Lucky, very lucky!
I have been very lucky in the last week or so. The surgery I have to have ins't as invasive as it used to be, I have been gaining weight. My CF Challenge (read about it HERE) that I blogged about yesterday has gone into effect, which means I'm doing all my meds for the next 3 weeks! Maybe by the time the three weeks is up, our team will raise another $100, so I have to keep going. I know, I could just keep going, but I'll prolly skip my afternoon ones, or at least my feeding once I can.
I even got to jog one day last week, since it was warmer. Then this weekend I had a CF related Arthritis flare up (When my joints freeze up and I get hive/spots- picture of what they look like->). It only lasted like 24 hours ish!!!! I was soooo happy! Last time this summer during "Hairspray" It was off and on for at least a weekish, which of course, my friends there helped me out a lot.
(read about my last bad flare up- and all the details about my CFRD- right here! )
But when it happened this weekend I was at my boyfriend's house (note: he lives 20 minutes-one way- from me). Well, I couldn't drive home, and couldn't move much. He and a friend of ours drove to my house and brought my meds for the day to his place, so I wouldn't miss them.
I even had a customer (that two weeks ago forgot to leave the receipt with the tip on it) come in the other day; he realized his mistake and gave me double tip for table!
Tonight, I have a night class for Real Estate. I have been wanting to get my Real Estate License since I was like 15 years old. I'm finally taking the classes now, before I start my Masters in Social Work I wantto get my license.
Maybe, it will work out so I can work in Real Estate while doing my Masters! Oh, and Grad School Applications are getting filled out now!
I have been very lucky in the last week or so. The surgery I have to have ins't as invasive as it used to be, I have been gaining weight. My CF Challenge (read about it HERE) that I blogged about yesterday has gone into effect, which means I'm doing all my meds for the next 3 weeks! Maybe by the time the three weeks is up, our team will raise another $100, so I have to keep going. I know, I could just keep going, but I'll prolly skip my afternoon ones, or at least my feeding once I can.
I even got to jog one day last week, since it was warmer. Then this weekend I had a CF related Arthritis flare up (When my joints freeze up and I get hive/spots- picture of what they look like->). It only lasted like 24 hours ish!!!! I was soooo happy! Last time this summer during "Hairspray" It was off and on for at least a weekish, which of course, my friends there helped me out a lot.(read about my last bad flare up- and all the details about my CFRD- right here! )
But when it happened this weekend I was at my boyfriend's house (note: he lives 20 minutes-one way- from me). Well, I couldn't drive home, and couldn't move much. He and a friend of ours drove to my house and brought my meds for the day to his place, so I wouldn't miss them.
I even had a customer (that two weeks ago forgot to leave the receipt with the tip on it) come in the other day; he realized his mistake and gave me double tip for table!
Tonight, I have a night class for Real Estate. I have been wanting to get my Real Estate License since I was like 15 years old. I'm finally taking the classes now, before I start my Masters in Social Work I wantto get my license.
Maybe, it will work out so I can work in Real Estate while doing my Masters! Oh, and Grad School Applications are getting filled out now!
Cheriz,
ReplyDeleteI'm just visiting your blog site for the first time after googling CF related arthritis. My son is 8 with CF and was diagnosed in March with CF related arthritis after MANY episodes of a rash very similar to the one pictured above. This is the only picture I can find of this rash. Does your rash every change? This morning he woke up with what looked like "whiteheads" on his face. Yesterday he had some on his legs. Usually the rash is concentrated on his legs with only 1 or 2 on his face. The pain is usually just in his legs, but yesterday he complained of his elbow and hip. He also has Celiacs Disease. None of the doctors seem to know what is going on. I would appreciate your input on exactly what your symptoms are. Is there any rhyme or reason to your flareups?
Hi Jenn, Sorry about the late reply. I didn't see your comment until now. Poor lil guy, I never had whiteheads, etc. But I think it is different for everyone. I have pain in my hips, legs, feet the most. When it has gotten really bad- what I call Mummified- and I can't move It can affect pretty much every joint including my fingers. My rashes typically always look like this. But I have never been offically daignosed with CFRA, but have been tested and ruled out for everything else, and therefore docs all have said they are sure it is CFRA. If you want to see more photos, etc click my Arthritis label on the left. I'm not sure if your son is experiencing CFRA, but could be. I have lots of stomach/intestine issues too. I was just ruled out for Celiac's and Crohns. I get CFRA flare ups, when I'm over-exhausted, done too much, and I'm stressed out. It started when I was 12. Hopefully you can figure it out. We just call it my mummy disease, and spend a lot of time relaxin watching movies when it happens. Not sure if this helps, but it may make your son feel better to know it happens to others. I've found when I don't do too much (like go to school full time, work to waitressing job, and do extra cirriculars)- I'm not reccommending limiting a lot, but I tend to really overdo it sometimes. I also try to make sure I sleep 8-9 hours a night and eat healthy. But otherthan that not sure. Good Luck! Hope your son doesnt keep having flare ups!
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