Just An Update!

I haven't updated in awhile, because I have been, well.. in pain,  in bed or just plain lazy.  Okay, I have been doing some work stuff from home (for Pixel Perfect, not NFD), but that has just been in the last week or so. I would love to say there has been a huge improvement and I am feeling so much better.  But, I'm not. My pulm doctor has me down to 10mg of Prednisone a day, and since I dropped from 30mg and below,  my pain has started to return. I've had some new symptoms come up, like hip (joint) pain, my bumpy painful rash is now on my scalp, not just my chest and face, and I have weird (dull ache) pains in my lower back/side.  I cannot tell you how frustrating it is to be in pain but also to be clueless as to if it is from the sarcoid or the medication...or maybe something not even related?
My pulm dr is only in clinic 1 week per month (my next appt is 8/28) so we have contact via email through the hospital charting system (MyChart). I've learned this is the quickest way to get a response directly from him. It may take a couple of days, but it is really a great resource for me (I can also see my medical history,  test results, appointments etc.) Anyhow, I emailed him when the pain first started to return and was a bit frustrated that he didn't think my "limb pain" was sarcoid related, and wanted me to see my family dr. After explaining to him that it was JOINT pain, he then said it very well could be that the sarcoid is affecting my joints, as it often does. After a few emails back and forth, he said he would put in a referral for me to Rheumatology and to let him know if I continue to have the pain in the next week or so, so he could put me back on 20mg of the Prednisone. He wants me to see Rheumatology because he said sometimes it can really affect the joints and stronger or different medication is needed to get ahead of the symptoms and relieve them.  Good Lord Almighty, PLEASE! I am so tired of this pain. I am not usually one to dwell or complain a lot, but the constant joint pain, swelling pain,  feeling of my skin on fire, 24/7 is enough to make me go crazy. I do take pain meds, but I have a love/hate relationship with them.  I think I've mentioned this before, but I take a half of a Norco twice a day. I have tried taking a full one, but it makes me so sick to my stomach and gives me a massive headache. The half doesn't,  but it also doesn't control the pain as well. So, I do a lot of sleeping during the day or when I can fall asleep, to not have to deal with the pain.  One good thing about the lower doseage of Prednisone is that my insomnia isnt as bad :) AND.. I am no longer eating us out of house and home! I have already put on about 25lbs since this started, which I am not too happy about..but, I can deal with that when I am feeling better. Thank goodness for my buy/sell/trade groups, I've been able to get some clothes that fit, free or pretty dang cheap. 
I've had some days here and there that I get out of the house. We go yard saling some weekends or run errands. Not super exciting, but it gives the dent in my couch time to go back to it's original shape :)  I did have one eventful day, where I had to go return my car rental that I have had since April, and pick up my car that was finally fixed (GM recall). I got to stop in at work and see my peeps (ahhh I miss them!) And my mom came with me on her lunch hour to get it take care of, so I got my mommy time (miss our daily lunches terribly) My car had been sitting so long that the plates expired,  so I had to go to the DMV that day as well. Luckily I was in and out in 5min (no seriously,  only FIVE freakin minutes!) I was completely exhausted when I finally got home, but grateful to have gotten out and felt accomplished. 
The last few days have been rough for me. It all started when I slept through my doctors appointment. Silly, right? But it wasn't just any appointment. It was with my actual primary doctor, not his PA, which I've been having to see the last couple of months. I haven't been able to see my doctor since May (before all of this started) So, it was a much needed and anticipated appointment for me. And miss insomnia slept right through it. I cried most of the day and had a semi meltdown. The last few days following that have been less dramatic,  but still rough.  I am not sure how my husband puts up with me and my irrational moments, but he does, amazingly. He's reassuring, positive and understanding. I seriously don't know how or why, but I am so grateful. And I am sure by now, my mother cringes when she sees a text pop up from me hahaha.  I guess that's a downside of having your mom be your best friend as well.. she gets to hear it all :) Sorry mommy! Sure do love and appreciate her. I love and appreciate all my family and friends that have been there for me. To listen, to care, to even just think of me. I know this is all a process and will take some time, but in dealing with the pain daily, I am starting to lose some of my patience. I was really hoping to be back at work by now, at least a few hours a day, but that hasn't happened yet. With being out of work for almost 8 weeks unpaid, we are really feeling the impact. But, I am grateful my husband has a job and also that my work has been amazing and allowing me this time off. Counting my blessings for sure. 
I am anticipating my upcoming appointments and will, of course, blog about them and if anything changes. Thank you all for being amazing! Xoxo