Hello friends :-)
First – Remember starting on Friday if you want to email me – you have to email firstname.lastname@example.org because I’ll be out of work from 7/30 to 8/16.
I’m sorry if this is the first that you’re hearing about this. I have been in a whirlwind of tests and appointments, and just haven’t been able to connect one on one with everyone that I wanted to share this with. I have been diagnosed with an autoimmune disease called dermatomyositis and here’s everything that I know so far! This is the reason that I have had ugly hands for the past 4 years or so, and also why I am so exhausted all the time, and why I have felt really weak – and even gradually stopped blow-drying my hair! I’ll have it forever, but many people have a remission-like experience with treatment.
I have included the past results that I sent out too – so you can read if you would like. I’m going to be fine so don’t worry – but I have been pretty stressed out, and have been feeling down and sometimes a little scared; so I am so grateful for my amazing friends – you mean the world to me and always cheer me up!
Here’s a site that explains a myositis pretty well:
http://www.mdausa.org/publications/fa-myosi-qa.html there are a few areas where you can click on “dermatamyositis” for a little more info. The Mayo Clinic explains the treatment options pretty well:
http://www.mayoclinic.com/health/dermatomyositis/DS00335. And here’s a super Cliff’s Notes version -
I have some more results for you today (if this is the first you’re reading about this you might want to read from the bottom up):
Blood work from 7/15/10:Same as the 1st round – although this time my CK was lower, which is right on since the week of the 12th I felt great. The following week up to now I don’t feel so great – so you know that my CK has gone up again. The CK is a perfect indicator of my current energy level. The tests that were looking for the piggyback diseases came back normal which is great! No lupus, or any of those guys – YAY!
MRI 7/21/10:Don’t know these results yet – but will show any tissue damage and inflammation.
EMG 7/26/10:This test came back totally consistent with a myositis – my upper arms and upper back/neck/shoulders, hips and thigh muscles all show irritation and inflammation. This is good – because since this is right on the diagnosis, it will help my rheumatologist help me feel better. This also will most definitely mean that I need to do physical therapy.
Hopefully I know by my surgery on Friday (unrelated, but needs to happen before I begin the new medication) if I still need to do a muscle biopsy – so they can do it at the same time. Other than that, I’m done! Brad and I go back to meet with the Rheumatologist on August 25th for a long-term treatment game plan and I might even begin my treatment as early as the 17th.
Even though it stinks to be going through this, I am grateful for all the information. It feels really good to know that I’m not just “getting old” like I thought and I’m not as weak and out of shape as I thought. I am excited to turn 30 feeling great and with lots of good things to look forward to!
Thank you all for you positivity and support. I appreciate it more than you know!!!
Lots of love,M