tag:blogger.com,1999:blog-552096949367672941.post5710447128176565271..comments2023-09-12T22:38:23.094-05:00Comments on FINDING LANA: ENTRY # 10 - Addison's Who??Lanahttp://www.blogger.com/profile/14422413007128219320noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-552096949367672941.post-79140695019085629052011-03-15T13:09:47.889-05:002011-03-15T13:09:47.889-05:00MichaelO, when I began reading your blog, it cause...MichaelO, when I began reading your blog, it caused an ache inside of me because I feel for you. My kids were (I think) in 5th and 8th grade when I became so sick with Addison's (before diagnosis and treatment).<br /><br />I remember so clearly how we tried to shield the kids. We try, but there's just not enough shielding to prevent your kids from knowing something is "off." Sometimes, a simple answer is the best and satisfies them. As they get older, they will learn more and more about Addison's. They will be stronger for it. I promise. I have 2 kids who did go through hell over some of this stuff, but they are beyond their years in wisdom and compassion.<br /><br />This is an entire other story, but when I got sick, I was the bread-winner. My Addison's Crisis had gone on for too long before they discovered what was wrong. It affected my internal organs, etc. (all is ok now) but it took a year to recover from being so sick for so many months. We had to change everything - sell our home, and on and on...I wasn't even able to work any more, much less earn the six-figured income. However, fortunately for me, my husband does have a great job in a stable profession - but the Harris County Sheriff's Dept does not pay as much as our established litigation support business had been paying me. But, my deteriorating health did impact our lives in a huge way. If I had received an early diagnosis, things would not have become so dire.<br /><br />The good news is, after all of our struggles, today, my family is better off than ever. Addison's forced me to take stock of my life. I was forced to make changes I might not have ever made. It gave me the push to pursue my art and to live more passionately, yet on more level ground. Life is all about feeling. For those who avoid feeling...life hasn't even begun for them. Addison's will bring a lot of mixed feelings into your world. Explore them, don't hide from them. Since you are a musician, you're probably ahead of the curve in this area. Music requires emotion. But, most people will not be able to understand.........heck, you've already learned that many doctors don't understand this condition, how can friends and family really be in the loop when we can't sort through it all ourselves?<br /><br />I still work. I am the owner of a real estate brokerage in Texas. I am the Broker/Owner, so I have flexible hours...a good thing for me. Life can be tough with Addison's, but take your good days and make them stretch for as long as you can. Take your meds; get plenty of rest with a schedule; stay away from germy people---with love; and keep being real. Your music is as critical to your health as is your meds...give it your consistent attention. Your music is very good. In fact, your experiences probably will make you an even better musician. Just channel all that emotion into musical expression, without fear. It's already incredible. Lana.Lanahttps://www.blogger.com/profile/14422413007128219320noreply@blogger.comtag:blogger.com,1999:blog-552096949367672941.post-67928416903154425682010-08-10T17:24:11.470-05:002010-08-10T17:24:11.470-05:00Jean...your words are wise. I am with you. Addison...Jean...your words are wise. I am with you. Addison's Awareness is desperately needed. I am so sorry that you and your family have had to go through such tragedy to get any answers at all. I was finally told, when I was diagnosed and near death, that this was often diagnosed upon autopsy. I guess that rings true for those of us who become so far gone in their health status that it becomes a miracle to simply make it another day. <br /><br />For your family, the consequences of a delayed diagnosis is beyond comprehensible. Severe brain injury caused by an Addisonian Crisis is a very real danger. The brain, during a crisis, just can't function without proper blood pressure, sodium, etc., and NO ONE around the person suffering a crisis is guaranteed to even know there is a problem.<br /><br />There have been times when I've been so far gone...had my eyes closed and unable to open them because I had slipped into a bad state of an Addisonian Crisis and could not even talk or communicate to tell anyone. Since I've had these episodes, I have learned that those times were the start of an Addison's induced coma and cardio-vascular failure. Why have I been able to get multiple chances to come out of these terrible situations? I only know that I've been given multiple miracles...for some reason. Not without lingering effects, I'm sure you know. I even survived an official Code Blue during a hospitaliation, but every time, I know that the worst could be the end result. For your family, please know that there is not always a solution for this situation...even increased meds are not always a sure bet. Having doctors who are knowledgeable would be awesome. But, I think the "text-book" conclusions are easier and faster. That leaves the Addison's patient in the dust.<br /><br />No one can know your suffering...it is full-fledged and immeasureable. I firmly believe you are doing the difficult thing, but the right thing by reaching out and sharing your story. It is an extreme-wake-up-call that needs to keep sounding loud and clear so more people can be Addison's Aware. Thank you Jean. Please stay in touch.Lanahttps://www.blogger.com/profile/14422413007128219320noreply@blogger.comtag:blogger.com,1999:blog-552096949367672941.post-84125692401096817832010-08-09T16:31:11.276-05:002010-08-09T16:31:11.276-05:00I, too, cannot understand why the medical communit...I, too, cannot understand why the medical community is so slow in identifying and diagnosing Addison's. It is ridiculous. I do have a comment on your post, Michael, when you said that the alternative is death. There is another alternative, and that is the limbo between normal life and death: severe brain injury caused by an Addisonian Crisis. My daughter went to sleep one night, totally normal, but with a respiratory illness, and when we woke up the next day, she was blue, postured, and seizing. The previous year, we had done the multiple trips to doctors, ERs, etc....with no one recognizing that the dark tan and dark skin folds were classic symptoms of Addison's.<br /><br />I think the solution for people who are coming up behind us is Addison's Awareness. Years ago, no one knew about Alzheimers, autism, or any other of a myriad of orphan diseases. I think we need to add Addison's to that list of diseases that have gone from obscurity to everyday language. People need to know the common symptoms of Addison's. Doctor's need to know the symptoms. We need to tell them!Jeanhttp://www.annaleesullivan.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-552096949367672941.post-3427956028576456522010-08-02T15:41:57.771-05:002010-08-02T15:41:57.771-05:00Your journey downhill sounds like so many others. ...Your journey downhill sounds like so many others. Slowly approaching the end while doctors stand by scratching their heads? Why is this? My story is rare amongst a rare disease. I had an early diagnosis. My family doc was partners with an endo, when he had no more answers for my declining condition he consulted his partner and they tested my cortisol/ACTH, amongst a battery of other screens. It was another six months of testing before I started treatment, but I had an idea and some insight to modify my lifestyle. I too could not stand the notion of Steroids for Life. But I continued to decline and had to accept there was no alternative. After all, the alternative is death!<br /><br />My wife and I tried to shield the kids from my condition for a long time. While I haven't been upfront about it with them, they have asked their mom about it. And they, like the rest of us, get to a frustration breaking point. Even with the treatment, I've been diminished more than feeling "normal". I think I'm only now beginning to accept this for my quality of life. For 2 years of treatment, I've taken things day by day. <br /><br />It's really hard to imagine myself 20 - 30 years down the road. It's a little scary when I do. As the major bread winner, it's hard to hear of so many Addisonian's who cannot work full-time. I count my blessings that I got an early diagnosis, as I have never had a crisis and spared damaging my body in other ways. I just hope I can maintain my state of health and continue to provide for my family. <br /><br />My best to you, Lana. And thanks again for sharing your experiences.when the musics overhttps://www.blogger.com/profile/16266298848244629919noreply@blogger.com