I don’t want to say interesting but scary, terrifying, excruciating those might cover it. John has been in an HE (hepatic encephalopathy) episode for about a week and a half and Sunday was finally starting to come out of it. He started having pain in his right side and nausea that the medications we have did not help so I decided to take him to the ER (he NEVER has pain other than his knees).
When we got there they did some blood work and a CT of his abdomen and found out his hematocrit was 7.3 (14 is normal for a male for him closer to 10) and they found a 4cm mass oh his liver. Needless to say, we were freaked out. They did a biopsy and endoscopy and on the endoscopy, they found a small bleed in the stomach not from a varices from the liver disease and banded it so we hope that will stop theHCb will go up. We got the biopsy results before we left yesterday and whatever the mass in his liver is it is not malignant so that is good, what it is we don’t know. We are still struggling with no vehicle and it’s hard to get things done and plan appointments but John is now involved with Palliative Care so I hope they can make some things easier for both of us.
To top off his health scare our HVAC went out on Friday before we went to the hospital on Sunday and it is going to take around $500 to get it back up to where it needs to be. Right now we have to get a board that may have been struck by lightning and it is around $200 not counting what has already been done. I swear sometimes it feels like we are the old Hew Haw song Gloom Despair and Agony on Me. BUT there is no cancer in the mass so that is something to eternally grateful for. This has shot the trip to the races in October for our anniversary BUT we are still working on the wedding and he is super excited about that, he even got measured for his tux to make sure they have his size in tails!!!! Thanks for following along with our adventure we all our life.
As you know if you read my blog we have been without a car since last year. It has gotten where it is so hard to get a ride, John just wants to go fishing or go to the grocery store and it is all but impossible so we are trying something different. Charity Cars is a website that collects donated cars and gives them to people in need. The link is to our profile and if you could vote for us it would be great, the harder we work for votes and donations the more our chances of getting a car donated in the area the better our chance of getting a car.
It is hard on both of us not being able to just get out of the house and get a break from the 4 walls, kids, and grandkids it is making us all grouchy. If you have a car you would like to donate they are tax deductible, if you have one you would like to sell us for a really low down payment and low monthly payments let us know. We just need to be independent again! Short of not paying our other bills coming up with a huge down payment that a lot of buy here pay here folks want we just don’t see it happening anytime soon.
We are eternally grateful for rides from our kids and my aunt letting us borrow her car but I feel like we are teens waiting for a ride from mom. SO vote for us and help us move up the list, donate, share, if you know a dealer who might be interested in donating share with them anything.
John and Mary
Well, folks, John asked me to marry him. I finally get my “real” wedding for our 35th anniversary in October of 2019. It will either be on Saturday the 12th or Sunday the 13th depending on where I can find to have it. Here is a link to our wedding website (never knew there was such a thing). John and Mary’s wedding website
I am going to get a real wedding dress (I am so excited) so I have started looking on Davids Bridal and found a few I really like. John says he wants to wear tails but I haven’t found a place that rents them his size yet. I know, I know some are way out of my league but a girl can dream. 😀
I talk a lot about John and all his problems but what I haven’t really talked about much are me and all my fun problems. I have had high blood pressure and asthma for years (high BP since my early 20’s when I was skinny). I was diagnosed with fibromyalgia and spinal stenosis (yeah old people bones) about 15 years ago. I have had pneumonia about 5 times over the last few years and been in the hospital more than John has.
I have not had insurance since John had to quit work and don’t qualify for anything else because he was on disability and now Medicare and since I am his full-time caregiver I don’t work outside the house or have I earned any work credits in the last few years due to kids, school and taking care of him. In December I was in the hospital for a few days and had something called a Schatzki ring or Schatzki–Gary ring (a narrowing of the lower esophagus that can cause difficulty swallowing (dysphagia). The narrowing is caused by a ring of mucosal tissue (which lines the esophagus)”. In my case, I felt like I was choking all the time and could not even breath at times. Eating was painful for me and I felt like I was going to die. They went in and stretched it and that took care of the worst of it.
I had been referred to the swallowing center and went there on Monday to talk with the dr. In a nutshell what he told us was that even though I “thought” my GERD/REFLUX was cured with the meds I have been taking that are amazing what I didn’t know was that they were just neutralizing the acid and I still had it and it was still doing all kinds of damage. He told us there was only one thing that could fix my problem (because it is a structural issue where my esophagus meets my stomach doesn’t work anymore so everything I eat basically just creeps back up and when I eat instead of it pushing it through as normal it just kind of scoots it up and out the wrong way) and that was to have bariatric surgery and basically get rid of my stomach so it had to go down and not up. He flat out said that this will kill me sooner or later, it is probably responsible for pneumonia I get (aspiration or bacterial) for my sleep apnea, this chronic cough I have now that is not only annoying but painful and more.
I don’t have insurance but I really want to not die sooner rather than later lol SO if you see me selling donuts on the side of the road you know what it is for! Do they still put out jars at convenience stores? I just want people to know that yes I am fat have been for years and as you know (if you know me personally) could care less about what others think about me so this is definitely NOT about losing weight but about being able to look after John and not have to have him sit by my hospital bed while I make sure he takes his meds. It is about being able to walk to the mailbox without coughing up a lung or so it feels like.
I just wanted everyone to know what is going on and what I will be trying to get done.
Because of all the other problems we had at the end of last year and trying to get things fixed up this year travel will probably not be an option. Heck even going camping probably won’t happen because one we don’t have a car and two we don’t have a place to sleep anymore (John just can’t get up and down of one of those low inflatable beds anymore).
So, since we have so much on our plate I am entering every contest I can find (If you know of one let me know). This one we could use for our anniversary in October because they have a place in Gatlinburg. I have entered one for Valentine’s day, a few cruises, one to Alaska and I don’t know how many in Florida. We still have to look for prizes that are close unless travel is included because we have to rent a car.
We are excited to have Straight Street working on coming and fixing the kitchen floor and maybe even later come put in a walk-in shower for John. We still have the Go Fund Me to help with the cost of the kitchen and maybe the bathroom.
John M Worley and I really really need to lose some weight this year, the fatigue from his disease makes it super hard for him to be active but we ARE going to do it. I loved Weight Watchers back when I did it years ago but it has gotten SO expensive. I found the free point list so I guess we will try to do the “I will figure it out the best I can” plan lol. I sure wish we had something like Planet Fitness (the one that is $10 a month) close so that we could use the recumbent bikes there since John can’t do a lot of walking and needs to build up his stamina and try to counteract the muscle wasting that comes from the cirrhosis. We haven’t camped or fished for almost 2 years because it is so hard on him or we can’t find a good place with easy access and that is shady. This is going to be the year of “doing more” since we “did nothing” last year. The first of the year we will spend getting the house back in order and getting the damage from the leaking water heater, dishwasher and sink fixed. We also want to get outside in order and we have a few things that need to be done there. Boy, do I need a magic wand, a winning lottery ticket or an army of minions? Oh yeah and a car lol it’s hard to fish or camp or even work on plumbing with no way to go, sometimes I think we need to move to the city so we can just hop a bus. I loved Chattanooga and Nashville anyone want to give us a place to live right downtown at either LOL