Saturday's Winding Thoughts

This past week was more than hectic. Between the two of us, we had 3 visits to do tests and doctors visits in Dallas, and then a new doctor for Jim here in Ennis. In the middle of all of those, we had news that I am losing my insurance at the end of the year, our car acted up, I spent hours on the phone getting the insurance company, the doctor’s offices, and our pharmacy to do their jobs. We actually got our rugs cleaned yesterday, even while dealing with both of us in pain, and being worn out from the previous 4 days of being so busy. I was thrilled to see Saturday morning roll around for a change.
If I told the entire story of how many phone calls I made this week to the insurance company, to doctors offices, and the pharmacy, you would probably not believe me.
I think the one thing I got out of all of it, is that I spent MY TIME doing THEIR JOBS! That is what I just don’t get. All of us spend our hard earned money to pay for services, yet why is it we have to stay on top of people to make sure things get done correctly. If I had caused some of the issues I had this week when I was working, I would have lost my job for sure. I was flat LIED TO by one doctors office in Dallas. They claimed to have spoken to my insurance company, and that my insurance told them they would NOT pay for a very expensive evaluation that the INSURANCE COMPANY requires before I can have the pain pump surgery. I guess they thought they would collect almost 300.00 from ME, and I would not check up on them. I made a call that afternoon to my insurance company who first of all said they NEVER TALKED to anyone from that doctors office, and secondly, that visit WAS COVERED! Sure enough (as they HOLD MY FUNDS UNTIL INSURANCE PAYS), that visit will be paid for by the ins. company, all but my small co-pay! I have to wonder if they do that knowing the insurance does not pay all that well, so they tell certain patients that collecting cash from the patients knowing they must have that test first, before the can proceed.
That was just one instance, not including the other several things like another doctors office not faxing what the insurance needed about a new medication that I needed approval on... that the pharmacy first messed up by not sending the form to the doctor. Then the doctors office in spite of several phone calls from myself and my insurance did not fax over what the insurance company needed in order to approve the medication. And I have been waiting now for almost 4 weeks and it still is NOT approved.
Then another physician has a new nurse, that has been at the office long enough to know 3 of my medications come from a specialist pharmacy in Dallas. The doctor has to approve the medications, the pharmacy has to pick those up, then process them, and then MAIL them to me here in Ennis. Yet, the past two months I have had to make 2 follow up calls to remind the nurse that I am in Ennis, and she needs to do her part a couple of days earlier than some, because of them having to mail them. She messed up last month and we had to make a rush trip to North Dallas to pick my medications up because I would be out before they could get them to me. I have been seeing this doctor now for 4 years, and I have been getting my medications the same way all that time. Yet, I still have to make follow up calls in order to get my meds on time.
Then Thursday we both had visits in Dallas. Jim’s was first and we were told it might take over an hour to do all of the paperwork. So, we scheduled my MRI/arthrogram, which was in East Dallas, and his appointment was in West Dallas, several hours later, so we would not conflict with mine. Well, his paperwork only took about 30 minutes, and we had 3 hours or more to spend, waiting on mine. Well, we went ahead thinking maybe they might get me in early, and they could on the arthrogram, but not the MRI, which had to be done within about 30 minutes or so from the contrast being put in my shoulder. Thus luckily it was a beautiful day, so we spent a couple of hours just sitting in the sun, reading and resting in the parking lot of the hospital. The MRI actually ran late due to the patient in front of me, so it was at least 2:30 before they got me in (I had been told it would be at 1:30)... but we managed to get out of Dallas just before rush hour got really bad. We were totally exhausted by that time, but got home safe. Our car overheated on Jim Wednesday afternoon. We thought it was a broken radiator hose or the thermostat stuck wide open. But, hopefully it was just because of it being such a small radiator, it was a little bit low of water and antifreeze, so it just needed more of those. So far around town it did not overheat on us, but would did not want to chance it in traffic in Dallas, so we took my Mom’s car instead. Jim’s not sure about his new doctor. I went with him and can relate. The doctor changed his medication, to something Jim had never had, but did NOT explain anything to him, like it would take 3 to 5 days before it built up enough to work. He also did not tell him some of the bad and adverse side effects. Things that any physician, especially a new one, giving out a new medication that has some potentially adverse side effects, should tell every patient. So, as far as a doctor, he seems to be good, but he has no communication skills with patients.
The good thing is that I am a step closer to finding out whether I do have another tear or more tears in the rotator cuff in my shoulder, plus arthritis bad enough that I need a shoulder replacement (I know that does not sound good really, but I want to know for sure what the problem is), plus I am now going to be where I can have the “trial” for the pain pump. Once I have that trial time, and it works, then I can have the surgery, which from everything I have heard from all of my physicians, along with all I have heard from patients, and online, I will be much more less in pain, with much less medication with the pain pump. So, even though it entails a major surgery, the end result is a very positive thing for me. The issue for me is that my chronic pain is from Lupus, degenerative joint disease, degenerative disc disease, & other issues, such as probably Rheumatoid Arthritis. Thus, even replacing the shoulder, and all of the surgeries I have already had does not stop the pain. There is nothing they can actually “fix” that can stop all of it. They can stop the shoulder pain by a replacement, but my body will still hurt, first due to the Lupus. My other joints like toes, feet, ankles, wrists, fingers, hands, etc. still will give me fits. So will my neck, etc.... thus a pain pump for me is the answer. Hard to accept for sure, but I totally understand why.

In between all of the above, I also spent several hours online researching a new health insurance policy to begin on January 1. The issue with that is I have to try and make sure all of my doctors take it, and all of my medications are covered. Not an easy task, but it seems I may have found one. I need to verify for sure my doctors are going to take it, along with also making sure they are going to cover my medications, but the indication online initially makes me think this one make work out. ☺ A very good thing, since I have several specialists, and quite a few medications.

I could moan, groan and fuss. Believe me I was not a very happy camper at times due to those that are supposed to do their jobs, seemingly not doing them. Yet, it seems that I am definitely not the only one. There are many, many people out there going through the very same as myself, and some much worse.

Yes, the pain is bad. Yes, fighting with insurance, pharmacies and doctors offices is frustrating. Yes, having to go to Dallas more than once a week here lately is an exhausting situation.

But, I have to accept that is a part of my life. Even though I don’t know why I am dealing with the physical realms of these chronic illnesses... only to think it opens doors for me to tell others my story. It opens doors to new places and people online. So, there is a reason for it all.

When we are in a rough patch, it seems it is never ending. Yet, the good times in life always prevail. Once the rough patch is over, what comes next is life at its finest. ☺

Again, I will make two trips to Dallas next week. I soon face that trial couple of days for the pain pump. Then I will spend time again in surgery and recovering, but in the hopes that the results will be very good.

I take one step at a time, one or two feet up that mountain, never looking down, always looking up at where the peak it, and the light shines above....

Extremely Important to take Action - Pain Medications & FDA Meeting on October 8th

http://www.painfoundation.org/take-action/natl-efforts/rems/

 This is EXTREMELY IMPORTANT! The meeting about Pain Medication and A Chronic Pain Patient Bill of Rights will be put through the FDA on October 8th! All of our letters need to go into them before this important meeting. The URL will take you to the American Pain Foundation page that tells you exactly what steps to take. All of us patients, family, spouses, caretakers, doctors, and all please take time to you your letters in. :)

Can't use a proper medical term, VAGINA, on a video online or on TV?? CBS is nuts!

Talk about double standards! A dear friend of mine online, who is a OB/GYN and has written a book for women, has just began her new book tour. Lissa Rankin is a well known, intelligent, and just amazing woman, that has a website called "Owning Pink". Her website is just incredible, and women of all ages would greatly benefit from her information there, as well as all of the awesome women who have joined forces there with her.

On her book tour, she was asked by a head person at CBS to do a video spot about her book and the tour. There had already been another video done by a guy and the title of the video is "15 Crazy Things About Sperm" Here is the URL: http://www.cbsnews.com/2300-204_162-10004933.html.

It seems it is perfectly okay to use the term "sperm", or other related words, such as "Penis", "erectile dysfunction" which we see and hear all the time on commercials, but the word "Vagina" was said by another CBS person to be too "racy" for them to put up Lissa's video on their website which is: "15 Curious Things You May Not Know About the Vagina". Now tell me, why is it perfectly fine to use the term sperm, and not Vagina, when it is not slang, it is a medical term, and she in fact is an OB/GYN??!! It is pure sexist as far as I am concerned and women should be outraged everywhere. In fact men should be outraged. It is purely stupid. They can show bloody, horrible violence all over the internet and on TV. It is fine to show half naked women in movies for TV, and advertise medications for Erectile Dyfunction, even as far as saying "Be ready at any time", plus Jimmy Johnson advertising pills and there is even a RACE CAR for "Extendize", but the word Vagina is taboo? This is NOT the stone ages. This is NOT some slang term, and besides it is a video on CBS news on line not in some prime time slot on TV, which should not make a difference at all. Here is a post from Lissa Rankin, where you can read the entire story, and decide for yourself. But this is plain sexist, and I hope all of you stand up and be counted for. After all, all women have them, and there is NO good reason not to use this term.


http://www.owningpink.com/blogs/owning-pink/sperm-trumps-vagina-wtf#comment-8092

Lissa Rankin "New Book Tour" "What's Up Down There?"

There is an incredible woman who is now an OB/GYN that is just a blessing to all who get to know her. She has just began her book tour, for her new book "What's Up Down There?" Lissa is a down to Earth, intelligent lady, that gives us, as women, hope, encouragement, answers, and praise, when we need it the most. Her site and blog, "Owning Pink" is also incredible. There are so many wonderful ladies who are members, that care about one another, and encourage one another to do more, to be more, to live your dreams out, no matter what those dreams might be. After getting to know Lissa, and several more of the women there, I have just totally been inspired to write more on my book. :) When things seem the bleakest in our lives, whether it stems from stress, family, children, spouses, jobs, home, school, illness, or the other 1 million and one things women do to make everyone elses' life better, we often forget that we truly need to be taking care of "us" first. Women as a whole tend to put their own needs on the back burner, so that our children, our parents, our spouses, our friends, jobs, and much more are enlightened and happy.
Then we come to a place that we start to feel "burned out", "spent" and used up. At that time is when we grow into a place of darkness, and we begin to try and find out why we feel so completely useless, when it seems all we do, is be "useful" for all that are around us.

As women, sometimes we just do not "see" our own needs. We tend to think that the more we do for others, the better we will feel about ourselves. Yet, without tending to our own bodies, minds, souls, and spirits, we are spiraling downward, using up all of our energy on others, and giving to ourselves nothing. Sooner or later we often find ourselves fighting illnesses, depression, & anxiety.
We must learn to follow our own dreams, give ourselves a break, let ourselves off the hook, and allow our own lives to blossom. When we feel whole as a person and woman, then we can do more for others. But, if we allow ourselves to put our needs at the very bottom of that long list, we often are resentful of the very people we love most. Love yourself enough to take care of you, then you will have enough time and love for those around you.

We also have a tough time saying "No!" No matter how full and busy our lives are, many times women just continue to say "Yes, I can" to all requests put on us by jobs, family, spouses, children, and the world. Why shouldn't we be able to do it all??? We are "wonder women" aren't we? Yes, many of us are truly "Wonder Women"! We say yes to everything. Then we wonder why we are exhausted, sick, or in pain. We try and figure out why we are angry or upset, and just can't fathom why, when everyone around us is have their needs met, we are not happy.

Take a very good look in your mirror. Ask yourself when the last time was that you said "no", I can't go to the soccer game tonight, I need to stay at home because I have lots to do, or I am just too tired this one time. Or I need to take a rain check on the Tupper Ware party, or let's postpone the yard sale for two weeks, or let's go out tonight and eat, I don't feel up to cooking. When was the last time you did something totally "selfish" just for you? Had a manicure, had your hair cut, permed or colored (not by yourself, but at the beauty salon), bought yourself a new dress or shoes, took lunch hour for LUNCH, NOT errands, asked the kids to put away their own clothes, asked your spouse for a dinner date, sat down all alone and read a book, or watched your favorite show, did your nails in a new color, or any number of things we should do just for us???

"Owning Pink" and the ladies there, is and are about taking care of you and your needs. Everyone there has been through tough times and wonderful times. The women there understand one another, they listen to one another, and they even meet physically in some places, like for instance, there is a "group" right here in my own county and home town that have meetings on occasion.

I will end for now with a couple of links to go to. Lissa has a FaceBook page, plus she has her "Owning Pink" website, and her new book just went on sale, and is at Amazon also.

Please take a moment to think of something nice that you can do just for you today... even if it is just a 5 minute breather, totally without any noise or interruption to tell yourself, you are truly "worth it". 

http://owningpink.ning.com/

http://www.owningpink.com/

http://www.facebook.com/?ref=home#!/lissarankin?ref=ts


http://www.owningpink.com/node/1241

Clinical Trials on Tenazumab for Osteoarthritis pain halted by FDA because of working "too well".

http://www.msnbc.msn.com/id/34276015/vp/39428302#39428302

How stupid is this??? They find a medication that can take the pain of osteoarthritis away so well, people get their lives back, but the FDA feels it is working "too well", thus they have halted the clinical trials until they can deliberate over it. Why not put a strong warning on the medication, that if you have advanced degenerative joint disease, where the joints are almost worn out enough to require replacements, that you need to not go back to joint intensive type activities, such as jogging, running stairs, running, playing tennis, or any kind of physical activity that puts lots of added stress onto the joints??? Sure we are going to do more once we are out of chronic pain somewhat, but to take it completely out of clinical trials because it works so well seems absolutely stupid to me. One story about it is above... and here is another link...
http://www.eurekalert.org/pub_releases/2010-09/uoc--pis092810.php

Series of Videos From the American Pain Foundation - These are very beneficial

http://www.letstalkpain.com/painmedsafety/

Once again the American Pain Foundation has come through with great information for all of us suffering from chronic pain. This series of videos goes through how medications effect our lives, the positive aspects of controlling pain, from medications to the use of implantable pain devices, all of these are full of informative and good information for pain patients, spouses, caretakers, family and friends. I urge you to take a look and listen to a few of them. I have already listened to numbers 5 and 6, about the implantable devices, since I am facing having a pain pump put in very soon.


I already learned a great deal more, than I already knew from my own research. :) Rhia