sick, I was covering all of the financial stuff while my husband was helping me to start a home business so I could eventually retire. 

He has spent a lot of time taking care of me, getting me to the doctor and the hospital for surgery, shopping, cleaning and taking care of our rescue cats. 

We've gotten as much support as possible from our family. 

We also have a family of rescue and foster cats - they are my babies since I have been unable to have my own - but they are an added expense. 

At the moment I am being given the option of having surgery every 9 months to remove the endometriosis that will continue to grow back, or get a hysterectomy. 

I have to do something because I cannot function with this pain - it's extremely miserable. 

I am attempting a hormone suppressor to induce menopause, but the side effects are bad, so I'm still in search of new treatment and options. 

But I've run out of money and I'm about to run out of FMLA leave - which means losing my health insurance. 

I am struggling to pay rent, get groceries, and cat food. 

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We have cancelled cable and as many extras as possible without fully closing shop on our not yet profitable business - internet and phone bill. 

I have not been able to work for over 6 months, and insurance only covered 60% of my paycheck, so everything has been sucked dry. 

I am waiting for long-term disability insurance approval, but it's very slow and will pay less than the short term. 

I would like to find answers to my pain and end my sufferring, but I need help financially to fund the treatment and pay my back bills - while we focus on keeping us off the street. 

I hate asking for help. 

But any moment I am not feeling too sick or at the doctor - which is a handful of hours a week - I am doing something to promote endometriosis awareness as a way to give back. 

It gives me hope and strength to know that at least younger girls of today might learn something from what I am going through. 

I need help and would appreciate anything that you can offer. 

The bills in total are now in the tens of thousands with more to come. 

Thank you so, so, so much for anything you can do. 

I will pay it forward.
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MEDICAL UPDATE: The ultrasound on my thyroid showed no growth from last year, which is great news so far. Yay!

I have scheduled an appointment with the surgeon I want if he has the schedule I want. He's my mom's surgeon and I'll be flying out to meet with him next week and see what he thinks. He is also a laporascopic surgeon so I am going to see if he has experience in endometrial excision. If all goes well I could have all my little aliens removed and be fully healed by the end of the year. Fingers crossed.

Thanks to some help, my insurance coverage is being extended - for now covered through Oct 30. And Jason did successfully get some part-time work. We are still looking for a desk or w@h job because of his planters faschiitis. But things are starting to look up and I'm hoping to be able to bring down the amount of my go fund me once I cost out my surgeries.

Thank you for all of your support and love.
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I'm having trouble updating. Limited functions through my migraine.

In trying to navigate the treatment of the side effects of my treatment for endometriosis I'm having a real struggle.

I am now on anti-seizure medication to prevent further TIA events or worse and it's helping with the electric feeling in the brain, but the migraine is not ending so it's hard to function although I am trying still.

The most recent doctor visit I had was with a new endocrinologist who is pushing for surgery to remove my thyroid nodules or possibly my thyroid if necessary.

She said the size of my thyroid was more than double and could be pressing glands and possibly causing cervical pressure especially due to the hormonal inflammation I experience with the endometriosis treatments.

So I'm off the hormone treatments pending new blood tests, and I'm scheduling a new ultrasound to determine if my nodules have grown in the past year at all - if they've grown it will require biopsy before surgery.

All of this could be very well covered by my health insurance, however, as mentioned in my last update there is a snag with that.

Nordstrom has now billed me from December to August the remaining balance of what was not paid due to the inaccurate statements they sent me.

I have to pay a small portion of my bill by August 30th, and then I have to pay $2500 by September 30th or I will lose all coverage.

If I don't return to work by December, I will lose my job (with the option to reapply for hiring when I'm ready) and when that happens I will lose my insurance anyway.

But If I can get this migraine (etc.) issue sorted out - and if they thyroid surgery actually will help, then I think that's my best option in order to get back to work.

Jason did not get the job he was interviewing for - or any that he has interviewed for, but he's still working on it and is also my taxi, grocery, prescription pick up, and all around support for everything.

I spoke with social security office on my application for SSD and answered some questions their doctor had for me. I will have an answer on that in 2-3 weeks and I'm hopeful I can get help there.

I have a lawyer working on my appeal for long term disability insurance with Metlife. That is months away per their estimate.

I am hopeful that once these things kick in I might get a bit of a back settlement to help pay for the remainder of my endometriosis medical treatment so I can stop living on a lick and a prayer.

In the meantime, we are living off of the bits and pieces we get in support from others and from selling stuff. We have reluctantly applied for help from social services for rent and food, but these things even take time.

We may lose our bank account and have a lot of debt go to collections, but I am hopeful that one of the miracles I am working on will get somewhere while I continue to push through the pain.

Thank you again to everyone who has ever supported me or us. I stay strong in the faith that I still have a lot to offer you and the world.
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I got the MRI cervical of my neck on Friday, but my insurance wouldn't approve my MRI of the brain with contrast until I see my neurologist - although it was ordered by the ER and my primary.

Anyway, no worries I'm going back to the neuro to find out more about what is happening.

I am still getting the same migraine with the electrical pulses again, but I'm learning how to spot the signs of "the big one" and calm myself down. It's somewhat physically or stress induced, although I wake up with it, so also sleep induced. lol idk

Jason interviewed for two jobs and one call-back (did you know entry level sales jobs have call-backs in Las Vegas?), he's still waiting to hear.

I buckled down and went to social services today to apply for eviction prevention. I passed prequalification for assistance and need to bring in my medical records to my appointment on Sept 4th (soonest possible). Bad moment in my life.

I've also had a lawyer pick up my case to help with my appeal to Metlife for denying my policy coverage. The lawyer is confident we will get this fixed, but it can take up to 6 months so we're scrambling in the meantime, trying to stay positive and make things work.

I am essentially praying for Jason to find work that will offer him insurance so I can switch in case I lose my job and coverage over this. I know I cannot afford cobra. If not, Medicaide or maybe give up doctors.

There's a lot to work out and I haven't continued my research to find a doctor who can do my endometriosis excision surgery because of the onset of this new mini stroke/migraine thing distracting me.

I do feel that I need to get the MRI with contrast to at least rule out brain damage after the TIA as advise by the ER, and the more I research the more I believe a PET scan would be appropriate, but that's much harder to get approval for.

I'm just lost in what's happening medically so I'm taking it one appointment at a time. I appreciate advice but I can't process it or go anywhere with it. Also, I don't think it's all applicable with my symptoms. A lot of different illnesses mimic symptoms of each other. I'm just testing one thing at a time.

I feel as though something is touching my nerves, and I've felt that years before. It was also misdiagnosed back then but I got a surgery that fixed it. It's happening in my brain now, and in my neck and arm and legs. The more it happens the more I feel myself shutting down, but I'm really working hard to be strong. Communication is harder the more I try to think about it so I stop now.

Any support I've gotten here has been so incredible and has helped us so much. We are getting trickles from selling stuff and little freelance jobs and it just feels like we've been able to get what we need one day at a time. Thank you so much.
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This past weekend I woke up with the worst headache of my life, with flashing lights, blurriness in
my right eye, and the inability to form words - which is called expressive aphasia.

At the time I thought it may have been a reaction to an accidental pain medication combination, so I stopped my medications and waited it out.

I have a history of ER visits that generally result in nothing but large bills and inaccurate diagnosis, and I'm attempting to save for my endometriosis excision surgery, so my judgement on when to go to the ER was clouded.

My last ER visit was for abdominal pain and swelling which was incorrectly diagnosed as some sort of colitis and was treated with a horrible antibiotic ciprofloxacin. After this visit my gastroenterologist confirmed he did not see any confirmed colitis and took me off of the cipro - which is known to cause joint and nerve damage. Later, I received my endometriosis diagnosis, confirmed through surgery, which answered the question about why I had a swollen abdomen, and confirmed the misdiagnosis.

This is a similar experience I've been having most of my adult life, so you can understand my reluctancy to go to the ER.

After about 30 hours of suffering through this migrain episode, I began to get quite scared with the inability to verbalize.

I went to urgent care and was referred to the ER, where the doctors told me I should have come in right away, however I was lucky that there were no immediate indications of a stroke.

I could not confirm if I had numbness or tingling because that is a symptom I feel on a regular basis with the endo, but the doctor felt because I could read, write and understand what people were saying that it might not be a stroke.

(Funny anecdote: although I carried a sign all day stating I could hear and understand but could not speak due to aphasia, a lot of the technicians and nurse assistants tried to use sign language or talk loud and slow. One lady started writing stuff down for me, because I was writing to communicate, and I literally did a face palm because I had written three times that I could hear and understand what she was saying. The doctors and NPA's all seemed to understand what aphasia was and talked to me normally, but I kind of thought that was funny.)

My CT Scan was normal, my EKG was normal, and my basic blood tests were normal. The neurologist wanted to admit me to the hospital for an MRI to ensure there was no brain damage and try to determine a cause.

I chose to discharge myself if it wasn't imminently life threatening as the cost is about $1500 a night. I asked if I could do it as an outpatient, but they said I'd have to sign a release and move to my primary care - they did not want to release me. I made a choice to leave as I felt the stress of being there was making it worse. They advised follow up with my primary doctor and an MRI ASAP, so I signed the release and left.

The hospital had put me on a drip with a minor painkiller with benedryl - I refused the anti-psychotic seizure medication until I knew what the cause was, because I was scared for further side effects. But the painkiller they gave me did take the edge off and let me sleep for an hour (after being up for about three nights with just cat naps through the pain).

When I got home after the ER I was able to rest and relax a little. I took a lot of magnesium (my natural migraine supplements) and again was able to nap. When I woke up I started to be able to speak again and the migraine had reduced to my normal headaches.

Last night the migraine came back, but no flashing lights or other symptoms the hospital told me to watch out for in case of stroke. I treated with a cold pack and just tried to stay calm to avoid any seizure.

Today I went to my primary who is ordering the MRI for me. I already had an MRI a few weeks ago, so it's frustrating to do it again, but it's necessary to confirm no brain damage.

My doctor called the event a TMI:

"A transient ischemic attack (TIA) is a brief episode of neurological dysfunction caused by loss of blood flow (ischemia) in the brain, spinal cord, or retina, without tissue death (infarction). ... TIA causes the same symptoms associated with stroke, such as paralysis, weakness, or numbness on one side of the body." - Wikapedia

It may have been a minor stroke or seizure while I was asleep, but no way to confirm that for sure without the MRI. I'm still in pain but feeling calm as long as I'm able to talk.

We still have no idea what caused it. I am stopping all medications, including my clinical trial hormone to suppress growth of the endometriosis, not including my thyroid medication that I need to live and have been on for years, because we can't confirm yet what the cause was and I want to detox and see if it helps.

Jason is helping me watch out for warning signs in case we need to go back to the ER.

I received so much help this past week and it has been a blessing, helping me stay calm while knowing I can at least cover my co-pays and continued tests. I cannot even express how much it helps to know there are people who are willing to help and support me through this crazy time. I can't wait to get past this and be able to pay it forward somehow - I really miss being that competent and strong-willed person I used to be.

My doctor says I may have to endure some extra tests that show negative in order to get insurance approval to do the tests that are harder to get (such as a PET scan of the brain to determine CNS - central nervous systme issues). I am very happy that I'm finally getting an MRI with contrast because it is one step closer to finding answers and I've been asking for that for months.

I have not heard back from the insurance company yet regarding my deductables, but I am trying to just stay calm and pray that they will work with me on the past due and not just cancel my insurance. Tomorrow is the due date so I am expecting a call or letter soon. So far I've been able to continue my coverage so that is a blessing, but August 1st is the next payment date and they were asking for $2200 that I do not have.

I am hopeful that Nordstrom will help me due to their billing error and an understanding of my situation. I will at the minimum likely have to continue the $376 a month starting tomorrow to keep my insurance going until December, unless I can find a cheaper option - but since my deductible is paid I do not want to switch yet. We shall see.

Thank you again for all the help, prayers, shares, donations, and love from friends, family, and strangers alike. I truly wish I could express how much that means to me. More than words.
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$2,230 of $25,000 goal

Raised by 24 people in 5 months
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