Picture of us after our Anniversary dinner...
So Chris and I celebrated our 3 year anniversary on June 28th... with that we also celebrated on June 30th of 3 years since I've been sick. I can officially say that this was the first time we have had a semi-healthy anniversary. We are finally on our track to figuring out a normal routine. Last week I was even able to organize our entire kitchen... i.e. the pantry and my spice cabinet. So better now! :)
For the most part I've been feeling fairly good, although I do wake up with swollen joints and tenderness due to the humidity, but I find it easier to deal with than when its really cold, so I'll take the humidity any day. I met with my doctor and its hard to believe that its already time for another infusion. We're still working out the "kinks" in the timing. So we're going to try 4 1/2 months. The earliest I can get my infusion is 4 months. I'm hoping to not have to do that but we'll see.
So I have infusions starting in a week. As of this past week, I can start to feel the fatigue coming on a little bit at a time and my dermatoymyositis started to show itself a little bit in the form on my eyelids getting pink. So although I'm not looking forward to my infusion... I think its coming at a good time.
I'm going to Iowa next week and I'm REALLY looking forward to spending some quality time with my mom. I will also be able to see my Dad for a night before he goes off on a business trip, which is great since I haven't seen him since April.
Chris is back at school and things are going really well. He seems to be really enjoying his classes. Hard to believe he already has a full year behind him. We stayed here for the fourth of July. It was nice to relax. We spent time with Chris' mom and then on the fourth we went to our friend's the Nelsons and grilled out. They just had a baby boy, so it was pretty low key.
Hard to believe its almost August. We are hanging in there. Although my disease doesn't have a "remission" status, it does have a "controlled" status. So things are looking better. I'm slowly starting to gain a little bit of confidence back as well as the prednisone weight is SLOWLY coming off. The good news is that my face is almost back to normal. :)
Hi Maggie,
ReplyDeleteMy name is Michelle and I live in McKinney, TX outside of Dallas. I can't tell you how happy and encouraged I was to find your blog. I have spent the past 13 years trying to figure out what auto-immune disease I have and was just diagnosed with Antisynthetase syndrome. I am 39 now so, I was only 23 when this began but already had 2 children before I got sick. I have ILD, Pulmonary Hypertension, Congestive Heart Failure, Raynaud's, Colitis, sicca, skin rashes... and the list goes on. I had 3 heart ablation for atrial fibrillation in 2003 and that is when things started going downhill. My medical issues were blamed on the doctor because he burned my pulmonary vein closed during the ablation. The doctors at UT thought he burned my heart so severely that it caused the heart failure and lung problems. I'm so lucky to have UT Southwestern in Dallas and they opened my vein with a stent but, my breathing did not get any better. I was in the hospital all last week and they told me I had ILD and put me on high dose steroids. I had been on 10 mg. for a year to keep things at bay but was weaning off and was at 4 when I had the flare last week. I loved reading your blog and my ring tone is "her diamonds" and I didn't even know anything about the singer's wife. My husband kept telling me the song was depressing and to change it. Now I know why I related so much. Like you, I find my strength in God. I have almost died several times over the years and I know that God has a plan and purpose for my life. As I type this, my doctor called to tell me to go back to the ER for IV steroids. They are just now trying to figure out the best way to treat me. Again, your story gave me hope and I am still in shock at the similarities. I would love to hear from you and I will keep looking at your blog for updates. Blessings, Michelle Moody (m.moody@mac.com)