New Rheumy, Feeling Calm, Anxiety Issues

I had my 1st appointment with the new rheumy yesterday, Dr. Ch. It went well. I think things started off a bit rocky because of the belief, although not entirely correct, was the reason I was leaving my previous rheumy. In part, it was due to the constant barrage of residents that were always present, it became very tiring repeatedly going through my illness from beginning to start at every visist, showing photos of my body, explaining. I completely support new learning, teaching. But this was only a tiny, tiny fraction of why I left Dr. H. It was due to his REPEATEDLY not even knowing if I was on Methotrexate medication Seriously, each visit, he didn’t know if I was on meds, off meds, I had to remind each time that I was indeed still on meds. One visit he would say, “good we’ll keep you on your current dose, you are doing well” then the very next visit tell me ” Im taking you off meds. start tapering”. This constant roller-coaster of surprise and fear was getting to be too much. I would cry often, begging to stay on because each time I went off, I would flare. His only response was my labs are perfect, time to go off.

Anyways, the new rheumy, Dr. Ch. appears to be very understanding. I don’t mind the residents coming in at all. In fact, I feel happy to be an example of a compliant patient, who takes her meds, keeps all appointments, and provides information on a disease that is rare and can often be quite difficult to diagnose, due to the symptoms and characteristics falling into several other disease possibliities.

Yesterday, I had anxiety, very high anxiety. I could feel my blood pressure going up and up. I told the resident this while he saw me first. He asked why, I told him that I was very fearful of being told that Dr Ch. would not see me unless I went into a full flare (recall my previous interview). She seemed to agree that if my small dose each week was working, then why tamper or titrate? She seemed to be very caring. I told her that someday, possibly, I will taper but the fear of flaring is overwhelming. She didn’t push me. At the end of the appointment, I felt calm and safe. She seemed to understand.

I do know that I have developed an anxiety issue. I never used to be this way. I think over time a person becomes conditioned to automatically respond to very small cues, invisible markers of personality that compel the sensitive viewer to overreact physically. I believe this is happening to me. Well… for the mean-time I will stay on 1 pill, 2.5mg. Maybe I will go off of this or maybe I will stay on it forever? Even if my labs are perfect, for years on end, whats the point of disrupting the equilibrium? If homeostasis nirvana has been found with 2.5mg, cant I just live in this “healthy” bliss forever?
Stay Healthy my Friends,

Daily Update

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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

4 Comments Leave a comment

  1. Hi Claudine,
    You were on my mind tonight so I thought I would check in and see how you were doing. I am so glad you have finally found Dr Ch and feel comfortable and feel like you have some peace. I hope now in June you are indeed feeling this way. I am now weaning off the prednisone 1 mg daily that I have been on 6 months. My Rheumy said to try, but he was also fine with me staying on this very low dose forever. He is amazed at how well I have done, but of course is unsure I will ever flare again. I do have some residual joint pain from the inflammation, but I can manage that with NSAIDS. After a year and 4 months, of recovery and remission I am beginning to feel like I have energy back and ready to move on. I think the anxiety will always be there–return of the dragon; to be that sick again. Take care. Patty

    • Hello Patty, Thank you for checking in. Strange how the universe works sometimes, I was thinking I should update the blog just yesterday and check in on friends, like you. I am so glad you are feeling better. 1 mg of prednisone is a nice small amount. Is your Rheumy’s goal to switch to Methotrexate after the prednisone? Just wondering, that was what my Rheumy did. It seemed to work. I completely understand the fear of remission. I am hoping that you will eventually not require any NASIDS and your residual pain will be gone. I am so very happy that you are doing better. Take care, stay healthy, Claudine

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