I saw Dr. Pain on Thursday. Actually, I saw his resident, Skinny Dude, but Dr. Pain still came in and gave me a big hug. They were all super happy that I'm doing well enough to be working again, and I sometimes even feel like myself again! Although I'm still in pain, it is so much better, so I'm taking less and less of the narcotic pain meds. ;) Yay!
I am having a lot of muscle pain, so we're tweaking meds to make it better. Last time, Dr. Pain started me on anti-inflammatories, which have been AMAZING for my joints. I know the GI guys really want me to NOT take NSAIDSs, but this one is supposed to be safer on the GI system. And they make a huge difference in my ability to function. To minimize any long term side effects, Skinny Dude suggested that I try doing 5 days on, 2 days off. I skipped a day, and my joints are letting me know about it - I am SO STIFF and achey now. I feel like I have the flu and I haven't been able to straighten my knees since Friday. Boo. I think that the joints are flaring up from the weather anyways (and... I wore heels at a wedding on Friday), and skipping didn't help. He told me to see if I could tolerate not taking it... maybe my answer is no... but I will try again next week!
We also talked about the gastroparesis and narcotics issue. My nausea has improved quite a bit with the antibiotics and anti fungals, leading me to think that the problem was bacterial/fungal overgrowth, not gastroparesis. But anyways, I asked about it. Skinny Dude thought that since things are going better with the nausea and I'm doing well from a pain perspective that it wasn't necessary to make any changes. I'm taking a reasonable amount of pain meds and the nausea isn't affecting me nearly as much anymore. So, basically, I can keep taking the meds as needed because it seems like the nausea issue is getting better.
Overall, my pain is under waaaaaay better control most of the time and I am living without thinking too much about it. This is the most wonderful thing imaginable. It has been so unbelievably bad and so unbearable for such a long time. It is the most amazing relief to NOT be in horrible pain all the time. So I raved to the Pain Drs a little bit and they beamed with joy. They are the only doctors I actually get excited to go see. Any day you walk out of a doctor's office with prescriptions for anti-inflammatories, muscle relaxants, and sleeping medicine is a good day in my book. ;)
Then, I saw Endocrine Dr. I hadn't seen her since July... so I had to fill in a lot of gaps for her! So much has happened since then! I was worried she'd make me taper down again on steroids. Obviously I want to get off them, but I finally am doing well and feeling okay, so I'm super hesitant to make any changes! Don't want to rock the boat! She agreed that we should not make any changes until the abscesses are gone and my white count is normalized. Then, we will cut back a tiny bit on one of the three doses. I will alternate, taking the smaller dose one day, and my normal dose the next day. After a few weeks, if all goes well, I can take the smaller dose every day. Long term... she indicated that she does not think that I will be able to get off steroids entirely. That was disappointing to hear. But she would like to try to get me down to half the dosage I'm at right now. This is a very long term sort of thing. It will take years to see where my body will settle out. I don't really care... I'm just happy to NOT be having adrenal issues right now! When my adrenal stuff is acting up, my pain is so much worse, my GI tract stops absorbing, I get so dehydrated and sick and shaky and literally can't move. If I have to take steroids forever to prevent that, so be it!
Right now, I still feel okay - sometimes I even feel good! I'm still nauseated and hurting, but it's at a level where I can handle it. I had issues with blockages three times this week, which is a big bummer, since that problem had gone away for a while after surgery. But they haven't been too painful, and they always pass on their own after a few hours. BUT - I am functional almost all the time. It is so incredible to be able to shower and get dressed and not have to rest for an hour or two afterwards. It's amazing to be able to do multiple things in one day - like run errands AND go hang out with friends. Sometimes I just feel like a normal person and don't have to think about how I'm feeling!! I'm eating really well. This is incredible. I am so thankful for all these huge blessings! I cannot take them for granted.
I am a little frustrated with keeping track of all the pills I have to take - I'm on 11 different meds, most of which I have to take three times a day - but they are all WORKING to keep my body up and running and comfortable, so it's really a small price to pay to be functional!