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...

Life with BPD has gotten...interesting...to say the least.  I have struggled with it quite a bit lately, but I'm working through it.  My symptoms have seemed a bit out of control lately and my splitting episodes have been frequent.  I did go three days without a split, but that streak ended this morning.  I have been triggered by several different things lately, and I am still learning how to cope with triggers and the splitting episodes that follow.  I have been a mess lately. I had a truly awful split on Sunday night.  It may have been the worst one yet.  I don't remember much about it now, just bits and pieces.  I know that it was so bad that it pushed my husband to snap.  It made him behave in a way that he has never done in the 18+ years that we have been together.  Michael is one of the least violent people I have ever known, but he was almost pushed past the point of no return that night.  I lost my ever-loving mind and was t...

 I'm not having the best day today.  Hell, I'm not having the best week of my life.  I think I need to write about it so that I can let it go.  Writing is usually very therapeutic for me.  I don't know why, but it's always been that way for me.  I've kept a journal since I was a small child.  I always wanted to be a writer, though not necessarily a "famous writer".  Now, I'm actually writing a book!  We'll see if it gets published. I've been feeling pretty down (physically) since Friday evening.  I slept well that night.  I got almost 9 hours of sleep and almost felt rested in the morning.  Unfortunately, that was the last decent night's sleep I've gotten.  Saturday and Sunday mornings, I woke up at 3 am, bright-eyed and bushy-tailed, ready to take on the day.  I suspect a manic cycle coupled with painsomnia .  I was in pain each morning when I woke up at 3 am, so it makes sense that painsomnia had something to d...

 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...

 My mental health has been a wild ride lately.  As you likely know, I was diagnosed with BPD (Borderline Personality Disorder) last month by my therapist, Lori.  The diagnosis has hit me pretty hard and I'm still struggling to deal with it.  I still can't even admit it to certain people.  Nobody understands what it's like to get hit with a diagnosis like this.  The realization that the trauma from my childhood permanently altered my personality is a hard pill to swallow, you know?  I haven't given up on myself yet, though, so I have that going for me. I've had a busy therapy schedule lately.  I've been going at least 4 times per week.  I have two groups with Lori and a one-on-one session every week.  Then, I have a relationship group with Angela, the other clinician that I work with.  Both of these therapists have been immensely helpful for my healing journey.  Lori is my trauma therapist, and she is amazing and teaches me lot...

 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...

 I have not had the best day, and I think that a venting session might be helpful.  My day was doomed from the very moment it started.  Actually.  That is not correct.  It was doomed when I had an awful night last night.  I was in an excruciating amount of pain and that was stopping me from sleeping.  I tossed and turned and begged for help for hours before I finally decided to take a clonazepam to help me sleep.  I rarely take those tablets.  I do not care for them at all, and they cause me cardiac distress the following day.  My doctor prescribes 10 of them at a time and that lasts me about 3 - 4 months.  I'm not even exaggerating.  I pick them up when I do my quarterly pain management appointments.  The clonazepam took until around 2 am to put me to sleep and when it did, I slept like the dead until my 6:30 am alarm woke me up.  I turned it off (without realizing that's what I did) and went back to sleep until my n...

 I've been in a dark place for a few days.  I haven't been able to find the words to write about it, so I'm going to try to do so now.  I may end up deleting this for the 5,430,503rd time this week.  Who knows... Back in 2021, I was seeing a psychiatrist through MultiCare.  She was treating me for bipolar disorder but apparently, she thought that I had BPD (borderline personality disorder) , also.  She never discussed it with me.  She simply wrote it in the notes of my medical chart, clearly not realizing that I read everything that has my name attached to it.  She never had a single conversation with me about the possibility of a new diagnosis.  It was sneaky and behind-my-back and I don't like people that move like that.  I need to be able to trust my providers to communicate with me when there is an issue.  I stopped seeing her after that incident and ran from that diagnosis ever since. Last month, my meltdowns started to become...

 I had an important appointment yesterday afternoon.  I met with my urogynecologist's Nurse Practitioner, Katrina Whipple.  It was my first time meeting with her, so my anxiety was through the roof.  In fact, my anxiety was so bad that I had a massive meltdown in the morning while trying to get ready for my day.  I knew that I was going to have to tell this doctor all about my past trauma, both sexual and medical.  Both forms of trauma are pertinent to this appointment as it affects Interstitial Cystitis in a big way.  Every time I have anxiety or get upset, I have an instant bladder flare.  It's like clockwork, every single time.   When the nurse was checking me in and doing my vitals, I let her know that my blood pressure might be elevated due to my medical anxiety and past trauma.  At that point, I told her some of the minor details of my abuse by medical providers.  She was very compassionate and had empathy for what I hav...

 Hope... It's a strange concept to me, as a pessimist, to believe that things are going to be okay, yet that is precisely the feeling I have been left with lately.  Hope scares me because all too often, the good things in life have been taken away from me.  I'm afraid to grow accustomed to the good things existing in my life for fear that they may be taken away from me.  I have lived this way all my life.  I don't know why I'm like this or why I look at the world the way that I do.  It's just me and I can't help it.   Two weeks ago, I had an appointment with my new rheumatologist, and she informed me that my former diagnosis was not correct.  She corrected it to show Systemic Sclerosis Sine Scleroderma and told me that I would need more frequent testing.  The thought of more frequent testing, quite frankly, makes me sick to my stomach.  I have severe medical anxiety and test days are almost always the worst ones for me.  I just...

 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'...

 The 4th of July has come and gone now and I'm ready to talk about it.  You see, the 4th of July is usually an awful day for me.  I have complex PTSD from years of trauma and abuse.  One of the many traumatic events I went through was what I call, "The Naked City Shooting", and it has been one of my biggest problems since the day of the shooting.  Immediately after the incident, the sound of fireworks would cause me to cry hysterically, much like a small child who is terrified of something.  It was embarrassing to live life this way, but what was I supposed to do?  How do you undo the damage of trauma?  If it was simple, therapists would not have a yearlong wait list to get services.   In anticipation of the noise, I typically take a clonazepam at around 6 or 7 pm on the night of the 4th of July.  The goal is to be so sedated that no noise wakes me up.  This usually does the trick, in conjunction with my other nighttime medic...

 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 had an awful start to my day, and it has left its mark on me.  I only slept for about 3 - 4 hours before I woke up with a bout of painsomnia, which is one of my most hated symptoms.  Painsomnia steals my sleep, my joy and my peace all in one swoop.  Today's episode was compliments of sleeping on my stomach, which causes severe back pain for me.  When I woke up, I could not feel my hips or parts of my legs.  I could not get up and out of bed to make my coffee, use the restroom, find my pain medication, or anything else that I might have needed at the time.  I did the only logical thing that one can do at 3 am in an emergency and I woke up my husband.  He begrudgingly got up and out of bed to help me.  Neither of us were in a particularly good mood at that ungodly hour, but he still made the coffee, got me my medication, then promptly went back to sleep.   Normally, I would spend the next few hours working on a writing project or s...

 I guess the third time will be the charm because I discovered that I am having a reaction to yet another medication.  It's the strangest situation, I'll tell you.  I wear the Visible armband to help me track my activity levels and how they affect my chronic pain and chronic illnesses.  It works wonders for me and at this point, I have to say that using the device may have saved my life, in a way.  The device works by tracking your heart rate and heart rate zones.  It gives you points for the activities, and the goal is to stay under a certain number of points.  Well, I was not earning any points during any activities because my heart rate was in the 40's and 50's.  I started some medications for the second allergic reaction, and the Famotidine has a rare side effect of Bradycardia and if you know anything about me, you know that I always get the rare side effects and reactions.  I'm just lucky like that.   I had to do some resea...

 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...