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

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 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.

Next Health Product!

Thursday I received my new health product in the mail. I was so excited that it was the only thing I could think of this last week. Just hearing people’s testimonies made me dream of what it could possibly do for me. And this product? CBD oil!

I noticed my friend, Jodi, posting things to her FB page about CBD oil and that she was now selling it. We started to chat about it and I told her I tried some in the past, but didn’t notice any difference in my pain/ailments.

But it wasn’t just my okay-ish experience with the product, I simply could not afford it.  After some more chat messages she said, “So I know you’ve been blogging…wanted to see if you’d be interested in doing a 30 day blog about a 30 day journey with CBD oil.”

After some major thinking I decided to go for it. And I know she wasn’t just trying to sell me something; she has a huge heart and truly wants me to feel better.

Here is the product: Hempworx

I received the peppermint flavor. The one I received in the past was from my cousin, CC, (another person with a huge heart) and that one was chocolate mint. So I had an idea of what this new one would taste like.

They do have other products as well including icy rub pain cream (which smells quite nice and does not have the hemp “smell.”), anti-aging cream, moisturizer, CBD oil for pets, and CBD dog treats.

Jodi told me the directions:

Start with five drops under the tongue and keep it there for 30 seconds. Then you can swallow like normal. Five drops in the morning right away while your stomach is empty then five more right before you climb into bed while your stomach is empty again. Wait 15 minutes before eating or drinking anything. Continue this for a week then you can change five drops to ten.

Yesterday I asked her if I had to wait the full week before I could increase as I could not tell any difference. She said that it was okay and that she herself had done the same a couple days after receiving her first bottle. Jodi told me just to listen to my body if the increase was too much for me. If it is too much of a fast change, a person might get headaches or nausea. I think it’s going okay… The key word is think. I have a headache but that is normal for this time of year. Hmmm so I am not sure if I will be able to tell if I move too fast with an increase.

This would be day four and so far there are no changes. I know it takes a while before I will feel relief but I am just so impatient! April has always been nasty to me (due to weather changes) and the last few weeks I have been more miserable than normal. I am excited about this product though!

 

Trying New Things

You know how after you vomit, you are left with that very acidic taste in the back of your throat? Yeahhhhhh… That’s what apple cider vinegar tastes like.  And how would I know? Because I have been taking some every day. Willingly. I take a deep breath and begin to chug my eight ounce mixture of water and two tablespoons of ACV while telling lies to myself over and over that “it’s just orange juice.” I don’t dare breathe through my nose as smell and taste go hand-in-hand as they use the same types of receptors (per Merriam-Webster: a nerve ending that senses changes in light, temperature, pressure, etc., and causes the body to react in a particular way.).

Some people don’t mind the taste very much and that leaves me in shock. Although, I always have been picky with my food/drinks.

For some time now, I have heard how healthy ACV is for a person, from clearing acne to weight loss (it has to be a particular brand though–Bragg, “The Mother.” See picture). Recently I read a Facebook post in a Lupus group that I follow and the person mentioned they talked with their doctor and decided to try taking ACV. They found that it helped either lessen flare time or lessen the flare in general. It could be both, I can’t quite remember (Yay Lupus Fog!). Haha. I do remember it affected a flare in a positive way. Reading that bit of info gave me the motivation to try it and see what it did for me.

I have been taking it in the morning for about a month now. However, the last week and half I have only been taking it about every other day. I don’t know how much longer I can take it! I have noticed my acid reflux and menstrual cramps are better.

A friend of mine mentioned to take it with some honey and warm it up. Tried it, couldn’t stand it. I am not much of a ‘warm drink’ person. I wish I was because it would give me more options! She also mentioned to maybe try mixing cinnamon or lemon with it. I keep forgetting to buy it at the grocery store but I’m pretty sure that I am just going to give up on the ACV.

Next week I will be trying a new product to see if it helps with my ailments so stay tuned! 😀

 

Ahhhhhh The Puppy Stage…

Even though the last time I experienced the puppy stage eight years ago with Storm, I can still remember how frustrating it was. Funny thing is, even though I remember it, dealing with another puppy is like I forgotten about it, even though I haven’t. Does that make sense? I hope so because I’m not sure how else to word that. Hahaha! Things with Benelli are going okay, I’m just not used to having a puppy around. As with a normal human baby, I don’t get the greatest sleep and I run on caffeine. It can be really difficult because it interferes with my Lupus and Fibro. But I know I wouldn’t have anything to look forward to if he wasn’t in my life. It’s just a challenge within a challenge. Haha!

Crate training is rough right now.  He screams bloody murder when he’s in his crate. And I mean he is LOUD! Yes, I have put toys in there for him. Yes, I have covered it. Yes, I give him treats right before he goes in and some once he is in it. Yes, I have put in my worn shirt so it smells like me. So far the longest he has lasted is four hours and that is because I was running errands and not having to listen to him. But, I am determined and keep trying even though he doesn’t like it.

We are still working on stairs. He can go up them but can’t figure out how to go down. I suppose it doesn’t help that I always carry him both ways! 🙂

This last weekend my niece and I took him (and my three year old nephew) to the dog park for the first time. He was scared shitless. We were even in the small dog area! 🙂 I tried not to save him and pick him up much but at times I couldn’t help it.

“Save me, Mom!”

So I am trying to get him socialized and experienced to things but I feel I need to be doing a better job, mostly on socializing with other dogs. I haven’t had a chance to bring him to doggy daycare yet but it is on our list!

He loves the leaves and of course due to his breed he can’t stop chasing them. And that includes cars. We just had our first snowfall but I’m waiting to take pics when there is more since we only have an inch or two.

I find myself wishing time away quite a bit, for him to be an adult and done with the puppy stage. But after that thought, I always make sure to correct and remind myself to stay in the present. Some days are easier than others. 🙂

It’s A Boy!

You read the title correctly! I would like you to meet Benelli!

So yes, I have a puppy not long after Storm. Honestly, I thought it would be months or years before getting another one. I was so lonely and alone. I have no one to talk/see on a daily basis since I am on disability. I am not married or have a boyfriend and I have no children. Companion pets truly do have a huge emphasis on people. I have always believed it, but even more so since Storm has been gone. The silence was deafening.

I decided to start asking questions to people that have fostered because I wasn’t sure I could ever afford another dog. And the nice thing about fostering is that you don’t have to pay for anything, they supply everything.

That soon changed as I was gifted a mini Aussie puppy! The person wishes to remain anonymous but they just have the biggest heart and I think I am still in shock.

This person sent me a message and asked if I thought I was ready for another puppy. I took some (short) time to think about it because I wasn’t sure if I was ready. How do you know you have moved through the grieving process to the point of keeping the past in the past? I am not sure if I was completely ready for another dog but said yes. How could anyone pass up a deal like that??

I waited until he was eight weeks old then brought him home. My new baby boy is a mini Aussie.  I had no clue for a name but had a couple that I liked. I finally settled with Benelli (the “i” sounds like “e”). Yes, the same name as the shotgun and yes, I chose an Italian name for an Aussie. Hahaha!

Yay first successful bath! Third time’s a charm! Haha

 

And let me tell you, it has been quite some time since I had to go through puppy/potty training! This little pup has been kicking my ass, with trying to watch out for going potty in the house to constantly playing with him to try and wear him out. Just like a human baby, sleeping in is no longer an option and I no longer have any privacy.

My Lupus is not impressed with not being able to rest much and is now pretty active. BUT, I now laugh multiple times during each day. As much as I hate it, I am constantly having to take him outside and breathe fresh air (we live in a smaller area where we do not have to worry about smog so it really is fresh air). I know he’s good for my health overall. 🙂

I am excited to start this next journey with him!

Wordless Wednesday – Kind of

The first few weeks of Storm’s absence was extremely difficult. It had been a while since something (or someone) that close to me had passed away. Some of my grandparents have passed but I wasn’t super close to them. This may have been my first real big death. And it SUCKS. It blows goats. But, as people have mentioned to me, it gets a little better with time. I know that I am certainly in a better state of mind than a month ago. I can actually talk about her now. I may be crying, but at least I can talk about her where before I just couldn’t do it. In fact, it is positive I will be crying because there isn’t a day that goes by that I don’t cry about her.

I have been spending a lot of time by myself in my home. Yes, yes I know that isn’t healthy for me blah blah blah. But I haven’t been just curled up in a ball watching t.v., I either read or color. Definitely more of coloring.

And when my mind is thinking too much I turn to reading as I am then whisked away somewhere else while being someone else. Last week, my sister asked if I could start helping her out by picking up one of my youngest nephews from school, take him home and watching him for about an hour and half. Something again about me needing to get out of my house. I don’t want to but I know she would help me in a heartbeat so I said I would a couple days a week. So I started this week and have been ill every day so far. Haha! I swear it hasn’t been intentional! 🙂

I wanted to have something with me everyday with Storm’s ashes so I pulled up Amazon on my phone. I picked out a necklace, that also doubles as a key chain. The ratings were good with a price of only $10.99. It’s pretty heavy! I like it though. 🙂 A couple of my cousins are getting me something, but I will have to post a picture once I get it.

I must admit that I have already started to look at other dogs and pets. It seems a bit early, especially with how close I was to Storm. I think having something else to focus on, will help me focus on her less. I also think Storm’s whole leg issues made me be aware that she might not have much more time with me. So maybe my grieving started early?? There were quite a few times that I not only thought she was going to die but was questioning if I should put her to sleep. Those last four to five months were literally hell for us. And as much as I loathe that she is not here, I know she is in a better place now.

Storm’s 8th birthday – her last birthday, right in the middle of our hellish months