Thursday, January 30, 2014

On the Upswing?


I am always insecure with my health care progress. I do acknowledge what progress I've made, but I can never feel like I'm ready for the big celebration. I did get over a giant hurdle though, which is worth mentioning. I did get another doctor to agree with me regarding a return visit and further testing. I will be returning to the clinic soon and I hope I get answers. 

I am trying to coordinate with my doctors for several weeks now. I have these moments of uncertainty because when a few things seem to be going well, then there will be some sort of hold up. I usually hear back from my doctors immediately, but some days I won't hear back for days (which is like months in the Mayo world). I try not to read into it too much. All I can do is continue my research and prepare for my trip out. 

I was able to breathe a big sigh of relief though. Many people never get this chance and I am very grateful that I do have this opportunity. 

So to my dad... I know you don't read this because you don't understand the "interweb" and blogging, but thank you for helping me out with my medical costs. I know you don't understand the medical world either, but I hope one day you'll understand (somewhat) why going to Mayo (again) was necessary. 



Thursday, January 23, 2014

This Wonderful Thing Called Postcrossing...


I found Postcrossing a few years ago. I was a little hesitant at first because I didn't want complete strangers to have my home address, but it's worth the risk (and you can always get a P.O. Box if you are really concerned). Actually, most people you get assigned are several thousand miles away. I wish I had more money to send more cards to people. Postage sure adds up quickly, but knowing my card made someone's day is well worth the money spent. 


I did it for a while and received postcards from around the world. Some people told me about their lives, while others just said hello. I decided to activate my account again and am excited to see what cards come in the mail. 



I recommend trying it if you like snail mail. You don't have to meet a certain quota. If you decide to stop for a while, your account automatically becomes inactive, but you can always go back at any time and reactivate it. And I didn't have many people who didn't send me cards, nor did I have many of my cards that got lost in the mail (maybe one or two).



It's free to join, so check it out!









Wednesday, January 22, 2014

Sunday, January 19, 2014

Living with a Chronic (Unknown) Illness

It's been so long since I've felt "normal" and I forget what that feels like. I always hope that it will magically go away, or that I will find that one doctor who has all the answers. Both have yet to happen and I'm really banking on the latter. 

I don't look sick and I don't have anything on my scans, tests and lab work that are abnormally high or low. I have some borderline highs and lows on my lab work, but nothing adds up. I just have a random collection of symptoms and have some mild discrepancies on my tests. 

I've seen so many doctors. Most of them believe I am just attention seeking, or even drug seeking. Some think I'm delusional and depressed. A very small percentage actually wanted to help me and believed there is something going on, but cannot pinpoint it. 

I can tell you it's not (what I call the BS diagnoses); IBS, chronic fatigue syndrome, depression/anxiety... Let me explain. Why I consider them bullsh*t diagnoses is because a lot of people get that diagnosis thrown at them right away when they have something else. I don't know how many times doctors have said I have depression and IBS. I've tried several medications and diets knowing that the diagnosis was wrong and that they needed to look again at my records and run more tests. But many times in the early stages, you have to try what they are suggesting or they won't help you out anymore. 

Other people feel like I should be better by now or that I'm already better. Some people forget I was/am sick in the first place. They don't understand why I can't work (they don't consider my self-employment a job) and they believe I'm just being lazy. While others bluntly blame me because apparently I brought this on myself (according to them). In their eyes, there has to be a reason and a learning experience... I think that's BS too. 

I was planning on going back to Mayo this year, but unfortunately, I don't think I'll have the means to do it. It's a long story, but it all comes down to money and people not wanting to do their part and/or help out. I don't ask for much, but when I do need help, it seems like everyone runs the other direction.

I feel if I were to get a diagnosis and get better, so many things would immediately change. I would finally get out of this vicious cycle and maybe start to feel normal again. 

Yes, there are times when I get overwhelmed, upset or angry about my situation. I get frustrated that people hold me to an unreasonable standard or unfairly judge me. And I am disappointed with how many people have left me behind. I definitely hate when people insinuate that I'm don't deserve any better. That I just need to deal with it and settle. But I have to remind myself that I still wake up everyday, so I need to make the most of it. It's okay to be upset because it is a normal reaction to this turmoil. I have to remember not get so lost and engulfed in it. 

I'm trying not to make this post seem like a downer. I just wanted to explain my perspective on it. And please comment if you are going through a similar situation or if you have a diagnosis. Or if you know anything about autoimmune diseases, especially Sjogren's syndrome, scleroderma or primary biliary cirrhosis. 

I'll leave you with this quote from Audrey Hepburn, "Nothing is impossible, the word itself says 'I'm possible'!" 



Saturday, January 18, 2014

Welcome

The first post is always the hardest one (for me). I never know where to begin. I had a blog before and then this last week I've tried putting together another, only to trash/delete them. I've settled on this one and am going to stick with it. 

You can read more about me under the About tab.

Thanks for stopping by!!