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...

 As you know, I have been working on getting all of my yearly Scleroderma tests done and taken care of.  It's not been easy for me to get these done with my extreme medical anxiety.  The most "normal" test will give me days and days of anxiety, even if I know it's going to be a simple and painless procedure.  Poor Michael doesn't know how to calm my anxiety down, so he does nothing at all, which makes it a bit worse.  At least he tries to be there for me.  That's more than some people in my life will do for me. The HRCT scan was scheduled for August 15th.  I had to reschedule it several times over the last month due to my anxiety and scheduling conflicts.  I finally got it done on that date.  It was a day that I had therapy group prior to my scheduled test.  I went to group and hardly said a word the entire time, mainly because my anxiety was through the roof.  I'm good at masking, so most people don't even know to ask me if I'm o...

 When you have a disease or condition like Scleroderma , you must keep up on yearly testing.  There are several different tests that are required for proper monitoring of the disease.  Yesterday, I completed my yearly echocardiogram at Pulse Heart Institute in Spokane, Washington.  Well, this test is supposed  to be done on a yearly basis, but I have extreme medical anxiety, so I waited four years to get it done after the first one.  Testing is difficult for me for many different reasons, the main one being I absolutely hate to be touched by anyone, for any purpose.   The echocardiogram was scheduled for 4 pm, after my therapy appointment.  I had two hours in between appointments, but I didn't have much to do, so we went and had a Frappuccino before we went to my echocardiogram appointment.  I used our coffee date as a time to prepare myself mentally for what I had to put myself through.  Any test that requires me to remove my clo...

 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'm not having the best day, so I think a venting session is in order.  Nobody pissed me off this time, besides my pain levels.  I woke up this morning with a lot of joint and muscle pain.  I'm assuming that it's another Fibromyalgia flare and I hate those worse than the other types of flares that I get.  A Fibromyalgia flare is difficult for me to ascertain as the pain and other symptoms are exceedingly similar to a Scleroderma flare .  It's difficult to keep them all straight on flare days.  It's a sad existence because when one disease or condition is not flaring, there is always another condition starting a flare.  I never get a day off from my autoimmune life. I didn't go to sleep until late last night and I'm sure that is affecting my pain level.  My pain is always higher on days with less sleep.  My body seems to need at least 8 - 9 hours of sleep to combat my autoimmune diseases, but I rarely get that these days.  I have ...

  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...

  Scleroderma .  A hard word to pronounce.  A hard disease to live with.  The word, "Scleroderma" literally means hard skin.  It is a disease which causes excess collagen production, which then leads to hard skin in various areas of the body.  Scleroderma does not just affect the skin.  It can also affect several organs and cause fatal complications if not closely monitored.  Knowing this makes it downright terrifying to be without a rheumatologist , or a doctor of autoimmune and rheumatological diseases.  My previous rheumatologist dumped me back in December.  I had seen them for a check-in during the month of November, and they never said a word about losing the contract with my insurance company.  They didn't even bother to mention that there were contract renegotiations going on, so imagine my surprise when I got the call in December 2024 that they were no longer going to be caring for me.  I was blindsided.  To furthe...

I overdid it yesterday.  I am paying for it today.  This is life with chronic illness.  Most people don't have a clue of what it's like to live with a painful, energy-limiting illness like Scleroderma , POTS ,  Long Covid or chronic fatigue .  I have all four of those and struggle daily with the symptoms these diseases cause me.  I woke up in a flare so bad that I had to cancel my plans for today and I hate when that happens.  I hate to miss out on my trauma group because I learn so much in there, but some days, my health needs to be the priority.   I tend to feel guilty when I have to cancel plans.  It's frustrating that my body doesn't cooperate with me and it's also kind of embarrassing when it fails.  I choke on water and fall on flat ground.  I feel like a walking comedy show placed here for everyone else's entertainment.  I avoid going certain places because of these deficiencies.  I'm always afraid to agree to...

I've had time to sit with some heavy emotions since yesterday, but I think I'm doing better today, at least somewhat better.  I did some research and spoke to a friend who knows more than I do about HPV .  My conversation with them was extremely beneficial for my mental health.  My tests are negative for HPV-16 and HPV-18 , which are the more concerning strains.  I feel better knowing that.  With the way my tests are looking right now, I might be okay, but I am still going to pursue the hysterectomy .  I am currently looking for the information I need to start the process.  My primary care physician, Cassandra, is already on-board with anything and everything that I need help with.  She is, by far, the best doctor I have ever had, and I've had a lot of doctors over the years.  She listens to her patients, and she does not gaslight them at all.  She has never made me feel any kind of negativity from her, either.  She is just a joy t...

 As some of you may already know, I have an autoimmune disease called Scleroderma .  Scleroderma can be fatal, so it is imperative that I continue to be monitored by a rheumatologist, plus other specialists.  Scleroderma can affect several different organs, so the list of specialists can add up after a while.  I will require this monitoring for the duration of my life, however short or long that may be.  So, imagine my surprise when I received a phone call in December informing me that my rheumatologist's office, Arthritis Northwest, is no longer accepting my insurance, Molina Medicaid.  I was given the phone call with less than a month's notice that I needed to find a new provider.  Now, in my town, there are only two rheumatologists... the one I was seeing and one through Providence, and they will not see me because I am a MultiCare patient, not a Providence patient.  Cue my anxiety! Living with Scleroderma is scary enough without losing the onl...