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Current Topic: Kelli in Alaska

OK, time to introduce myself. My name is Kelli and I live in rural Alaska. I developed lupus symptoms in my early teens but because we didn't have much in the way of doctors where I grew up, no one put the symptoms together. I finally had a chiropractor say "gee, I don't think this pain is normal, you should get an ANA test- it went from there. After 6 yr.s I finally got a diagnosis. Things got bad enough I had to retire 4 yrs. ago at 35. No matter what we did we just couldn't get things under control enough and I startedhaving liver involvement and sick more and more. I laughed when my doctors said "so, maybe you could fall back on another less stressful career, what did you do before you were a prison counsellor?LOL I was a child abuse investigator and case manager for years....UMMMMM ok, don't think that would be a good idea-DUH! My hubby was kind of glad tho because we now had answers and I could stay home with the kids, but I've gained so much weight and miss who I used to be. The psych. stuff is frustrating because I KNOW about the depression, stress, etc... do the guided exercises and the practice techniques I've been preaching for yrs., but it's hard when your kids say "are you ever going to be NOT sick?" Priorities have definately changed. It's one day at a time, sometimes one hour at a time. Thank the Lord Ihave the family I do. My kids (2 teenage sons and a 4 yrl. old retirement suprise daughter)say... "Well Mom, we don't mind having tohelp more,maybe we wouldlnl't be as well rounded or as kind, or maybe you would have had something worse" Talk about keeping me grounded! Out of the mouths of Babes!!! The guilt over having tochoose how tospend what we call my "jellybeans" everyday gets frustrating tho. Do I cook, try sometime playing outside, or shop? Is is worth it to try to push and get things done,or try to rest and wait it out til Ifeel better? Sometimes my daugther rideson me as I crawl (literally-I tellher its practicefor her own pony) from room to room, just so I can be with them.We try to laugh when my hair falls out, or they try to weasel something out of me when I'm sleeping or my memory is really bad. My husband calls me his beautiful blueberry because I feel like the bloated blueberry girl who stole the gum in Willy Wonka and the Chocolate Factory! We even call my dad OOmpa.We try to take the laughs where we can. Onething that helps is that my hubby(who is almost 10 yrs. my junior) lets me vent. I'll ask for a have hour for it and he'll let me rave and will sympathize, and soothe and take the tears and anger, then if it's too much he'll say... okay...hit my guy word limit for the day...make sure you tell me the rest next time." I know it's hard on all of them, and we arehonest enough to know that they(including me) need time away from it, and time to talk about it. Sometimes, they will all crawl into bed with me and we will have game tournaments, or color, or shadow puppets,or simple things like that. Sometimes it gets scarey, especially when hubby is out of town for more than a week or so for work, and I plummet quickly- hate those ER trips when the doc says...sorry...we just don't know what to do- you're too complicated for us here. LOVE living in the sticks, eh?! But I've read some great books lately, and my husband may be getting anew schedule, and believe it or not, one ofmy dogs has recently been diag. with Lupus too- discoid blisters, fatigue and all. So now, he hangs out next to me and sometimes only me- It's funny how he seems to understand and I can tell when he starts to flare too! Our priorities have changed so much, I've discovered I'm the toughest person I know, I actually like who I've become though all this on some level, and I have to believe that the Lord is using this for some purpose. We were ableto take in 3 homeless teenagers (1 was preg.)for a while andhelp get them safe and supported and turned around(they still call and come by) I would never had had the time before, nor my husbandthe compassion when I was well. I hope my kiddos have learned from things like that. Wel

I also live in Alaska. I have had lots of problems with the doctors not helping much. They are frustrated and call me the complex case. ahaha . I am on the mainstay of meds for this and yet they dont want to call it what it is. I have good and bad days and just want to sleep and see if it helps but I am also a realist. I work alot as I cannot sleep anyway which doesnt help. I am looking to just atleast get a seal of approval for diagnosis and maybe my stress will decrease. I have a great family too gives me time when they know I need it. It is nice to see there are others out there with the same issues and can understand as when people look at you they see "nothing wrong" but boy do we know the difference.

I too am from Alaska. I too have had no luck finding a doctor that doesnt look at me like I am crazy as I try to explain and even remember my symptoms. I can be fine and all of a sudden I start to feel the pain coming on and my 1 finger swells up so bad I cant bend it. Or maybe it is one whole side of my body. Maybe it is my knee or knee(s) that are so sore it feels like someone has taken a baseball bat to them. It is almost impossible to get out of bed to go to work. To anyone in Alaska....is there anyone that you would recommend? Anyone who understand anything about this? I dont want to be on random "maybe this will help" meds. I just need some help & understanding of what I am dealing with. My ultimate fear is that if this continues to progress I will be unable to work in just a few years and I am only 39 years old now.