Ariel's Two Cents

 On September 5th, I had a Pulmonary Function Test (PFT) to monitor for any lung involvement with my Scleroderma .  I am supposed to have this testing done at least once a year, but I waited over four years to get it done again.  When I got it done last time, back in 2021, the respiratory therapist was absolutely awful to me.  She was rude and disrespectful and did not have any care or concern for my issues.  I dreaded going back to the same office for this test, but I was pleasantly surprised to find it was a completely different respiratory therapist performing the test this time.   When Nina, the respiratory therapist, came to get us for my test, I started our interchange by advocating for myself, which is exceedingly difficult for me to do, but I persevered, just the same.  I explained to her that I have a lot of anxiety, claustrophobia, mental issues and past medical and sexual trauma.  I further explained that I am not trying to be dif...

 It's time for an autoimmune update post!  I saw my primary care doctor, Cassandra, yesterday afternoon.  I had to update her on so many different things that I nearly forgot half of it.  Thankfully, Michael was at the appointment with me, so he was able to make sure the things that I forgot about would be mentioned.  This is why it is critically important for support people to be allowed into these appointments.  Most of us with autoimmune disease also have some form of brain fog at the same time.  It's difficult to live with it and even more difficult to manage your chronic illnesses when you're dealing with brain fog, too. Before Cassandra left for a two-week vacation, she messaged me and told me to behave while she was away.  It was a perfectly normal comment for us as we tend to joke about my health and body always causing issues.  She always jokes with love in her heart, never to be mean, rude or disrespectful.  She knows when it'...

 It's time for an update post.  I saw my new rheumatologist today.  My friend from group took me and I was incredibly grateful for her help.  We met in Spokane, then she drove Michael and me to Coe'ur d'Alene, Idaho, to go to my doctor's appointment.  It was a nice drive with beautiful scenery.  Before today, I had never gone to Idaho.  There is currently a wildfire on the mountain out there, so we got to see a bit of that.  Scary stuff, really.  Firefighters were ambushed on that mountain yesterday.  It's made national news.   We found the medical office with no trouble at all, not that I'm surprised.  My friend knows the area better than I do, plus we had the use of technology to guide our way.  I would be so lost with my digital maps on the phone.  I get lost coming out of the bathroom.  Maps are necessary everywhere I go.  We got to the appointment quite a bit early, but I would rather be an hour e...

 I guess it's time for another update about my autoimmune life.  I've had another medical emergency this past week.  Tuesday night, I took my first dose of Carbamazepine for my Bipolar mood swings .  I had an appointment scheduled with the prescribing doctor the next morning, Wednesday.  Well, when I woke up Wednesday morning, I had a rash starting on my chest.  When I met with the doctor, we decided to stop the medication, which I had already decided that without his input as soon as I saw the rash starting.  We decided to just get back to a more natural state for now and will discuss adding a new medication on our next appointment.  He told me what allergic reactions to look for and a sore throat was one of the things that he mentioned.  I woke up Thursday morning with a sore throat and the rash was much, much worse than the night before.   After doing a bit of research, I decided that it would be best if I went to Urgent Care ag...

 I've been on the move for weeks now, but I finally managed to carve out a day for some rest.  It doesn't happen often in my life, but occasionally a day of rest will manifest itself.  I'm grateful when it does happen.  Michael is off work today and for once, we don't have any appointments to attend to.  Normally, we would have my therapy appointment this afternoon, but Lori is out of the country for the next 5 weeks, so I am kind of on my own for getting through any mental hangups that may arise.  I think Michael is enjoying not taking me to town today.  I know it gets overwhelming for him when he literally never gets a day to rest.  No human body can tolerate that for very long.  Instead, we are spending the day together and catching up on some chores around the house. I slept 9 hours last night and the night before, but my body is still screaming at me.  It frustrates me when I get a lot of hours of sleep, but I still feel fatigued....

  Painsomnia ...  Easily one of the most-hated aspects of my autoimmune life.  It hit me at 3 am today.  I woke up with excruciating pain ripping through my entire body.  My bedroom was too cold, and my blankets had been stolen from me.  I woke up to try and get myself warm again, but by then, my pain was too high, and it was too late for me to go back to sleep.  I asked Michael to help me get a cup of coffee (which he does every morning and never has an issue with it) and to grab my pain medication for me.  I keep it in what I call the "control bag" which is a medication bag with a combination lock on it, to keep everyone out of my controlled medications.  Michael doesn't even have the combination to it, so it's quite secure.  He got up and made the coffee, got my medications and computer for me, then promptly went back to sleep, which I have no problem with.  That is what he does every day.  It's our "normal" routine, so this...

 I'm not Christian, but like many non-religious households in America, we partake in certain elements of the traditions that most of us were a part of as children.  This is no different for my family.  This weekend was Easter Weekend, and although we did not attend any religious services, we did have a family get-together.  My son who has unofficially moved out, came home and brought his girlfriend with him.  We just love her to death, so this was not a problem at all!  I wasn't able to afford the traditional Easter meal, and the kids all wanted fried chicken instead, so I chose to "go with the flow" and make the meal that they all wanted.  I mean, it's not often that they all agree on anything, let alone the holiday meal, so I went with it.  Interestingly enough, "go with the flow" was my intention on Insight Timer yesterday, so it was fitting that the day went the way that it did.  I was given ample opportunity to utilize my intention for t...

Today has been a bad day for me, and I think writing about it might help me to process it.  I woke up in a lot of pain this morning.  I overdid it yesterday by going to my group therapy session, then running errands afterwards.  The meltdown first thing yesterday morning was not helpful for my spoons.  I use an app to track my spoons.  It's called Visible  and it uses your heart rate to track your activity level to help you not overdo it and cause a flare.  It also tracks your Morning Stability score by looking at vitals like your Heart Rate Variability (HRV) and Resting Heart Rate (RHR) to determine if you should have a rest day or if you have been pacing well.  This morning, it gave me a rating of 1/5 and asked me to be kind to myself today.  That should have told me to just crawl back in bed and forget all about this day.  I used more than double my allotted points yesterday, so I feel like today started with a massive deficit instead...

 Making memories with my family has been critically important to me ever since that fateful day in 2018 where the rheumatologist told me that I was dying, slowly, but dying just the same.  I stopped living my life in some ways, but in others I have kicked it up a bit.  One way that we did that was by attending a rock concert over the weekend.  My husband got free tickets to see Buckcherry , and we took our oldest son with us.  The concert was held at Michael's place of employment, so we didn't have to go too far to make those memories.  We simply had to meet my husband after his shift ended and enjoy a family night together.  My youngest son stayed home and watched the house and the dogs for us, so I didn't have to worry about that.  (My dogs have severe separation anxiety , so I can't leave them alone for very long.)   Although I had a blast at the show, there were some moments that were very trying (and a bit triggering), but I ma...

 The horrors persist, but so do I.  Every morning, I wake up in a fresh version of Hell, filled with pain, agony and lots of cuss words.  This morning was no exception.  It was barely 3:30 am when I was brutally attacked by what some of us spoonies like to call " painsomnia ", which basically means that I was in so much pain that I could not sleep any longer.  I was flaring so badly yesterday that I could not even make it to my group therapy session, so Michael was well-aware that I was feeling under the weather already.  I had to wake him up to help me get my pain medication and a cup of coffee.  He was not very happy with me for needing his help while he wanted to sleep.  My feelings were hurt, but I let it go and told him to go back to sleep while I tried writing for a while.  Well, that didn't help enough, so I needed more medication.  This time the smokable variety.  When I woke him up for help that time, I got yelled at. ...