Sleepless In South Dakota

I’ve been laying in the dark for two hours now. I took some aspirin on top of my three different night meds and am still not able to fall asleep. I can’t shut off my mind and am guessing the small amount of red pepper I had is part of the problem. I wish I could eat red peppers but often insomnia follows, even eight hours later.

So I am sure you have heard by now how a medication, hydroxychloroquine, is stated to help with the coronavirus. As I’m sure you have also heard, this is an anti-inflammatory and Lupus drug. In fact, this is my main Lupus medication.

I called my doctor’s office to see if they could write me a script so I could potentially stock up before it’s all out in my state. They said they could not. I asked about the possible shortage and they stated if my pharmacy didn’t have any, to try a different one.

Thankfully I had a month’s worth from when I was in the middle of switching doctors. But I wasn’t sure if I should take it (seeing the prescription had been a year old) so I called my pharmacist. I asked him if it would be okay and he said yes, especially with the situation right now & that they (my pharmacy) were completely out of the product. “You basically have liquid gold,” he stated.

So, I’m not as worried as much knowing I currently have almost two months worth. But it still crosses my mind. I’m hoping that will be enough time for them to make more to meet demands.

But it pisses me off that drumpf (AKA Trump) stated what he did about the medication. He started a frenzy and it was irresponsible of him. They haven’t even had actual lab trials yet to see how it reacts to the coronavirus! Some people have taken chloroquine which is much more toxic than hydroxychloroquine! According to some Lupus groups on FB, they think doctors have been writing scripts of it for family members and friends to have on them “just in case.” I assumed that is what was happening.

Please stay safe and healthy!

Darn Heartburn!

In a recent blog post (now I will have to go back and check) I stated that I had been having horrible heartburn. On my worst days even peanut butter and water would give me heartburn, which made trying to figure out what to have for the other meals a tad difficult.

I decided that I finally had enough trying to deal with it on my own so I made an appointment to see a GI doctor. The GI’s office called and apparently I had already seen one of their doctors for when I had gallbladder issues. So they booked an upper endoscopy for me at the beginning of January.

It had been a while since I’ve had to spend time in the hospital so naturally I was nervous as hell. I started crying when they went to put in my IV. If I have to have anything medical done I cry. I hate it and you would think I would be used to it after all these years dealing with my Lupus. My mom once made the comment that perhaps the reason for me being hysterical is that I had to do all this testing when I was just a kid/young adult and it somewhat scarred me. I think she is right.

Later, I awoke in my room and asked the nurses what they found. I was told that I have Gastroparesis which meant my stomach was not working correctly by not completely emptying. They changed my heartburn meds and told my mom (since I was coming off the drugs) to call the office if things didn’t change.

I was told nothing else so I had to do some online research, which is ironic because normally doctors do NOT want the patient to do that. Suddenly things began to make sense. I had been experiencing some of the symptoms (nausea, the constant feeling of being full, no appetite, and heartburn) but I just thought it was my Lupus.

The new medication had helped the first month or so but now I am starting to get really bad heartburn again. It looks like a diet change is in order, which should be interesting because I am already a finicky eater.

*Thanks to http://www.mommiesquietplace.com for use of picture

Day Twenty-one

This last weekend my mom, sister and I went to Minnesota for a concert. I double checked that I brought my CBD oil with, as I would need all the extra help I could get that weekend. Our two days were going to be jam packed and I was afraid of how much it would effect me since I normally don’t move around a lot. I also didn’t want to interrupt my 30 straight days of using the oil.

Before leaving for the weekend, I talked with Jodi and gave her an update on things. I am still not feeling any energy, so she mentioned that I up my dose to 15 drops in the morning and 15 right before bed. That night I took 15 drops. The next day, Saturday, I had a headache so I took Advil instead of the oil. I wasn’t sure if the headache was sinus related, Lupus/Fibro related, lack of sleep (went to a concert Friday night) or because going up ten extra drops a day was too much for my body to handle (sudden change). Saturday night I lowered the amount to 12 drops and kept it at that number. I haven’t had any nausea or any more headaches. I will stay at this amount for the rest of the week, then ease up to 15 this weekend. It’s interesting how all bodies react differently.

Yesterday I had some Fibro pain in my neck so I put three drops on my palm and rubbed it in the area that had pain. Thirty minutes later I remembered my Fibro pain, only to find that I no longer had any pain! I am positive that it took less than 30 minutes but unfortunately that is when I took notice.

Getting back to my normal self

So mentally I am feeling better. I figure if my friends don’t want to be in my life, then I will just find some friends that care. Although it is somewhat difficult to do if you never go out and socialize. Ha! Most of the time I don’t feel well to go out. There are a couple writing groups that have had meet ups, but it’s usually only once a month and I tend to have more bad days than good in a month’s time. I will still try to go to future ones though, I’m not giving up.

At the beginning of the month my mom and I went to a showing of Cirque Du Soleil. I have never been to one before and it was BRILLIANT! Seriously, if you have the chance, GO. It is totally worth the money. Going to that with my mom really helped me get out of my depressed/negative funk.

Now how I feel physically is a different story. My Lupus is in a flare and has been mean to my stomach all of last week, making it feel nauseated and acidic. My fatigue has been horrible. I get about 12 hours at night then usually can’t stay awake during the day so I take a nap on top of the 12 hours. No, I’m not getting “too much” sleep. I listen to my body. Besides, with Storm wanting to go outside every 3-4 hours, I don’t have a chance. My Fibro areas have been painful and my Lupus has been making my joints ache. I know it will be fine though, the flare just needs to run its course.

Lately I have been obsessed with a book series about a demon chic that kicks ass! 🙂 The author is Pippa DaCosta and the first in the series is called Beyond the Veil. Seriously, it’s been ridiculous. It’s the only thing I do during the day and as soon as I finish one, I immediately go online and purchase the next in the series. It has been quite some time since an author has grabbed my attention like that. But it is possible that I can’t stop reading her books because I haven’t read any other demon series/books. I’m not sure if men would like it as it has some romance. But check it out! The prequel is a bit darker than the rest of the series, but the first in the series is currently free on Amazon. And that is how I became hooked. 🙂

I had a couple ‘snaps’ from Snapchat that I thought you guys might like. Here is one but I will make another post for a few more. I hope you guys are doing well and I will try to visit some of your blogs as I know I am behind! 🙂

LOL sometimes it is difficult to tell which way she is looking!

Book Review – How To Be Sick

I normally don’t write book reviews on here but felt I needed to get the word out about a recent one that I finished. Mostly because it has to do with being ill/sick and I know some Spoonies/Lupies follow me. The book I am talking about is called, How to be Sick by Toni Bernhard.

As pictured, I bought the paperback version but you can also purchase this book as an e-book or Audiobook. I like to get my “nerd” on and highlight things to remember, and sometimes an electronic highlighter just doesn’t cut it (I love office supplies!). 🙂

I am pretty much making this my sickness Bible. Toni offers a great amount of examples which helps the reader think of ways they can apply it to their lives. And if you are a Byron Katie fan, Toni mentions her and includes some of her quotes.

Here is a list of the chapters to give you a better example of what you will be reading.

1. Getting sick – A romantic trip to Paris
2. Staying sick – This can’t be happening to me
3. The Buddha tells it like it is
4. The Universal Law of Impermanence
5. Who is sick?
6. Finding joy in the life you can no longer lead
7. Soothing the body, mind and heart
8. Using compassion to alleviate your suffering
9. Facing the ups and downs of chronic illness with equanimity
10. Getting off the wheel of suffering
11. Tonglen – Spinning straw into gold
12. With our thoughts we make the world
13. Healing the mind by living in the present moment
14. What to do when (it seems) you can’t do anything
15. Zen helps
16. Communicating with care
17. The struggle to find community in isolation

As the last chapter finishes, the author has a guide to help with specific challenges (I loved this part!!). A couple challenges include: Blaming yourself for being sick, feeling ignored by family and friends, and suffering due to uncertainty about the future.

I want to thank my cousin, Rebecca, for recommending this book. And of course, I would like to thank the author for writing it. 🙂 The author has two other books for sale, How to Wake Up and How to Live Well. I currently have How to Live Well on my bookshelf and can’t wait to start it! 🙂

 

 

CDC awards multimillion-dollar grant to build lupus awareness | Sky Health News

http://skyhealthnews.org/cdc-awards-multimillion-dollar-grant-to-build-lupus-awareness/

Lupus and Fibromyalgia

Well, so much for trying to get blogs written for Lupus Awareness Month! Hahaha! Oh well, at least I was able to get a couple done. And that is just how a person with Lupus needs to think; if it’s not done, then it’s not done and not to fret about what did not get done that day. However, I am fully aware that this easier said than done. At times I struggle with the frustration of how to let things go and\or take one day at a time. And honestly I don’t know if I would have learned these lessons, if not for Lupus.

This month is also Fibromyalgia Awareness Month with the National Awareness Day being May 12th!

Lupus and Fibromyalgia are so similar that some days I can’t tell which disease I am dealing with. Below are some Fibromyalgia symptoms

Thank you for taking the time to read these awareness posts! And remember, knowledge is POWER! 🙂

World Lupus Day

 

Yes, today is World Lupus Day! Get the word out as much as you can!

Flares are a bitch. You never know how long it will last or when it decides to pop up. In high school, I always became sick with something right when school would start up in September. I wasn’t diagnosed yet but we just blamed it on bad luck. When was I diagnosed? In August, just a few weeks shy of starting college as a freshman. My mom and I can’t help but wonder if the stress of going back to school is what caused me to be sick around that time. And that perhaps, in high school I had Lupus all along.

Isn’t the common flare trigger above just crazy? But it is the truth; Lupus really restricts your life. Consider no longer being able to spend hours outside in the sun without the proper equipment such as sun block, a hat, shade and clothing that covers most of your body. Not only does the sun bother me but the heat (or humidity) as well. If I spend an amount of time in the heat, I usually need to go somewhere with cool air and nap otherwise I am basically a zombie.

That is all I can do for now. Thanks for reading! 🙂

Lupus Awareness Month

For the month of May I was going to post something about Lupus every day, but my Lupus had other ideas! All of last week I felt like crap. I was nauseated, had a fever and wicked heartburn. I got heartburn from eating peanut butter toast with a glass of water. And no, I am not pregnant because there is another part of the equation that is missing for me to be pregnant. Those symptoms sound very much like the flu, yes? That is what I deal with as part of my Lupus. Sometimes I’m not even sure what my nausea is from, it could be the disease itself or my medications.

Literally, everything is a SURPRISE with Lupus. Including when it decides to be active, or when it decides to take it down a notch. It is extremely frustrating if you are a planner, like yours truly. It didn’t bother me so much when it wasn’t too active while I held a full time job. But ever since when my Lupus became more active and it forced me to stop working, I have had to learn to fly by the seat of my pants. I have had to take one day at a time and sometimes even one moment at a time.

So NOW for the month of May, I plan on posting bits of info and/or pictures relating to my illness. I can’t promise you anything but will try my darn hardest. 🙂

 

On Facebook you can change your profile picture to help raise awareness. Yes, this is me.

 

What happens to someone with Lupus (taken from Lupus and Me Facebook page)