It’s not about me anymore.

I have kept quiet about my health journey. I try not to mention it nor do I ask for help. I don’t want anyone thinking less of me and I was raised that you always wear a smile no matter what and that’s something I have always done.

However, today I will open up.

Please bear with me as I try to humble myself and give myself grace as it is very difficult to share because I only share with certain people and doing this on Facebook is a huge deal for me. Especially doing a go fund.

My journey started 2019…. I was always sick to my stomach and as time went on I got worse and worse. Not until 2020 that I met a GI dr that wanted answers for me and herself because she took the time to listen and realized it wasn’t in my head as the previous GI dr said I finally had answers. I went through so many testing and I did it patiently because if she had the compassion to listen to me then I had to do my part to get answers.

She diagnosed me with severe gastroparesis. A none curable condition but let’s manage symptoms was the situation I was in. That didn’t work I got worse. Nothing was helping. So off I got sent to a GI surgeon that his solution was a GI Pacemaker. That would help control the symptoms and I wouldn’t need to have the battery charged for 6-7 years. I was scared but let’s go for it because I was desperate. I wanted my life back. I didn’t want to feel sick I didn’t want to feel sick.

With all this happening we sold our home in Somers, CT and Bill started getting things ready for my arrival in SC. Dec 2020 I had the surgery. I had my follow up appts and I got the clearance to move to SC.

Then I got sick and I was reminded over and over there’s no cure this is to control the symptoms. By the time I left CT March of 2021 they had to adjust the pacemakers strength twice.

Finally, made it to SC a few months later I’m getting worse. They find me a specialist in SC that can deal with me and the pacemaker. We would drive 2 1/2 hours one way from home once to twice a month for this. He strengthens the pacemaker and yet no changes to my symptoms occurred but what occurred was the pacemaker was at its max less than a year later. So the only thing left was remove the pacemaker and do GI bypass Y. Ok that was done and didn’t go as smoothly as it should. I had many complications and knocked at the deaths door thank god it didn’t open.

Four months later my sugar is still dropping to dangerous levels and my pcp said she had to send me to what I call my angel.

She literally listened to me asked 100 questions and she sat down and said you’re a complicated case (By now I’ve heard this from every Dr and specialist I’ve seen) she goes on to tell me I sound like a have a VERY rare condition called insulinoma. Tumors on not in my pancreas. Now, I haven’t mentioned that I was having low and high sugars for many years and I was told I was diabetic and then I was told that it was my gastric paralysis condition. Nope I had a whole different condition and she thought out of the box.

Nov 2023 I am told I can collapse any moment and either go into a coma I will never wake up if I don’t die or go to sleep and never wake up. When I got back from vacation I went on to have a not so common procedure in hopes to find the area of the tumor. On to a new specialist who tells me once again how rare my condition is and how rare it can be to locate it but my results lighten up like a Christmas tree and I didn’t have not 1 but 2 tumors on my pancreas. In the middle of the pancreas on top and the bottom. I needed surgery as soon as possible.

I kept all this from my mom and kids. Only a very few knew what was going on. Finally, I tell my kids and get the courage to share it with my mom.

Half of my pancreas and my spleen will be removed and then I will be ok. I declined quickly but I never stopped smiling nor dancing or laughing. By the time my family came for my surgery March 2024 not even a year after my last big surgery I will be under the knife again.

Fast forward to recovery which wasn’t easy and in my heart I had a feeling the surgery was not successful even when everyone and the drs said I was wrong. I was told I needed to be positive.

Fast forward my sugars continue to drop and my angel doesn’t give up on me and when I threw the towel in she picked it up and placed it in my hands with hers and said I will not let you give up. I will hold on to you and I will not let go. So she went on to have meetings with the surgeon which is 2 hrs one way from my house and they are not from the same affiliated hospital.

I get a call from my dr and I won’t forget it ever. Merari the surgeon and I got off of a few hours conference call about your case. We went over everything and your pathology. I am sorry to tell you but the only way and the last option we have left is to remove the rest of your pancreas and gallbladder. If we do not do this you will die.

Well hell lol I now have another rare condition that a not a common surgery needs to be done.

Now my surgeon the only surgeon that can do this was in the mids of moving to NY.

She has everything set up for me to go. I will be trading in another set of problems for another with no guarantees it will work but if I don’t do this then I die sooner without knowing I gave my 110% for those that are fighting for me for those rooting for me for those praying for me.

For me I am tired in every sense of the word.

Now things get interesting lol with all this going on I haven’t told you all the other things going on because this is long enough.

Last night I received a call. Mom we have gone against your wishes and we have crossed the boundaries you have asked us not to cross. All of the kids have joined force. Since dad cannot be there and your best friend will go for the day of surgery we have discussed it and your daughter will take a month off from work go to NY to take care of you because you cannot do this alone no matter how much you say you can. We have covered all the bases so you can’t find any reason to tell us we can’t do this.

So yes on Dec 16th I will have my surgery in New York University of Langone. Yes, this has taken a major financial toll because when I got rear ended I got injured which 1 delayed the date of surgery and then I had to stop working. Now, my daughter is taking a month off from work stopping her studies, leaving her family during Xmas and New Year’s to be with me. I had refused to even ask because I am not that mom nor that person. I don’t want anyone’s life uprooted for me.

I am now asking not for me but because I am that mom. For help. First and foremost for prayers. Second, even a dollar to help this already stressful situation. To help towards my medical bills and help towards her expenses for taking time off from her life to come take care of me because Bill is not able to join me due to his declining medical condition as well so we think it’s best for him to stay near his drs.

It makes me sick to my stomach to ask for help and embarrassed but I’m putting all that shame to the side because if my kids have rallied around me then I need to renew my strength and continue my fight.

I have to report to NY Dec 8th and will not leave NY until the 30th which then with god on our side things go smoothly I will go to CT until the end of Jan and begin my journey back home to SC for continuing recovery and care. I will be flying to NY very frequently for my appts as well.

I would like to do this and concentrate on my long recovery to continue to take care of Bill and continue his medical journey without having to worry about all the expenses we will continue to have. Just until I am well enough to get back to work hopefully by spring.