Time for Change

Hello! I wanted to write a post months ago and never finished it. I usually like to write out my posts ahead of time but figured I would wing it this time.

So, time to be vulnerable and open about myself. The last five years of living alone, I haven’t shown myself much self love. I am the heaviest I have ever been and part of that is because of my Gastroparesis. Well, a lot of that was because of it, because my stomach couldn’t handle most foods. So I basically have been eating nothing but carbs as it is the only thing that doesn’t upset my stomach.

Since the beginning of January of this year, I have decided to start taking better care of myself. I started with Nutrisystem so I could lose some weight. I lost 20 pounds! 😁

Their system is basically (if you’re a woman) your first week you are only allowed 1,000 calories a day. Starting the next week, you go to 1,200 calories per day.

Their meals are okay taste-wise. I am super picky so I only liked two of their meals. Haha! But I ate the food anyway.

I am now trying something different with my diet, counting macros. “Macros” consist of meeting a certain number of grams for carbs, fats and proteins while staying near/at a certain level of calories. Counting macros is a different way to lose weight by eating the calories your body needs. When I was eating 1,200 calories a day, that was/is a very painful way to diet. It’s not very much food and I was always hungry. Now, I eat almost 1,600 calories per day and am still in calorie deficit in order to lose weight. My daily macros goals are: fat 55 grams, protein 130 grams, and carbs 159 grams. It’s a very SLOW process, the scale hardly moves for me. But you know what? My clothes are fitting me a little differently than before.

If you are curious about macros you can visit here then look for their calculator.

I also decided the covid virus has slowed down enough to go back to the gym! Plus, it helps that I finally got the vaccine. But I am very happy to be back to exercising! About a month ago, I also got reacquainted with weight lifting. It’s been years since lifting weights and I forgot how much I love it.

I hope you all are doing well! Benelli says hello. ☺️

*I am not getting paid by Macros Inc for this post

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!

Not Lupus?

A few months ago I had a not so normal eye exam. The optometrist noted an irregularity with one of my tests that I take for my main Lupus medication, Plaquenil. That meant the medication was starting to effect my eyes. So my new rheumatologist had me see an eye doctor (ya know, because they want to make sure to see a “M.D.” behind the name) and go off the medication. The new eye doctor said it looked fine so I’m back on the medication for the time being. I go back in for another round of tests to make sure everything is still okay at the end of October.

I decided to change my rheumatologist as I felt my current one wasn’t working enough for my health. I told my rheumy about my symptoms of my Gastroparesis (my stomach is not working properly) and she never bothered to look further into it or to send me to a GI doctor.

The first meeting with my new rheumy went well! He also is seeing my sister for MCTD (Mixed Connective Tissue Disease). It was a relief because I had a “feeling” that he would tell me that I didn’t have Lupus, but have what my twin has.

The second meeting with my new rheumy soon came up and my view on him suddenly changed. He told me he didn’t think I had Lupus but I had a disease called Sjogren’s (sounds like “show grins”). He said the Lupus marker never showed up on my blood work but came up on the Sjogren’s marker. And the Sjogren’s marker can mean the person has Sjogren’s…or LUPUS! Think about that for a moment. He kept asking if I had any seizures or heart attacks and I replied with a no. I think he is having a hard time believing that I have Lupus because I haven’t had one or the other, but the thing is having one or the other is NOT a prerequisite for Lupus! So he ordered a bunch of more blood work. I see him again at the beginning of October but wasn’t sure if I wanted to. Suddenly after 20 years I just don’t have Lupus?? Plus, I have had three different doctors tell me that I have Lupus. So at my next appointment I am going to talk to him more of why I “don’t have Lupus.” I didn’t get any of my thoughts/opinions out when he mentioned this shocker because I was so dumbfounded on what he all said. If I’m not satisfied, I am going back to my other doctors that believe that I have it!

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

F*cking Fibro

Since I normally have insomnia, I love sleep. I love bedtime. I know to enjoy it when I get sleep because there is a good chance that I won’t get any the next night. However the last two to three months, I have hated sleep because my whole backside ends up in such pain every night. I wake up with a headache EVERY morning and the intense pain radiates down my neck and continues all the way down my back.

At first I thought it might be my new mattress, but it was past the return date so I couldn’t bring it back. I did some more thinking and also thought it could be my Fibromyalgia. I know talking with one of my aunts that she no longer sleeps in a bed because of her Fibro pain.

I decided to experiment one night and slept on my new couch, which mind you, is a comfy couch during the day. I found when I woke up, I had the same familiar pain. So I know it is my Fibro. This is the first time I have had issues from my Fibro and sleeping. After talking to a friend that also has Fibro, she mentioned she has dealt with the same issue and a zero gravity chair works great. So until I can save for a zero gravity chair to sleep in, I need to figure out something else.

On Monday I saw my family doctor and we decided it would be best to up one of my doses instead of adding another new pill to the mix that I already take. It should be at least a couple days before I can tell if the extra pill is working or not. So now I wait…

Day Twenty-Nine

What a week! I had a very busy week so I was not able to blog. I have been slowly increasing the number of drops every day; tonight I took 18. I know it will be a little over 30 days until I am finished with the bottle, since I haven’t been taking the full recommended amount of drops per day. *Fun fact: there are 1,000 drops of CBD oil in a Hempworx bottle.*

One thing I have noticed is that I feel better when that special time of the month comes around (Men: skip the rest of this paragraph). I still get cramps, but they are soooooo much easier to deal with. Another plus is that my nausea isn’t as bad compared to when I’m not on the CBD oil.

Another thing that I have come to realize is that my IBS (irritable bowel syndrome) has calmed down. Don’t worry, I will spare you the details! 😄 Haha!! Just believe me when I say it helps with that issue.

A couple days ago, my arthritis in my left knee was letting me know that rain was coming. With an achy and painful knee, I had to completely use the rail along the stairs to be able to get to the top. I’m talking putting what weight I could on the rail while using my arm strength to pull me up each step. When I finally got at the top of the stairs, I took 3 drops of the CBD oil and rubbed it on my knee. I then went to lay down and found out an hour later that it helped! 😃 I still had some pain but it was much tolerable, plus I could actually walk!

I’m dreading when this bottle becomes empty because I can’t afford to purchase it. 😞 I don’t want to ask my parents to help because they’ve done enough for me. I’m not looking forward to once again dealing with the full force of my ailments.

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.

Day Thirteen

Today I am feeling okay but that hasn’t been the case the last couple days. Of course when I write about my acid reflux being more tolerable what happens? I get heartburn for three days! I was feeling pretty bummed about it at first but as the next day came, I became relieved. It didn’t get as bad as it normally does. Granted yes, the only thing I had to eat before the discomfort was breakfast (peanut butter toast and water), but it was much lower on the pain/annoyance scale. That makes me happy. 😊

That is all I have for now! I am hoping to increase my drops soon!

Day Ten

I have horrible acid reflux. A few months ago, I found out that acid reflux can actually be a symptom of Lupus. I think back to my younger middle school days dealing with heartburn and it finally makes sense.

I’ve tried using over the counter meds (example Prevacid, Nexium, etc.) for the problem but they wouldn’t work. I was put on a prescription for it and that finally gave me relief. However every so often, around when my Lupus is more active, something as simple as peanut butter toast with some water to drink, can make me feel miserable.

Last night I ate something that is normally bound to give me heartburn. Then I ate something else bound to give me heartburn on top of that. I expected to feel lousy today (well I do but for other reasons) but much to my surprise, I have no heartburn! I’m not sure if I am just lucky or if it’s the CBD oil working. I think it’s the CBD oil! 😉

Today I am dealing with joint and back pain but I think the oil works on the “smaller” issues first, while it helps the “larger” issues the longer you take it. But I don’t know if that’s how it works, just guessing.

CBD Oil Update

So it has been a week since blogging last and truthfully I wanted to blog a few days ago but I have been dealing with some intense head pain. At first I thought it might be allergies but now I am wondering if it is my TMJ (temporomandibular joint) syndrome.

My symptoms include a very “sharp” headache that gets worse if I move or walk. I also am dealing with earaches and neck pain. The neck pain starts at the very top of the neck, actually a little past where it connects to the back of the head, then ends at the base of the neck. I also would describe this pain as “sharp.” The neck pain isn’t the muscle, like how I would describe my Fibromyalgia. But feels like a line that I can feel inside my neck.

Tuesday I thought I would experiment with the CBD oil. I placed one drop errrr I should say, carefully balanced a drop on my finger then massaged my forehead, the backside of my neck and in one of my ear canals.

Maybe five minutes later, most of my headache was gone. It gave me relief for two or three hours.

My earache pain was soon gone and didn’t return at all until the next day! My neck pain stayed the same and I’m guessing it is due not enough strength/drops that was used.

Other than mildly helping my head pain, I noticed that I have been sleeping better. I still can’t fall asleep right away but once I fall asleep, it turns into a DEEP sleep. I explained it to my mom as when you wake from a deep sleep, expecting you only have an hour left before your alarm goes off only to find out you have only slept for two hours and still have the rest of the night for more sleep. Surely you all know what I’m trying to describe. 😊

Jodi and I both agree that it unfortunately might take me longer to see results due to all the toxins in my body. I feel frustrated with knowing that but it is what it is…