I Tell You What

First of all, I’m hoping that 2016 will be a better year for all of us, not only for our health, but for every aspect of our lives, everything and anything that touches us. Resolutions are not for me, they are made to be broken. Like a bucket list before the term “bucket list” came out. I can make goals though. For now I’ll check in with myself at least once a month. I believe goals give us hope and something to strive for. Without hope we have nothing. And I know that sometimes I need the goals so I don’t forget to live and have hope while I’m going through whatever it is that is ravishing my life at the moment.

Bored Again

I saw the Ophthalmologist on December 30th. She said my Macula looked fine and she saw no signs of Macular Degeneration. I asked her how is it that someone thinks they see something and then there is nothing there? The best way for me to ask, “Wtf?” She said it could’ve been the high dosages of Prednisone I had been on. She agrees that I should still stay off of Plaquenil and even mentioned one Lupus medication that none of my specialists have brought up to me. They want to put me on Cytoxan before something that is milder? Well, I’m not going to worry my pretty little head about something that has not happened yet. 🙂 Apparently I just shouldn’t worry about anything anymore- it doesn’t make any sense. I stressed myself out over becoming permanently blind because of what one person said and then end up being told that was not true. Lupus is crazy too, so fickle, not making sense most of the time. Cray cray. 🙂

 

Annual Optometrist Appointment

I finally called my Optometrist in October to set up my yearly eye appointment. I always enjoy seeing her and her receptionist. So as usual I enjoyed my time there looking at new glasses (even though I was thinking about just buying contacts this year), we laughed & talked a lot. Especially when I had to wait for my eyes to dilate. After my Optometrist took the pictures of my retina, she pointed over at the slides and started telling me what everything meant. I was listening, sometimes half listening because I wanted to hurry back to work. After a while she pointed to one part of the retina that I was interested in knowing what it meant and after I heard “Macular Degeneration in your right eye.” My mind went blank, and then ran with this almost nightmarish thought, memories, my life and how I had hoped I was getting better and wouldn’t have to worry about another organ being affected by the Lupus… “I think you have Lupus, here is the medication, it can cause irreversible eye damage.” But it was a low percent. I was just here a year ago and everything was okay. She mentioned the Plaquenil and how “they” (my various doctors) would probably take me off of it. “But then what am I supposed to take now?” I thought.

I realized that when I was simply told that the medication could cause eye damage, I forgot to research exactly what that meant as I was still researching Lupus and Membranous Glomerulonephritis; and then everything that came after that. How stupid I was! How could I have dropped the ball? On the other hand, it was a small percentage of people this would happen to and what else were they going to give me? Back then, in 2001, it seemed like Plaquenil (Hydroxychloroquine) was the only option and what was used to treat SLE.

Two days later I had my Rheumatologist appointment scheduled. This Doctor doesn’t seem to care and does not have time to discuss things. I can’t wait until next year when I will have another option (I’m on #2 at this time since I moved to an island). I certainly was not thinking about my medical options when I really wanted to move home. But I’m glad to be here and my pain is not the same as it was while I lived in Colorado. I mentioned to my Rheumatologist what I was told and added that my Optometrist’s office called me after my appointment to let me know that they had set up an appointment with an Ophthalmologist for me- for an OCT scan, to see what the damage is. He took me off Plaquenil. I asked, “So what am I going to take now for my Lupus?” I was a little angry and wondering, if people live without Plaquenil when they are on Lupus, then why have I been taking this for almost 15 years? He said that I am on CellCept which will help and then threw around that word again that I dislike a lot, “Cytoxan.” I hope it never gets to that point. By the time I see the Ophthalmologist at the end of December, I will have waited over 2 months to find out what is going on. I researched what I could and of course, every case is different so I really don’t know what to expect. Just like with Lupus. If I do end up losing my vision, I just feel right now like I would be pissed that after everything else that Lupus has done to me or put my body and mind through, it just keeps taking and taking… and now it has to mess with my eyes?! I tell myself to “settle down” a lot because there is no use in getting stressed or worked up about something that I have absolutely zero control over. All I can do is see if anything is wrong, and if it’s that bad, see if anything can be done and do it, or if not, that has been my life with all of my medical conditions that have no cure. I’ll get up again and move along like I always do.

Other than that I spent some time in late August in the hospital. CHF was present, A-Fib, and my Lupus. And 6 hours in the ER in September for an A-Fib/ Lupus/ vomiting for hours episode. At least that was on a Sunday and I didn’t want to miss work the next day or deal with FMLA and benefits that mess up everything- they called me when I was in the hospital to ask me questions about my absence in order for them to approve it & wanted me to fax them a doctor’s note. I told her I would take care of it after I was discharged from the hospital (probably in a few days) and would ask the Hospitalist to write a note.

I am hoping to write more and “talk” about the Rolfer I found and how great but painful it was. It helped most of my back pain for a while, or at least took the edge off. I do like it better than going to the Chiropractor though. Have a great day or night.