I’ve been putting off posting this – mostly because I’m putting off dealing with it all until I can come up for air and do so properly.
See, it’s what I call “crazy season” – it’s the time of year that’s filled with graduations, end of school events, dance recitals (and final competitions for the season), baseball tournaments, birthdays for both my kids, and the two week summer institute that I help run for my job. It means that for two weeks I have to be at KSU (hour from my house) everyday from 9am-5pm instead of just 1-3 days per week. I’m one of the people in charge of bringing in the high school teachers and graduate students together for two weeks of learning and work to prepare for their upcoming year in our grant program. So I’m “on” for much of the time for two weeks – far, far different from the demands my highly flexible job usually places on me.
My kids know that right after they get out of school for the year I have my two weeks of intense work. It’s the only time they have to go to daycare. It makes for long days for everyone (leave the house at 7:30am, daycare/work, husband picks kids up and gets them ready for ballgames/practice/whatever else we have going on, I meet them at the game straight from work and we all get back home between 8 and 10 depending on the activities that evening and then starting all over again the next morning). Weekends are filled with practice, birthday parties for my kiddos (including cleaning, cooking, etc.), end-of-dance-year celebration parties. Kids are tired, I’m tired, we’re all trying to make sure that the bat bag is in the correct vehicle, that I bring stuff with me in the morning that I’ll need that night when I don’t have a chance to run home before the evening activity, etc. We eat quick meals (often fast food) because nobody has time to do anything else. It’s basically a crazy two weeks – probably the worst sustained craziness of the year for our household.
Serial 12 hour days are extremely difficult for someone with pervasive fatigue. I can’t even put words to how hard I’m pushing myself just to maintain the schedule right now – and I truly believe I’m only able to do it because I know that at the end I’ll have a break and I’ll be able to crash.
This year it also came right at the time when I have a lot to deal with and process with my medical issues. Ugh!
I went for my scheduled appointment at the rheumatologist two weeks ago – right before the last week of school craziness that bleeds right into my “two weeks” craziness. The appointment was scheduled back in February. At the February appt, he told me that his plan was to order Rituxan for me as treatment for my Sjogrens (sicca symptoms, fatigue, etc.) after he got the results back from the biopsy I was about to have. He specifically told me that he’d order the treatment no matter if the biopsy results came back positive or negative. He had me schedule a follow-up appointment (which was the one I just went to two weeks ago) with the understanding that when the biopsy results came back he’d order the treatment and I’d probably be on it for a little while before this follow-up appointment came around.
He though I was going to have a skin biopsy to test for small fiber neuropathy (since the EMG/NCS was normal and it can miss small fiber neuropathy). But the neurologist and I both decided that I didn’t have the symptoms of small fiber neuropathy (tingling and numbness) – I have fine motor control and muscle weakness issues.
So I was scheduled with neurology for a muscle biopsy (bicep) instead. The biopsy was scheduled 3-4 weeks out and I was told the results would be back in 4-8 weeks. That meant a possible three month “turn-around” from the time I saw the rheumatologist and to when the biopsy results would be back. I called the rheumatology nurse and let her know this (since it was different from the skin biopsy timeline) and asked if he could order the treatment without waiting for the results since he was going to do it no matter what the biopsy results were. She said that nope, he wanted to wait.
So I had the biopsy and waited to hear back from neurology with the results.
I went for the “follow-up” appointment with rheumatology two weeks ago and the first thing he said when he sat down was “well, since the muscle biopsy came back negative – all normal…” to which I looked shocked and said “well, it’s nice finally hear those results since this is the first I’ve heard of them!” He asked if neurology hadn’t communicated the results, and I told him that they most certainly did not.
He then proceeded to tell me that he didn’t feel like I warranted the Rituxan treatment. This was after 7 months with many appointments with him (all of which documented on this blog!) where at EACH and EVERY appointment he made sure that I understood that Rituxan was the ultimate “goal” treatment and that before we begun it he was doing more and more tests to rule out other causes of my symptoms – to make sure that it really was the Sjogren’s causing all these symptoms and not something else overlapping.
So after 7 months of appointments leading up to it, he said “nope, that would be like killing and ant with a sledge hammer.” This is despite him proposing it for 7 months, him describing the research where people are using it to treat Sjogren’s and despite me reading the research myself to verify that.
I began to talk to him about my fatigue and how pervasive it is – how concerning it is when combined with the thought of having to go back to a job like teaching full time (which is far more physically demanding and which I’m pretty certain I’d have a hard time doing if I could even do it at all) when my current flexible jobs ends in a year – which is far more concerning than he seemed to think it was.
At this point he said he’d talk with my primary care doctor and discuss her putting me on stimulants to help keep me awake. Ummmm…nope, not what I want to do. Not treating the problem – just helping me “get through” tired moments – is not what I’m looking for.
He still just told me to stay on the same treatment I’d been on for the past year (Plaquenil) that isn’t alleviating my symptoms AT ALL and come back in 4 months. Why would I come back in 4 months? I’ve been coming for 7 months and nothing has been treated or managed in any way. It’s not going to be any different 4 months from now!
He said that “of course you’re welcome to get a second opinion” and “most doctors wouldn’t have gone as far as I have with the testing.” So in other words I should be thankful that I went through months and months of testing to eliminate all the other possible causes of my symptoms to have it confirmed that it is, in fact, my currently diagnosed disease (Sjogren’s) that’s causing the problem only to be told that he’s not going to change my treatment plan (despite saying that he was for the past 7 months) even though it’s not working?
I left his office and sat in my car in the parking garage and cried. Ugly, all-out, sobbing cry. I’ve waited for so many months to rule out other diagnoses to begin treating this one and then it was all taken away.
And then I had to drive home and pack my kids up for my daughter’s last dance competition and my son’s first baseball tourney of the season – which we had to leave town for within a few hours of getting home from that appointment.
I didn’t have time to deal with it. I didn’t have time to process it. I had to hold it all together to get through that weekend of both their activities…and then the following week of end-of-school activities and then the following two weeks of a demanding work schedule. And the day that my “two weeks” of crazy end my son has another baseball tournament beginning.
And add to all of this that I’ve had three opthamologist appointments – collagen punctal plugs (dissolve after a few days – “trial run”), regular punctal plugs (had in for 9 days and still couldn’t stand them – felt them against my eyeballs all the time) and internal punctal plugs – wiped out of my eyes within an hour of having them put in. And this all happened immediately before my two weeks of non-flexible schedule, so now I’m back to extremely uncomfortably dry eyes (as opposed to the mildly uncomfortably dry eyes I experienced with the plugs in) until I can get back to see him and try again.
All told, it will be three and a half weeks from the time I left that appointment until I can breath, take time and really process all of this. I simply can’t stop right now. I have to be their mom. I have to do my job. I have to get to June 9th when I’ll have a break and can deal with the emotions that I’m barely keeping under control right now. I’m frankly amazed that I’ve been able to write this during my lunch break today because every time I think about it or try to tell someone about it I break down crying again (which explains why writing a blog/book about my experiences is so much easier than simply telling someone about it – I can detach when I’m typing and am able to get thoughts out without being choked with emotion like I am when I try to tell someone).
And after I process the emotions, I need to analyze my choices for moving forward – which include staying with this doctor and this treatment, seeking another opinion from someone at the same facility or seeking another opinion from someone in another location (significant travel).
But first I’ve got to get there. God, I hope I can!
One thought on “Temporarily on hold until I can deal with it”
I’m so sorry that you have had this huge disappointment about your treatment. Sometimes it’s only the hope of things getting better in the future that keeps us going. It’s too bad that this happened so close to your most stressful time of the year
You’re practically a miracle worker doing all of this at the same time.I’ve been lucky with punctal plugs. They stay in and I don’t feel them but we’ve all got different bodies.
You might as well see him in 4 months if only to tell him how your life is affected. This is no ant he is trying to kill.