It's been six months since I last updated my blog so this will be just an update post. I did not even do a year in review for 206, probably because of the last two months being so rough on our country I could not bring myself to think about it.
Since I left you a lot has happened. I finished my last semester of college during which I student taught and then did the whole graduation thing. I also have a lot going on medically.
Student teaching is the reason I did not really blog this past semester. I loved it so much but it was really hard and exhausting. All my energy went in to my students and my assignments as I had to build my senior portfolio. I still cannot wrap my head around the fact it is over and I am a college graduate.
Somehow during student teaching I stayed fairly healthy. I only caught one upper respiratory infection. Of course that was a whole ordeal with breathing issues and a fever which sent me to the ER and an overnight hospital stay. However I only missed one day of student teaching and managed to miss the flu even when 14 of my students had it.
For most of the semester (most of the year really) the combo of Azathioprine/Imuran and Hydrocloroquine/Plaquinel seemed to be keeping the Sjogren's under control. I have actually been able to get myself on only a liter a day or IV fluids and now I am doing 950ml most days, However in the beginning of April things started going south. I had some warning signs before that with my GI tract slowing down and my joints getting stiffer but all the sudden my mouth was full of ulcers. Cue the prednisone. Things that don't go well together- roid rage and 36 fourth graders. All though all things considered I think I handled the steriods well and kept my cool most of the time.
Of course this happened only a couple weeks before my endocrine appointment where I was hoping to finally get cleared from the whole secondary adrenal insufficiency mess but that did not happen thanks to being back on steriods. And dropping under 10mg made my ulcers come back in 2 days, meaning I restarted the burst. The second time around I managed to finish the burst without the re-emergence until the day after I finally got off prednisone.
During this time I saw Neuro for the first time after a 6 month wait to try and deal with my sensory perpherial neuropathy, I was pretty unimpressed, I am positive he did not read my chart before coming in. He seemed to think all my issues were pretty mild and did not need any treatment till he was ordering blood test. He asked about my diet and I explained I was mostly tube fed due to gastroparesis (which is in my chart and I had said). He finally seemed to get how severe my autonomic neuropathy was and said "oh you might actually be a good candidate for IVIG." That has been really hard to try to set up and then insurance denied it so I am now in the appeals process.
I just had a rheumatology appointment Monday and there was a lot going on. My doctor had a resident with him and was pointing out why it took so long for me to be diagnosed with Sjogren's and the difference in disease presentation in the pediatric vs adult population which was great. We discussed my worsening mouth ulcers and neuropathy, which he said is a sign of organ involvement. We briefly discussed IVIG and also Rituxan has been brought up. However the latter is another immunosuppresant and I am currently already struggling to fight infections off so I am not in favor of it. Despite my reservations about all the immunosuppresants my rheum wanted to be more aggressive so he upped my azathrioprine dose.
I think that is a solid summary, Sorry if it is a bit all over the place.
Since I left you a lot has happened. I finished my last semester of college during which I student taught and then did the whole graduation thing. I also have a lot going on medically.
Student teaching is the reason I did not really blog this past semester. I loved it so much but it was really hard and exhausting. All my energy went in to my students and my assignments as I had to build my senior portfolio. I still cannot wrap my head around the fact it is over and I am a college graduate.
Somehow during student teaching I stayed fairly healthy. I only caught one upper respiratory infection. Of course that was a whole ordeal with breathing issues and a fever which sent me to the ER and an overnight hospital stay. However I only missed one day of student teaching and managed to miss the flu even when 14 of my students had it.
For most of the semester (most of the year really) the combo of Azathioprine/Imuran and Hydrocloroquine/Plaquinel seemed to be keeping the Sjogren's under control. I have actually been able to get myself on only a liter a day or IV fluids and now I am doing 950ml most days, However in the beginning of April things started going south. I had some warning signs before that with my GI tract slowing down and my joints getting stiffer but all the sudden my mouth was full of ulcers. Cue the prednisone. Things that don't go well together- roid rage and 36 fourth graders. All though all things considered I think I handled the steriods well and kept my cool most of the time.
Of course this happened only a couple weeks before my endocrine appointment where I was hoping to finally get cleared from the whole secondary adrenal insufficiency mess but that did not happen thanks to being back on steriods. And dropping under 10mg made my ulcers come back in 2 days, meaning I restarted the burst. The second time around I managed to finish the burst without the re-emergence until the day after I finally got off prednisone.
During this time I saw Neuro for the first time after a 6 month wait to try and deal with my sensory perpherial neuropathy, I was pretty unimpressed, I am positive he did not read my chart before coming in. He seemed to think all my issues were pretty mild and did not need any treatment till he was ordering blood test. He asked about my diet and I explained I was mostly tube fed due to gastroparesis (which is in my chart and I had said). He finally seemed to get how severe my autonomic neuropathy was and said "oh you might actually be a good candidate for IVIG." That has been really hard to try to set up and then insurance denied it so I am now in the appeals process.
I just had a rheumatology appointment Monday and there was a lot going on. My doctor had a resident with him and was pointing out why it took so long for me to be diagnosed with Sjogren's and the difference in disease presentation in the pediatric vs adult population which was great. We discussed my worsening mouth ulcers and neuropathy, which he said is a sign of organ involvement. We briefly discussed IVIG and also Rituxan has been brought up. However the latter is another immunosuppresant and I am currently already struggling to fight infections off so I am not in favor of it. Despite my reservations about all the immunosuppresants my rheum wanted to be more aggressive so he upped my azathrioprine dose.
I think that is a solid summary, Sorry if it is a bit all over the place.
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