Well, fuck! (Part Five)

I am going to wrap up this sick series with this post because reliving that time in my life has been hard in so many ways – much harder than I anticipated when I decided to put it in words – and has resurrected some really negative feelings.

It felt like months passed between arriving at my parents’ house and seeing a dermatologist. But, in reality, it was less than one week. Once confirming that I did have bullous pemphigoid, the dermatologist in Jacksonville sent several prescriptions to our local pharmacy so I could begin treatment right away while awaiting the appointment with the local dermatologist. Unfortunately, bullous pemphigoid is so uncommon that there is no definite “THIS is what works” treatment plan. Treatment, at least in my case, consisted of several trial-and-error attempts before seeing results. A few weeks (and several nausea-inducing, ineffective, expensive meds later), the second dermatologist got results. With a combination of very strong steroids (along with secondary medicines to counter the damage that months of steroids were doing to my body) and immunosuppressants, new blisters finally stopped forming and the existing blisters stopped growing and, eventually, ruptured on their own or were punctured and drained by my husband. As that happened, things slowly became a little less dark because I could finally see an end.

After what felt like a year (but was actually about two months), my skin was finally itch-free and, basically, clear again. “Basically” because I still have (and probably always will have) lingering scars to remind me of that period of my life. I did have a few (two, I think?) rogue blisters surface in the weeks following the clearing. Each one threw me into a pretty severe emotional spiral but, luckily, cleared up with no major problems.

Two times in December of 2019, I travelled a few hours to a cancer treatment center to receive infusions of Rituxan – an antibody drug used to attack cancer cells. While bullous pemphigoid is an autoimmune disease, not cancer, there has been some success with Rituxan for the long-term treatment of bullous pemphigoid. Agreeing to the infusion was difficult and took weeks of mental back-and-forth. Rituxan has the potential for major, potentially life-threatening, side effects. It is actually strongly advised that, prior to the infusion, the patient be given a steroid to counter the likelihood of an allergic reaction to the medication. For the first infusion, my dermatologist (never having assigned this medication for a patient) declined the administration of steroid (because of the long period of time I was on it previously). As a result, I had a pretty scary (face swelling, throat closing) allergic reaction about 3 hours into the infusion. Luckily, it was caught quickly enough to not escalate to a serious problem. The infusion was paused, steroid was given, and the infusion was re-started with no additional issues.

Due to the seriousness of potential complications, I am undecided on whether or not I will continue the infusions at this time. Following the two I had in December, I am supposed to get another this December (2020) and then every six months for the rest of my life. From my understanding (founded in lots of obsessive reading and discussions with doctors), once you have bullous pemphigoid, it never goes away. The blisters are gone, but the possibility of another flare-up is always there – lying dormant. At any point, my body could, once again, decide that my skin is a foreign object and viciously attack it. But, on the other hand, it is possible that I will never have another outbreak (even without treatment). For that reason, I am leaning toward not following the Rituxan schedule that has been suggested to me. I am now on several anxiety medications (and have been for almost a year) which have allowed me to have a much more relaxed mindset. I now know the (albeit rare) horrible effects that prolonged severe anxiety can have and, as a result, I am way more responsive when I feel myself getting anxious. I now practice calming techniques as needed and, if anything starts to feel like “too much”, I contact my doctor immediately to discuss tweaking of medications.

If the events of the summer of 2019 do begin to repeat, I now have a much better understanding of what it is and how to counter it before it reaches the point it did over a year ago. And, if it happens, that recurrence will likely lead me to re-evaluate my Rituxan decision and commit to lifelong infusions. In the meantime, I am focusing on being my calmest, best self.

Well, fuck! (Part Four)

After leaving the dermatologist’s office, I returned to the hotel and filled my husband in on the visit. At that point, we agreed that we would, obviously, be putting the travel plans on hold indefinitely. We quickly decided that our best option at the time was to talk to my parents about staying with them (to which they immediately agreed). That would give us time to figure everything out and see a dermatologist local to them while going through the lengthy and horrifying process of this new, rare disease that would be controlling our lives for months to come. While I wanted to stay close to the dermatologist I had just seen in Jacksonville while we awaited the test results, the ever-increasing steroids I had been on for over a month at that point were producing a scary side effect: my eyelids and the surrounding area (along with the rest of my body) were swelling and I had no way of knowing how that would begin to impact my vision. Since I am the only driver currently, that was not something we could risk. And I could practically see the blisters actively expanding, so I knew the car ride would be less comfortable the longer we waited. For those reasons, we started packing immediately with the plan to leave first thing the next morning.

To say the drive sucked would be a massive understatement. The blisters were on my hands, arms, and feet at that point. I would say they were huge but, as I sit here after going through the whole process, I almost laugh out loud – if they were huge at that point, there is no word in existence that would describe what was to come. I also learned on that 2ish hour drive that fluid-filled blisters do not respond well to sunlight (the fluid heats causing pain and discomfort)…and, on that summer day in the south, there was a lot of sunlight.

We finally made it to my parents’ house and I fought back tears as I explained everything. Afterwards, I went to the bedroom where I would spend most of my days for the next month and cried. That month was the darkest of my life. I spent sooo much time in that bed in the worst depression I have ever experienced. All I did was alternate between sleeping, watching TV, and watching blisters grow. Moving hurt. No position was comfortable. Blisters grew everywhere – EVERYWHERE!

Meanwhile, my husband flew into action as soon as we arrived there. He handled all of the calls and appointments. We, of course, got confirmation that what I had was bullous pemphigoid and he quickly found a dermatologist close to us. He kept me medicated on schedule. He gave me bleach baths to prevent infections – THE. MOST. PAINFUL. EXPERIENCE. OF. MY. LIFE. He fed me – my hands were so blistered and swollen that I could not even close them enough to hold utensils.

During that time, my husband was pretty much the only person I could bare to see because I was so SO depressed – and, honestly, I think that was only because I needed the help of another person to survive – literally. If not for that, I don’t think I could have faced him either. Having to see or talk to anyone made me feel like crying. I don’t do well being helpless and/or appearing weak. So seeing/hearing any hint of pity or concern was too much. I didn’t even want to see my son. I was supposed to be taking care of him, but I couldn’t even take care of myself. It was so unbelievably hard.

To be continued…

Well, fuck! (Part Three)

Bullous pemphigoid: an autoimmune disease in which your body basically decides that your skin is a foreign object that must be destroyed. It tends to begin as itching and, after about a month, the blisters arrive. There is no definitive cause, but medications, skin irritants, and stress are suspected causes.

STRESS! That thing I had been experiencing at an insane level for months! That was it! It sucked…realizing that I had a horrible disease with a painful, lengthy, and uncertain future…but there was finally a diagnosis! I 100% had bullous pemphigoid and we were going to get it figured out! The ER nurse said she was admitting me because they had a dermatologist on staff. I didn’t get a room until the next morning because they were super busy, so I was put in a “quieter” ER area while I waited. But, despite the constant ER noise and the numerous wake-ups for blood draws and meds, that was the best sleep I had had in months. I had an answer. Things were going to be okay.

Then, once in a room, I met the attending doctor. The guy who, over the next 2 days, would rip that small amount of hope away. First, I was informed that the ER nurse had been mistaken. There was no longer a dermatologist on staff. Okay. That was fine…we could still get the tests done to confirm what I and the ER nurse knew I had, right? Wrong. The attending doctor informed me that he *knew* what I had. Poison ivy. Despite not going into any wooded area, I 100% had poison ivy. And, given that it had been ongoing for months and had not responded to treatment, it was clear that I had been re-introducing poison ivy into my life. No tests were done. Well, correction, LOTS of tests were done. Lots of blood was taken. Lots of results were spouted at me. But no tests were done to confirm or rule out bullous pemphigoid. I was completely shut down. I KNEW I had bullous pemphigoid. I KNEW it was only going to get worse without treatment. But no one would listen. The discharge nurse suggested I leave their hospital and go directly to another one 30 minutes away. Which is exactly what I did. THERE, I was told that, while they would not be admitting me, they had called a dermatologist just a few blocks away and they were expecting me.

I arrived at the dermatologist’s office in tears (and realized I was becoming a natural at this whole ‘public crying’ thing) hoping they would listen but expecting they would shut me down like the hospital doctor. However, after some skin scrapings and a biopsy I was sent away with this: “We will, of course, have to wait for the results to confirm, but I am pretty sure this *is* bullous pemphigoid. The next few weeks will not be easy. It will get worse before it gets better. but we will get you better!”

To be continued…  

Well, fuck! (Part Two)

It began as tiny red bumps on my arms. Constantly itchy. No over-the-counter creams or pills worked. After a week and a half, I went to the ER. Contact dermatitis, they said. Take these pills, use this cream, it should go away within a few days. I had *maybe* a day of mild relief before the itching came back more aggressive than before…and brought more spots with it – this time on my torso. Four days later, I was crying in bed at 3 a.m. because of the itching. I woke my husband and told him I was going back to the ER. Eczema, they said. “You weren’t given strong enough steroids the last time.” Got a steroid shot and a stronger dose of steroids and was told it would for sure be gone after the round of steroids was complete. False. After brief relief, again, the itching and spots came back more aggressively. Instead of tiny red spots, I had huge red patches. And raised areas on my wrists. And, now, it had spread to my legs.

With two failed ER trips behind me, I decided to try a different approach. I downloaded one of the many telemedicine apps and began a consultation with a dermatologist. There, I was prescribed several more medicines: one for scabies “just in case” (even though the ER doctors had already taken a scraping and ruled that out) and even stronger steroids. This time, I was also instructed to do wet-to-dry wraps on the wrists. This helped a little. Briefly. I met with the dermatologist again. More medicines. At this point, I was also doing any and everything suggested on the almighty interwebs. Oat baths. Bleach baths. Various creams and oils. Anything that anyone claimed worked for their great-cousin’s best friend’s grand-sister. In hindsight, that was probably a terrible idea. But I was desperate.

At this point, we had officially started our travel journey. We had stored our important possessions, loaded our SUV with travel necessities, sold everything else, and left Tallahassee, FL (where we lived) for Jacksonville, FL, the first stop on our trip. MOSH (Museum of Science and History) had a dinosaur exhibit that our son was excited to see. The morning we woke up for the museum, I realized I had developed blisters on both wrists, arms, and toes. We went to the museum, as planned. Halfway through, I sat on a bench while the husband took the kid to do dino thangs. I’ve never been a “public emotions” kind of person, so that may be the first time I had ever cried in public. While sitting there, I felt SO hopeless. I had a mystery rash, no answers from the many medical professionals I’d seen up to that point, and now blisters. They were on my TOES, for fuck’s sake! Do you know how painful it is to walk with blisters on and between your toes?! When husband and son returned, we decided that I would drop them off at our hotel and return to yet another ER.

At that hospital, I got the first answer that made sense: bullous pemphigoid. The ER nurse told me how rare it is and how, when it *is* seen, it is almost always in geriatric patients. “While it may sound crazy, I think it’s that.” Before she even walked away, I was googling this rare, old-person disease.

To be continued…

Well, fuck! (Part One)

I’m back! What a whirlwind it has been!

One day, during the summer of 2019, we (husband and I) had a crazy conversation…I’m not even sure which one of us suggested it now…we have fantasized for years about taking our homeschooling adventures on the road. We had a plan of getting an RV or a truck/camper combo…but that plan kept getting sidetracked. Because life. So, on that otherwise normal summer day, one of us blurted out: “Let’s just do it! Stop waiting!” We had no way of knowing when we would ever be in a position to fulfill the RV/truck and camper dream and there was a chance that it would NEVER happen. Again, because LIFE! It started as a joke. Sort of. Like a “unless you gon’ do it” kind of thing. It quickly snowballed into a “WE ARE DOING THIS!” plan for adventure! The three of us (husband, myself, and seven-year-old) were going to not renew our apartment lease and we were going to spend a year (at least) traveling. We were going to camp when conditions were nice and stay in hotels/Airbnbs when needed. We were also looking at house/pet-sitting websites as a loose guide to plan our journey…free-ish stays while also having animals to snuggle?! Yes, please!! It was going to be GREAT! Scary, but great.

Over the next few months, we did the obvious back-and-forth: “Are we really doing this?!” “Is it crazy?!” “Is this a bad idea?!” Most of those questions were posed by me and led to my husband having to talk me down. Not sure if I’ve mentioned this yet, but I’m a catastrophizer…meaning I play through every possible worst-case scenario when making decisions, planning trips, existing in any given day, etc. And I catastrophized the hell out of THAT plan. How could I not?! Animal attack. Creeps. Murderer. Car accident. Falling off of a mountain. That’s just a minute example of the scenarios I played out in vivid detail. Multiple times a day. On loop. For months. Most of it stayed in my head. Some seeped out. At least once a day, I’d blurt out a random fear (likely one that we’d already ‘worked through’ several times) to my husband. And, each time, he’d talk me through it. Repeat. FOR. MONTHS. Sleep felt non-existent. I felt like I was on auto-pilot. My mind was constantly spinning. I, the catastrophizing, forever-spiraling nutjob, had never experienced that level of anxiety for that long of a time.

Then, mid-July, the itching started.

To be continued…