A Good Night’s Sleep

I had a hydrotension done two weeks ago. Since then, I had not only been in pain but also unable to get a good night’s sleep. I rested to be sure. I laid around reading or watching t.v.. Even caught a movie-The Help-if you haven’t seen it, do so now! It’s as good or better than the book. Anyway, I don’t know if it was the pain or the pills but my whole sleeping pattern was off. I would go to be tired at around 10 pm but still be awake at 11 pm. Tired of tossing and turning, I’d get up and try to trick my mind into sleep mode by doing something relaxing. Unfortunately, sleep wouldn’t find me until about 2 am which meant I would sleep until about 10 am. I’m not a morning person so this would normally be cause for a personal celebration but night after night it was wrecking havoc on my body. Finally, last night, sleep found me at about 11 pm and kept me until about 6am. I was tired when I woke up but I was pain free. Yay! So this makes me wonder: If I had been able to get a good nights sleep in the past two weeks, would my pain had subsided earlier? Is may lack of pain today a result of a good nights sleep or merely happenstance?

Today I dropped my son off at school, hit the gluten-free sale at Sprouts, and came home. I put dinner in the Crock Pot, Jamaican Pumpkin Soup, and am making a Pumpkin Mousse with the remainder of the pumpkin. Next? I will take a break and enjoy this beautiful overcast day we’re having in Az. Yes, I’m declaring the rest of my day as a day of rest. I finally feel good and want to enjoy it by doing things I enjoy like reading or writing, or finally getting my outline done for Nanowrimo. I refuse to overdue it today, a mistake I’ve made in the past when I’ve suddenly felt better.

So tell me, what do you do to sleep better when you’re in pain? And what do you do to celebrate when the pain is finally gone, even if just for a day?

Lack of Funding for Overlapping Medical Conditions

Two weeks ago, I was worried about a few things that were coming up. One of the big things was the hydrodistintion that I had done a week ago Friday. The usual and unhealthy way I handle stress is to keep it locked up inside of me. The irritating way my body lets me know it’s had enough is to rebel. This was the case two weeks ago when out of nowhere my IBS acted up. When I first diagnosed with IBS four years ago, it was irritating and inconvenient. Having suffered for the past several years with what I now know is Interstitial Cystitis, the IBS symptoms I experienced seemed like nothing compared to the pain of IC. I’m taking medication to help control IBS and honestly, all thoughts of IBS took a backseat to dealing with IC. While dealing with the symptoms of IBS two weeks ago while dealing with the pain of IC, I became curious to know how common it is to have more than one of these types of diseases. It turns out, it’s a lot more common than I thought. There are millions of Americans suffer from chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome, temporomandibular disorders, and vulvodynia and TMJ. Those of us with more than one of these diseases are known to have what is called overlapping or cormorbid conditions. There are coalitions formed to help gain funding for these diseases and to find out why they so commonly overlap. Here are a few organizations that you can look at if you wish http://www.endwomenspain.org/ and  http://www.overlappingconditions.org/ and http://nwhn.org/overlapping-pain-conditions-women-pain-need-more

According to the research I’ve done on the Internet, doctors are educated to treat the symptoms, not the patient. If the doctor cannot determine what the problem is, there’s a good chance you will be dismissed without a diagnosis but sometimes with the belief of the doctor saying ‘it’s all in your head’-this is a personal favorite saying of mine as I’ve heard it from a few doctors over the past few years. The problem with doctors who only treat the symptoms instead of looking at the patient as a human being is similar to the person who is book smart but not street smart. A good doctor should, in my opinion, be able to look at the symptoms and the patient as a whole person.

Another issue with these eight commonly overlapping diseases is knowledge and awareness of the diseases themselves. There is so little known about each of these diseases and my personal opinion for this is because the eight diseases mainly effect women. The National Women’s Health Network reported in April of 2011 that the average funds allocated for researching these conditions through the National Institute of Health is…$1.33 per affected woman, per year. Yes, that’s right $1.33. Funds allocated for these predominantly female conditions are equivalent to just a penny over the price of 3 postage stamps, 24 cents over the price for a movie rental at Red Box, and over a dollar less than most restaurants charge for soda pop. The National Woman’s Health Network estimates that over $80 billion is spent in health care costs regarding these conditions. Combined, chronic pain is as prevalent as cancer, heart disease and diabetes. The National Institute of Health spends 96% less on chronic pain research. This is appalling to me. There is something we can do to change this. We can call or write our Congressman/woman (www.Congress.org ) to find specifics for your congressman/woman) and ask them to act on the policy recommendations listed under the Take Action section on the Overlapping Conditions Organizations website. They even have a template to send a letter if you’d prefer. The policy recommendations include: cost effective investment in research, education of health care professionals and expanding public awareness. As both women and victims of these conditions we need to stand up and be heard. We know our worth and we are worth so much more than a lousy $1.33 a year.

Please take a few minutes to watch this video called “Through the Maze: Women & Pain”

http://www.youtube.com/CECPW

Hurry Up and Wait

I had my follow up appointment today. I was a bit nervous as to what the doctor was going to recommend since the bladder installations weren’t as successful as we had hoped.

I was also nervous due to a daycare situation that put me in the office five minutes late. Five minutes is late, yes, but not really that unusual nor extreme. When I arrived, I checked in with my least favorite person in the office. She took my last name and then said, “You’re a bit late, let me see if the doctor will still see you,”. Umm…what? She picked up the phone and spoke to the nurse. When she hung up she said, “The doctor will see you, but there are four people ahead of you and it’s going to be an hour wait.” I have really been making an effort to be nice to people lately but I will admit that for all the niceties I’ve put out there the past few weeks, I took them all back at that moment, “I’m sorry? Can you repeat that, please?” I asked. The fool must not have seen the look of death I was penetrating her skull with or she wouldn’t have repeated herself. “So, I’m getting pushed to the end of the line because I was five minutes late for an appointment? Do you realize that on the day of my first appointment I waited over an hour to see the doctor? I’ve also waited over 15 minute’s on other occasions as well, and yet, due to a situation beyond my control, I’m now being pushed to the end of the line for being five minutes late?”  I may or may not have been yelling for the whole waiting room to hear at this point. I have no shame. “We’ve had several people we’ve had to fit in today and you’re the last appointment,” she said. I just shook my head and sat down. An hour and several trips to the bathroom later I was taken to the exam room. Thirty minutes after that I was still waiting. I really like Dr. L and his nurse but sitting there getting more and more angry as the minutes ticked by, I was contemplating getting my hefty co-pay back and seeking help elsewhere. I decided to talk to the nurse before making any rash decisions and plus, I wanted to whine to someone. We had a loud conversation about the wait time outside the patients door where the doctor was. Well, okay, to honest, I was the loud one, she was nothing but understanding and accommodating. Don’t you just hate it when people kill you with kindness when you’re looking for a fight? She won because I found myself back inside the exam room and waited another five minutes or so before the doctor came in, calm but apologetic for the wait.

I discussed with Dr. L how I have had a few really good days but not enough to consider the bladder installations a success. I also told him that it seems I’m worse on Saturday and Sunday’s, the two days leading up to the next installation, He gave me two choices: I can learn how to put a catheter in at home and give myself the treatments twice a week for an undetermined amount of time or he can do a bladder hydrodistention and cystoscopy to look for Hunner’s Ulcer’s. With the latter, I would be in guaranteed pain for about two weeks following the procedure but eighty percent of patients are reported to notice a big difference after that time period. I don’t want to have to play doctor every  few days and do my own installations on an ongoing basis so I chose the hydrodistention, I know there aren’t any guarantee’s but I’m hoping to fall in the eighty percent that are success cases. I read in ‘The Interstitial Cystitis Survival Guide’ that the effects of this procedure may only last three months Of course I’m rooting for longer but…it’s been a long time since I’ve felt good for a week, much less a month and the possibility of three months makes it worth it for me to try. Dr. L also had his nurse show me how to insert the catheter into my urethra so in the future I could do the bladder installations at home, should I get a Flare Up. So, so glad I left my ten-year old son in the waiting room. She was showing me how to insert the catheter and medication while balancing a mirror so I could see my vagina. Although I’m familiar with my vagina, I’d never seen it reflected back at me like that, full stop. Add in the view of my Stay Puff Marshmallow Man thighs and the view of the underside of my food baby and I was horrified. I tried to listen, I really did but I really just wanted her to put the damn mirror down so I could get dressed. Whatever that nurse is being paid, I’m sure it’s not enough.

After that fun, Dr. L came in and told me that he’d kept me so late that his surgery scheduler had gone home for the night. He then apologized again for the wait. I explained to him that the reason I was so irritated was because I felt that I was getting the shaft for being five minutes late when he was late by an hour and a half. I told him that had his office called me to let me know that he was that far behind I would have felt like I had a choice to either come in later or reschedule, He agreed with me and said he’d talk to the office manager about the rude lady at the front desk as well as advising people ahead of time about the wait so they could reschedule if needed. Round trip I was gone three hours for an appointment that I should have been to and back in an hour. I should charge them for my time.