Ok, so my day started out rather crappy, and by crappy, I mean it started out good with the girls and went down hill after I dropped them off to school. I left my car at the dealership at 8:30 and now at 2:00 I still have no rental. I finally told them to forget it, I will just have the courtesy car at the dealership get me when it is done. All my errands will have to wait until tomorrow.
But tomorrow I am going out of town after Hannah’s Christmas program, so I have a very busy day tomorrow. All the errands plus I need 4 new tires put on my car… and an oil change.
So today I will work on the house and will walk to Hannah’s school to get her as I have no car. But my MS is really acting up and not sure my legs will get me there.
For the first time today I had difficulty writing. I was writing a check and my hands did not want to write. Holding the pen and coordinating my brain and hand enough to fill it out was very difficult. I struggled and tears started to fill my eyes, but I did not want to cry, I refused to cry. But with each new symptom you know it’s a new lesion and that, quite frankly, is scary.
I just had a relapse a few months ago. Did IV steroids and saw an improvement for about 3 weeks, and then down hill again the last few days. Not sure if it’s the same relapse, or a new one brought on by stress and overdoing it at the hospital.
But I had my meltdown. Screamed and yelled and took it out on half my kitchen. I still have the other half to clean, ugh. Does anyone have any spoons I could borrow?
But I have rested for the last hour, getting ready to get Hannah.
Mondays and MS do not mix.
After much prodding from my friends, I am going to focus more on my photography. I am also trying to work more in my company audit business.
My medical bills are piling up and rather than ask for help to pay them, I want to start a career to continue an income to care for not only my medical bills but as a source of steady income.
Sometimes I hate not having positive things to say in a post. And the last 2 days have pushed me to the limits of my sanity. Only 3 people truly know the heck I have been through.
I broke down earlier. After getting sick from eating one very small meal for the day, I collapsed on the bathroom floor. The MS has me too fatigued to move. But the gastroparesis has me hurling. So I laid there sobbing. Hoping my girls would not walk in and find me that way. For 30 minutes I cried, curled up on the floor. From the porcelain god then back to the floor.
It’s all of it hitting me. The MS relapse, gastroparesis, esophageal spasms, fatigue, and side effects from the Solumedrol.
Suddenly life seems impossible. Thanksgiving, holiday shopping, Christmas. All that on top of basic care for my girls. I have no energy to cook a healthy meal for them and the few times I can push myself I am left with no energy to cook my food which must be a different diet than theirs.
I have no energy to talk on the phone. No energy to move my arm to scratch an itch. This is not tired… this is extreme fatigue.
And with all this going on I still have people calling me, asking things of me. I have finally refused to answer the phone. I am letting Allison answer and tell them I am too ill to talk.
I had a well meaning friend say to me, “Hang in there hon, tomorrow is a new day.”
I just burst into tears. I am trying to get through this day, I can’t even imagine another day like this.
I need help but there is no one to help. I feel so lost.
I have kids. And at times I feel I can’t keep caring for them. But they bring such joy to my life. And I do not think I can stress enough as to how good they are at making life easy for me when I am sick. They help without attitude. They give and care so easily. I could only imagine how hard life would be if they were not so extremely well behaved.
I had my breakdown. Rested a bit, took some medicine, then Allison heated me up some of the best soup ever… Trader Joe’s tomato and roasted red pepper soup.
I am getting tired from typing so will end this soon, but I wanted to post this for those of you at the end of the rope.
I have no words of wisdom. I can’t say “do this” or “do that” and you can get through it. Just that there are days when it is truly all too much. There are days when we are not strong enough to bear it anymore and we feel like giving up. When there is no hope in that moment. And in that moment stop trying to be strong. Give in to the weakness. Cry, scream, curl up in a ball.
And when the worse is over, you will then look back and realize in that moment of “weakness” you were your strongest.
Allison and Preeya are in a Robotics club. It is her and 5 other people. They will build a robot and compete in competitions. There is a list of things their robots must be able to do.
The robot must be a certain size. Here is the beginning of the robot. Actually he is a prototype.
Below the robot is being driven by Allison. (She is not in the picture)
As you can see to the left there is a ramp. The ramp must be a certain pitch and the robot must be able to make it up and over the ramp. It must also use an arm and raise a flag up a flag pole. It must take a block from one of the crates on the left and pick it up and place it into another crate. It must also be able to do a chin up. Lift itself up on a bar off the ground.
They have made quiet a headway but have several months work ahead.
Below are 2 completed robots from previous years.
The top one could lift a 200 lb man.
Last year the one above won first place in North Carolina. But this year the state of NC is not allowing out of state competitors. Guess they are scared of us West Virginians beating them. :D
So once they have finished the robot they will go to several competitions and hope to being home a prize. In the meantime, they are having a blast learning about engineering, design, and software programming and applying that knowledge toward the robot.
A YEAR IN PICTURES: DAY 316-318
Monday I ended up in urgent care. Not because anything was wrong, but I needed to prove I was not having a heart attack. My esophageal spasms mimics a heart attack and before GI could in good conscience treat me without seeing me, he had to ensure it was not my heart. It wasn’t. And we are now trying a new treatment. So far it is working so so. Hope it improves more as I take it.
On Tuesday we received our first snowfall. Not a whole lot, but we still have some lingering around a few days later.
Today, the lovely, Mrs.Lesley and I went shopping for Thanksgiving dinner. We are attempting to cook a dinner for 18 people. She seems a bit trepidacious about the whole thing but I am not all that concerned. After all, what is the worst that could happen? Food poisoning? She is after all a nurse practitioner in the ER. Surely she can handle 18 patients at once.
After my round of Solumedrol, I now have thrush. I googled it but it looks NOTHING like this…
Ok, maybe I should have googled ORAL thrush and not the bird.
Although, I am pretty sure the thrush below does have thrush…
My oral thrush, however, does not look like what normal thrush does. Usually it’s a nasty white furry coat.
No, no, no. Not like that. First off, that is a nice fur coat, and second, I mean on the tongue.
But mine is not white, nor furry. It is just a really red, raw tongue with a lot of white bumps. And it hurts bad.
I ran into this problem when I had my last IV infusion of Solumedrol, so now I know, Solumedrol equals oral thrush aka candida.
Why do not not tell me this? Warn a girl about this nasty thing that is about to happen.
And so it goes, I now have thrush, but luckily my doctor is calling me in a prescription for it. After all, it does require prompt medical intervention. ;)
I love West Virginia. Just ask anyone who knows me and I continually sing it’s praises. But what I don’t like about WV is our lack of Whole Food stores and Trader Joe’s.
The real reason I want a Whole Food store is simply to be able to buy Blue Sky root beer. Which I will be stocking up on my next trip to Winston-Salem. This is some seriously good stuff.
As for Trader Joe’s, well, I am still feasting off of the greens, cheese, and such I got my last trip down. I have never had spring greens last this long. And it’s all organic. Good stuff. And the prices are amazing.
So, I will have to hold off until Dec 18th and then stock back up on things.
But man, I could really go for a good Blue Sky root beer. I guess if all else fails I could head down to Mission Savvy in Charleston and buy me a can.
I feel like I am being strangled and no one will help.
It started Saturday night. I scared my mom half to death. My esophageal spasms hit. It is as if someone is strangling me. The pain is unbearable, It spreads to my chest, shoulder blades, back, jaw. It has been likened to a heart attack.
Well… here I am , 3 days later and no relief. The doctors can do nothing as there are no other medications I can take. The only option is the ER for pain meds and I refuse to go to the ER as they treat you like crap there.
Actually there is medication but it knocks me out cold, and I have 2 girls I need to care for. Plus, I am unsure if this is from the MS or the gastroparesis. Actually I think both as they are related.
I feel so lost. I pray this lets up quickly. I cannot bear much more. I seriously think I am at my breaking point. I just want to go to the ER and tell them to induce me into a coma until it is over. Is that an option?
It’s that SYMPLE!
I have a great app that I highly recommend. It is called Symple.
This is great for keeping track of your symptoms, be it MS, migraines, fibromyalgia, lupus, gastroparesis, whatever.
It is easy to use and record. You can add you own symptoms and factors. You can email it to your doctor.
For my MS, it is great. I can see when my symptoms worsen and based on what, stress, activity, and so on.
It is free, and you can get it by clicking here.
It tracks it by months, a year, 2 years, entire history and so on.
A Year In Pictures: Oops edition.
I am sooooo far behind. Oops. I forgot to post for a few
days, weeks, months…
This was September and October
As you can see, there are some blank spots in October. To be honest it was a rough month.
November is not shaping up any better, but I am trying my best to do a picture a day to remind myself of the good things.
So, here is my November so far…
It started off the day after Halloween with the Kindergarten party. Hannah is the witch standing up in the back on the left.
Then we celebrated Reagan’s 2nd birthday.
I really started struggling, so I went out into nature for some solace.
So the next day, Monday, I called my neurologist, so off to Winston-Salem I went to see her.
The doctor visit was Tuesday. It went well, as well as it can go when being told you are in an MS relapse. But that evening a friend and I went out for an amazing dinner. I let all my troubles go and enjoyed myself.
On Wednesday I found myself back home in time for 3 days of IV Solumedrol.
Which led me to a blurry Thursday where I lied on the couch most f the day in a drugged stupor. My mom was with me t help me out.
I was out of it Friday too, but managed to work a puzzle with my mom some. It was fun to spend some mother/daughter time despite how bad I felt.
Saturday things turned very rough. I did manage to help Hannah get a school project completed.
Sunday I had to say goodbye to my mom as she headed back home. I love my mom more than anything and miss her terribly.
I broke my finger today, but on the other hand I am completely fine.
Day 3: I am thankful for Allison’s friends. With tingling, fatigue, headache, and all setting in, I needed desperately to get outside. Jamie. joined us for an outing to the lake, the playground, and an exciting fun trip to Dollar General. And we managed not to get kicked out of the store. Thanks, Jamie, Allison, and Hannah for keeping me young
Ok, in my last post I said…
"You ever know someone who would always say, ‘OMG, it is 9:00 and I forgot to eat all day.’ And you just want to slap them because how can you forget to eat all day. Heck, I wake up planning my dinner."
Well, having posted that reminded me of this morning. Hannah got up a little after 7:00. At about 10:00 she was walking through the house with her eyes half closed and said, “I am so sleepy.”
I asked her why she got up so early. She replied, “Well I was asleep but then started thinking about pizza.”