It’s Been Forever… and a Day


12 October 2016

It is now December 13, 2016. Time flies by quicker every year. One thing I have always known but understand on a different level now is that with Lupus things never stay the same. It is always changing. Even if it’s just the pain changing types and pain levels or moving from one part of the body one day and then be something different the next.

I am more forgetful than usual and there are too many things that I want to do but do not have the time, energy, or resources. Time and energy are two great resources. And not feeling sick often.

I will have to see where I left off to see what type of update I need to make and then for the new things. Lately I’ve had a few epiphanies. I really must write these things down as I’m thinking about things.


I’m having a terrible time on Prednisone this time around. Im not sure if the severe pain (cramping?) in my legs and feet are from the Prednisone or a combination of restarting that on November 19th along with the full dosage (3,000 mg of CellCept). This is to carry me over to February 3rd when I see my Rheumatologist again.

I will have to elaborate on these things more soon. I want to say tomorrow but I don’t want to not have the time. I’m really going to shoot for at least 3 blogs a week if not more. There is also a project I want to start working on really soon and will share that as well.

I have just restarted making jewelry in the past month or so for my business. I just had to stop for a while when I was sick all the time. The biggest thing other than my daily pain that was always there was my debilitating fatigue. I have spoken to all of my doctors and specialists & because of all of my conditions and not being able to give me just anything especially if it could affect the heart, my next option is to call Apria Healthcare (Boo! Hiss!) and have them take my CPAP Machine  to test it and make sure that it’s working properly. And if not then adjust it. In the meantime, I had spoken to my PCP about possibly getting B 12 shots if he thought that might help. I need to double check on the dosage but I’ve been taking the shots once every two weeks (so twice a month) & it did take a little longer than anticipated for it to work for me but it seems to have helped a little. However being on so many medications especially the Prednisone lately is kicking my butt. I just got an inhaler because I’ve been having trouble breathing, I’m uncomfortable in so many ways, of course the moon face. And I am sooo grouchy! I try my best to keep it to myself. So far so good, I think. 🙂

And my PCP moved out of state. I was devastated. I’ll have to dedicate a post to him. The good news is I found a female doctor at the clinic that I work at. She’s an Internal Medicine doctor and I really respect her. She will make time for me on the same day even if I might have to wait. But I don’t care. When I saw one of my first Rheumatologists at 27 years old, it was always a 2 hour wait AFTER my appointment time that I saw him. But it was the way that it was. Little did I know  that I could have looked for another Rheumatologist. Maybe it did cross my mind but was “too much effort… to little reward.” Just not worth the time, new referral, and wait to possibly be in the same situation or worse elsewhere. Strange how I don’t even remember all of their names anymore yet there were quite a few. Especially Rheumatologists.

Oh did I already say I finally have a new Rheumatologist and I like him? He’s very smart, answers questions, I was impressed with the most complete blood panel I have ever seen. As far as Lupus, Sjogrëns, my kidney function, the C Complements, and some things I have never heard of.

I guess a lot has been going on. I have stayed out of the hospital for over a year. 🙂 But I did have two ER visits in October.

June 6 of this year marked a full year of me not smoking another cigarette. I do get afraid sometimes because it feels like it would be so easy to slip and to just go back and have a difficult time quitting again. So I really have to stay away. It was definitely something that was hard for me to do but was and has been very rewarding.

I have until February to decide on a plan my Nephrologist wanted my Rheumatologist to talk to me about. Cytoxan infusion with Prednisone (Why?!). I have already spoken to an OBGYN who my new Rheumy referred me to talk to me about what I need to think about from their standpoint. The main topics was do I want to have kids and possible options prior to treatment and early menopause. (I really don’t remember signing up for this).

I need to try to sleep through this leg pain because my schedule changed to where almost everyday is an early day. I was never known to be an early riser and if I don’t set at least five alarms I fear that I’ll sleep through it or turn it all off in my sleep. Because I won’t remember any of it later.


I forget that I really should act my age. I am too old to be doing certain things but I have been telling myself that since I was probably 30 so I know I won’t and do not want to change. I have way too much fun and get to laugh at myself. And if I didn’t still laugh sometimes I think I would be in trouble. So never stop laughing. Do whatever you need to do to put yourself in that “happy place,” in the present moment. Some people like to watch funny movies, comedies, laugh with friends or various other activities. That’s one thing I need to remember especially when I am on leave from work and at home.

Okay, I will write more soon and I intend to make this a habit. I really enjoyed blogging and it did help me and I met other wonderful Bloggers through their writing and the kindness they showed, or their honesty, and being alone but not amongst all of you who understand what living with Lupus is like. I have been thinking about that a lot too. A lot about a wide variety of subjects and what is most important in Life. Or what is not important.

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