Well, if it wasn't for all the red tape with my insurance, which by the way is supplemental in addition to my Medicare and is paid for out of pocket, and then ALSO having to have a referral from my Primary Doctor, not the Rheumatologist or Oncologist that I have been seeing for the Carcinoid Syndrome, I could already have gotten an appointment at Northwestern. The scheduling lady was nice enough to say I could pay out of pocket but that it would be in the thousands of dollars. Sure, like we have that just laying around. And there is still no guarantee that my insurance will cover all of this because 1) it's out of my network (YA THINK!? Since only 5 states have knowledgeable physicians and Michigan isn't one of them and 2) because it's a non-curable cancer. But I'm also told not to get stressed because that isn't good for me either. PLEASE someone tell me how to not stress when I have almost 24 hrs every day to do nothing but think about this? And ObamaCare has made it even harder to get help if you have Cancer or anything else that is terminal.
On a good note though, I took the time and contacted 2 of my cousins to let them know what is going on. I debated because I really don't want to burden anyone or have them pity me. But being cousins, I felt they had the right to know. I haven't heard from one of them yet, but I really wasn't sure I would or not. However, I have heard from the other one and am soooo very happy about that. If you have family members you haven't talked to in a long time, or have a grudge against someone - please make up with them. No one, not you or the other person, is guaranteed a tomorrow.
So right now I'm home waiting to hear if Mike got a hold of my doctor for the referral and also my insurance company (he takes care of all my medical issues). I'm very anxious to see what he has to say when he gets home. It seems like for every step forward, there are 2 or 3 steps backwards.I am just praying that I can get into Northwestern soon and get started on this Cancer treatment.
If you don't suspect, you can't detect it!
Joyce
I'm so sorry for having such a lag in between posts. I think maybe I should take back my comment about trying to post every day, and instead say I'll try to post as much as I can depending on how I feel. And as you can see from the date I posted last, I haven't felt well.
But two good things happened this weekend and I am so grateful for both. First and foremost I celebrated 34 years of marriage with Mike, my husband, soulmate and best friend. We celebrated by going to a Barn Party at a local Nature Center we belong to and had a great time.
The other GREAT thing that happened finding out I FINALLY have a doctor to see me for my cancer. Our family friend (I have mentioned him before) that is a doctor, has gotten me in to see a Dr. Robertson at Northwestern University of Chicago, in Chicago, IL. I am beyond ecstatic!!
This doctor comes highly recommended in the field of Carcniod EVERYTHING! I found a wonder write up he did for the American Family Physicians and am including the link since it's so informative. http://www.aafp.org/afp/2006/0801/p429.html
That is about all I have because as usual on a weekend, I overdid it and am paying the price on Monday but I'm fine with that.
Please remember - if you don't suspect it, you can't detect it!
Joyce
PS - PLEASE, PLEASE spread the word of my blog to your friends and relatives. Carcinoid Syndrome stays undetected and the life you save by sharing may be someone near and dear to you!
I've been having these chest pains for a while now but really didn't give it much thought since I have really bad asthma and it's been so hot and humid here. I wake up every day feeling like an elephant is sitting on my chest and I hack up what is similar to a hair ball almost daily. Lovely - NOT! Anyway, when I was diagnosed with the Carcinoid Syndrome, I was also told I had a heart murmur. And just a month or so before that I had been diagnosed with a Hypertrophic Left Ventricle. Well, yesterday the heaviness would not go away and I was having chest pains on top of that all afternoon. I HATE going to the hospital but Mike insisted on taking me to the ER, where they decided to admit me for observation overnight. Now I'm sure if you've ever been in the hospital you know you get no rest at all. I was so glad when they didn't find anything and that it is just "another symptom" of the Carcinoid Syndrome and that they let me go home super early this morning, as long as I agreed to bed rest. (like I can do much else).
I know - I still need to add the rest of the Facebook posts but it will probably be later in the week. I'm super tired and now even more behind on my Dollhouse World schedule.
So that's the short update for today.
Remember - If You Don't Suspect, You Can't Detect It!
Joyce
