I have to admit, I never understood why people had extra emotions surrounding the date of something bad that happened. I was so incapable of empathy that I think I mostly felt people were making a bigger deal outwardly than it really was inwardly. I figured they just did it (looked sullen and heavy hearted) out of obligation. As I now embark on what will be an entire month of these negative milestones….I have come to learn that most likely, as it is for me, the opposite is true. Whatever might be expressed to the world, is such a small fraction of what is felt internally. I’m not even sure if what’s happening on the inside could ever really be accurately communicated anyway.
I will do my best to remember how lucky I am that the process can be measured in a few short weeks (not the years so many others had to endure to end at the same answer, but in much worse condition). I will also do my best to understand that sadness comes, whether invited or not, and that it is ok to feel sad….even if I am doing better than anyone expected.
Much of the time I feel like a fraud. When I dress up and have fun or I’m productive and carrying on like nothing ever changed, I feel like I’m just pretending to be/look/act normal. When I’m not feeling well or taking my meds, put on my oxygen cannula, park in my handicap spot, I also feel like a big fake. Like all those things are just a bunch of props instead of things I really need. It is as if I still haven’t really been able to merge all my realities into one so no matter which one I’m experiencing I can’t help but feel like there is some sort of lie involved. Even though logically – I know both of these realities are true for me….I just wish I could get my mind to wrap around it enough so that I don’t feel like I’m betraying one part of me for the other. Everything happened so fast. In many ways, I’m still trying to get used to my new life…which has continued to change over the last year.
So in lieu of continuing to try to gush out all my emotions onto this blog, I will simply take a moment to remember the pivotal moments during that month last year.
October 16th: Saw Quack Doctor for severe shortness of breath
I had joint pain and was having difficulty breathing, but due to the King Fires happening, breathing issues seemed to be happening to everyone. On this morning, I walked down my stairs and across the living room and stood at the island in my kitchen gasping for air as if I’d just run full speed for miles and miles. Realizing the fires had been over for 2 weeks, I burst into tears realizing that this was NOT normal and sought out a doctor.
Unfortunately, I was new in town and didn’t know where to go. I went to a person I now refer to as Quack Doctor. I had written on my intake form that I had bilateral wrist pain, worse in the one I use the least and was taking 3200 mgs of ibuprofen which was doing nothing for the pain. I told him I was having trouble breathing. I also told him I was a former smoker. He immediately diagnosed me with emphysema and told me he needed to do a chest x-ray to see just how much damage I’d done to myself.
He then came back and muttered that my chest x-ray was clear (unfortunately, being the quack doctor that he is…he did NOT send the image onto an actual Radiologist, which would have recognized the issue in my lower lobes). He then gave me a breathing treatment. When finished I informed him that it didn’t make any improvement in my breathing….so of course he decides the best course of action is to prescribe me an inhaler. He then told me to call him if I start coughing up anything green, and he’ll prescribe me an antibiotic.
For the services of misdiagnosing me with emphysema, for incorrectly reading my chest x-ray as clear when it wasn’t, for my ineffective breathing treatment and inappropriately prescribing me an inhaler…I had the pleasure of paying him $550 for his services.
October 21st: Went to urgent care for severe joint pain and shortness of breath
My joints were really bad off, but I was convinced it was carpal tunnel and was awaiting an appointment with an orthopedic surgeon. I started to suspect I was wrong since it was my left that was worse, which would be unusual given I’m right handed. That morning I dropped my three year old off at preschool. As I was trying to buckle my 1 year old into her carseat…it was a near impossible task and took all the pain endurance I had to complete it. Once done, I retreated to my driver’s seat and sobbed in excruciating pain. (Keep in mind, I’ve had 3 pain med free deliveries, I’m not a wuss when confronting pain.) I decided right then….I couldn’t wait to see someone, this is obviously not normal…and I’m still not breathing right.
This was the first time I met the person that would become my regular physician. Unfortunately, I told her I’d just had a chest x-ray and was told it was clear. While seated, my oxygen levels were always normal (high normal even) and I’d had some low grade fevers, but nothing that most would be all that concerned about. She put me on a week of tapered Prednisone, gave me a shot of an anti-inflammatory and ordered a number of blood tests.
The first few days after the appointment I felt AMAZING. My wrists didn’t hurt and my breathing was improved (not perfect, but comparatively it was pretty dramatic). At first my labs were coming in looking really good and she was hopeful that I had a virus that was mimicking an autoimmune, but would pass in 6-8 weeks.
Thankfully, she recognized the possible autoimmune angle and one of the tests she ordered was an ANA, which is a general blood test for autoimmune disease. She called me with the results and it turned out it was positive with a very high number.
October 28th: Return to urgent care for continued pain
I came back in with continued pain – I thought maybe it was that shot that had helped (later I realized it was the Prednisone – but only at the highest dose).
October 30th: Return to urgent care for severe shortness of breath
I had another “scary episode” of not being able to breath. My doc wasn’t in that day, so I saw one of her colleagues. He prescribed me Prednisone again – this time a 2-week taper schedule and also an antibiotic…just in case. He also assured me that I should ALWAYS come in for shortness of breath that it is always a serious symptom. I remember crying to my husband that night because I kept waiting for someone (preferably a doctor, but not a quack one) that everything was going to be ok or that what I was experiencing wasn’t a big deal….but no one was reassuring me in that way (for good reason, it turns out). He told me to follow up with my regular physician when she returned.
November 4th: Follow Up at urgent care
During my follow-up, she did an EKG and repeated the chest x-ray. She also thought the x-ray looked normal, but also said she was sending it over to the hospital for a radiologist to take a look just in case. She also made orders for an echocardiogram and a possible followup for a chest CT depending on what the x-ray and echo showed.
November 6th: ER
On this morning I woke up doubled over in pain. I don’t want to have to get too graphic here, but I was naked, on the toilet screaming for my 5 year old so she could alert my husband who I could hear was in the shower. It was very scary. I texted my doctor and in the end we decided I should go to the ER. She was great enough to call into them to explain I was coming and what my current history was.
The ER doc was amazing and as he looked for things like C-diff. He called to see if I could go ahead and get that echocardiogram in while we awaiting the results. They did. Then when nothing was found with the test they were doing for my current abdominal pain issue, he asked me what I wanted to do. He said we could just wait and see if it goes away or I could find out for sure what’s going on with a CT of my abdomen. I told him I couldn’t take any more unknowns…to please let me have the CT. He said he agreed with that decision and since I had an order for a CT for my chest on file – we would do both at the same time.
After all those tests, the ER doc came back and sat down on the side of my bed. He said, we found the cause of your pain…it is a ruptured ovarian cyst. Which sounded bad to me and I had been watching too much Grey’s Anatomy during that time and I imagined being immediately wheeled into emergency surgery. So I asked him what the good news was. He quickly told me that WAS the good news. He said that the echocardiogram found Pulmonary Hypertension most likely caused by the lung issue and that the CT of my chest showed the issue I’ve been having with my lungs.
He never said “lung disease” to me. I imagined all this would be taken care of with the right (short-term usage of) meds. I was happy they could see the issue. To me that meant we could now solve the issue. It still never crossed my mind that this was going to be a life-long problem.
November 11th: 1st Rheumatology Appointment
I met my new doctor. He was young (younger than I am) and hadn’t yet passed the Board (not that he failed it, just hadn’t taken it yet…it was scheduled for that December). He spent a very detailed one and a half hours with me. I described every symptom I have ever had in 20+ years. He then ordered about 15 different tests and said we would be in touch by phone after my Pulmonologist appointment. He told me autoimmune diseases were often very difficult to diagnose and that he was very interested in hearing what the Pulmonologist had to say.
November 12th: 1st Pulmonology Appointment
I was the last appointment of the day. The Pulmonologist had actually been discussing my case via phone from his Hawaiian vacation with my primary doc. I assumed that I would come in, repeat my story and he’d order another set of tests. Instead, these are the words that he said to me as closely quoted as possible:
What you have is very serious. Your CT shows interstitial lung disease, which is very dangerous and very progressive. I’m extremely concerned about the pulmonary hypertension, which eventually can cause heart failure. This is most likely caused by some kind of autoimmune disease that has yet to be identified. Your case is very complicated and needs a number of specialists involved in order to confirm your diagnoses and agree on the correct treatment plan. If you were my relative, due to the progressive nature of this disease, I’d recommend to you that you go to Mayo Clinic. They can do for you in one week, what it would take us weeks or months to do since we don’t have all the specialists you need locally. You have no time to waste – we must stop the progression.
Somehow, sitting there, alone, trying to stay focused during this most shocking conversation, I held it together. I couldn’t even understand the words Interstitial Lung Disease. I made him spell it. I thought the pulmonary hypertension thing was no big deal. I thought this was going to be a relatively easy thing to deal with. After all…I wasn’t really sick right??? I wasn’t throwing up. I didn’t have a fever. I hadn’t suddenly lost weight.I didn’t have a cough or even the sniffles. I had never been sick. I was only 38. My kids were 5, 3 and 1. How in the world could this be happening. I kept it together until the end of the appointment. Then I broke down. He hugged me. I went to my car and sobbed to my mother. I called another friend and sobbed too. I had to pick up Chinese food for dinner. I had to somehow pull it together enough to go home and face my children and my husband. I had to find a way to get him alone and tell him what I’d been told.
November 14th: Positive Jo-1 Antisynthetase Syndrome
That Friday I went to the hospital and picked up my lab results that the Rheumatologist had ordered. At the same time they were handed to me, he called me on the phone. He asked what happened with the Pulmonologist and I related info and the plan to send me to Mayo Clinic, most likely the one in AZ. While talking to him, I looked through the results…I saw a lot of negatives…until one called Jo-1 and it was marked abnormal.
As I finished up my update, I told him that I had the lab results in my hand (yes, I actually got them before he did!) and that one was positive. When I told him it was Jo-1 he sounded shocked and nearly speechless. He asked me what the number was and I told him. I asked him what it means. That’s when I first heard the words AntiSynthetase Syndrome. He told me that it is a very rare disease and that he’d honestly never met another patient with it. He told me he needed to go do some research now and that he’d get back to me.
November 16th: Flew to Mayo Clinic
I was really worried that it would take a long time for me to get an appointment at Mayo. But to my surprise, they called and scheduled me for Tuesday, November 18th. I decided it was best to fly in on Sunday to have a day to regroup. My mother flew in to help my husband care for the kids and my step mom made arrangements to meet me in AZ for the appointments.
Mayo Clinic and their system of treating patients was truly amazing, and I’m very grateful for it. But some of the things I had to hear there and do there were very sobering and scary. They talked to me about the possibility of a future lung transplant. They told me that others with my disease become incapable of walking or getting up from a seated position or raise their arms above their head. One doctor suggested that I needed to immediately move from my higher altitude home or risk heart failure. It was there that it occurred to me that my children would never know me as being well. I was spared a lung and muscle biopsy there, but I wasn’t spared a bronchoscopy (where they go down my throat and scrub my lung in order to test for anything that might be dangerous while on immunosuppressants). I had my first and most torturous lung function test. They confirmed all the same diagnoses that my local doctors came up with. They agreed with the current treatment plan I was on of high doses of Prednisone. They decided to put me on Mycophenolate (CellCept) as my first immunosuppressant to try. I was told they were only expecting to stop the progression. They said any improvement would be a bonus, not a goal.
For the past year, I’ve tried to live with this in mind:
I refuse to wallow, but forgetting is impossible.