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Thursday, September 22, 2016

Why I'm Annoyed by the Zuckerberg/Chan $3 Billion Headline

You probably heard the news already about Facebook founder Mark Zuckerberg and his wife, Priscilla Chan. They are pledging $3 Billion to "cure, prevent and manage" all diseases in their child's lifetime.

I don't wish to impede their noble goal or discourage the efforts and donation. Obviously $3 billion is a lot of money and it can do a lot of good and any progress made is a positive thing. BUT it's a drop in the bucket compared to what is spent annually by all kinds of organizations and governments working to cure, prevent and manage diseases.

I'm not sure why they think their $3 billion donation and their initiative is going to be the thing that will bring ALL diseases under control. Do they really think that the world hasn't been able to cure, prevent and manage all diseases for want of $3 billion? If it was really that simple it would have been done decades ago.

I wonder how much of that $3 billion is going to be earmarked for migraines? I don't know the answer to that question but what I do know is that it won't be enough to cure, prevent or manage the disease. Even if the entire $3 billion went to migraines, it still wouldn't be enough.

The notion is audacious and a bit absurd, which makes it feel like a stunt, which is annoying to me - someone suffering from disease. I can't help but think the money would have a better chance of doing good if it were focused on a specific disease.

Wednesday, September 21, 2016

Whimsy Wednesday

A humorous look at the way drug companies market to doctors. Some interesting information and a great way to check on what your doctor gets from these companies.

Have a great day!


Friday, September 16, 2016

Chronic Migraines and Fibromyalgia Make Treatment for Endometriosis Difficult

How it all started
After some troubling interactions with my GYN and her nurse since my endometriosis became problematic last year, I decided to start searching for a new GYN. Knowing that surgery might be an option down the road I wanted to make sure I got a great surgeon and someone who was truly interested in endometriosis.

The New Specialist
Talking with my sister, who is an OR nurse in a GYN surgical unit, I learned that there are folks who actually specialize in endometriosis. Armed with this new information, I turned to Google to research the specialty and search for them in the St. Louis area. I found just 3 doctors, 2 men and 1 woman. All other things being equal I chose to start with the woman. Yes, I did chose her because she is a woman. I'm sure the men are just as good but given the choice I'm just more comfortable with a woman.

So far I'm very happy with my choice. I'm impressed by her. She is a fairly new doc but after all her regular training and residencies, she did an additional 2 years of training in endo and fibroid minimally invasive surgeries. She is easy to talk to, respectful, does a good job of explaining things and her outcomes have been great.

Unexpectedly, she gave me an additional diagnosis of Pelvic Floor Dysfunction (PFD). She says this could be a source of some of my pelvic pain. Now, I had never even heard of PFD but was not surprised to hear that my pelvic floor muscle was in a spasm as I've had frequent muscle spasms all around my body for more than a decade. This would be just another muscle joining in. When I went online to research the condition I learned that I have a number of the symptoms associated with the it, including unexplained low back pain. Honestly, it was a relief to have an explanation for some crazy symptoms I've been having.

Treatment Options
At this point I've had all the necessary testing and my treatment options have been explained to me. Now I just need to decide what I want to do. Easier said than done. Here are my options:
1. The medical approach. Take hormone pills to manage the pain.
2. The conservative surgical approach. To have laperoscopic excision of the lesions.
3. Combine both. Have the surgery and then use medication to slow regrowth.

I love the idea of doing medication only. My last GYN had me on a combination pill, which she never should have done because I sometimes have aura. While on it, I did have a lot of relief from my endo pain and other symptoms, plus I even had saw a decrease in my most severe migraine pain. There was no benefit to my frequency and I did still get really severe migraines but not as many of them were in that category. A benefit I have deeply missed since going off them. The trouble with this medication was that I developed daily bleeding after 3 months. My new doc explained that was likely my body's reaction to skipping too many periods and not actually the medication itself.

Things get complicated
She suggests doing a progesterone only pill. I actually picked up the script for it earlier in the week and was freaked out by the informational insert that came with it. The list of dangerous side effects that necessitate immediate medical attention included 8 symptoms I experience regularly between my chronic migraines and fibromyalgia, like severe pain behind the eyes, pain in the lower legs, severe migraine, confusion, trouble sleeping... I don't think I can bring myself to take these pills mostly because I know myself well enough to know I would worry every time I experience these symptoms. Even under normal circumstances, feeling 99.999999% confident my symptoms are attributable to my chronic migraines and fibromyalgia, part of me is fearful when things are really bad. I know the fear and worry factor would ramp way up if I knew it could also be a dangerous side effect to a drug I was taking.

So that leaves me with the surgical option. I'm hesitant about that for a few reasons.
1. My last surgical experience was horrible. Everyone I encountered failed me. Obviously, I've learned many lessons from that and am taking precautions to ensure things go better in the future. I'm confident in this surgeon, the facility and the processes surrounding this procedure but I'm still gun shy.
2. I know that because I live with chronic pain the recovery will be longer than with normal healthy people. But I don't know what that will look like. I've had two laperoscopic procedures before but those did not include cutting into any abdominal tissue. I can't help but think it will be more painful.
3. I'm a little worried that I won't actually get any relief from the surgery. What if I put myself through all the pain, aggravation and expense of this surgery only to find that most of my pain was from this pelvic floor dysfunction? Or worse, what if something happens and I actually make matters worse.

I just want to make the right decision. But I can't know what the right decision is up front, which has made making the decision very difficult. I had originally hoped that I could give myself a few months to take the new pill and try to address my pelvic floor trouble with relaxation and maybe some acupuncture before pulling the trigger with the surgery. But if I can't bring myself to take the pill, that plan won't work. So now I'm just wondering if I should take my chances with the surgery or not.

Honestly, I don't know how to make this decision.

Wednesday, September 14, 2016

Whimsy Wednesday

I'm a huge fan of the character Ron Swanson from Parks and Recreation. Very funny. In honor of a long week of medical tests and doctor appointments I thought I would share this clip.

Have a great day!


Tuesday, September 6, 2016

The Worst of the Migraine Life

Sometimes the migraine pain is just too much. It can completely take over. There is no comfort, no escape, nothing to do but suffer and suffer and suffer. This level of suffering is scary and overwhelming. It makes me feel desperate. As hours turn into days, I start to feel like I'll lose it. I'm not even sure what that would look like but I have felt on the verge of it far more than I would like. It's just awful. All of it.

Thursday, September 1, 2016

Managing Through a Tough Summer - It Wasn't All Bad

I'm never sorry to see summer come to an end. It's not all bad but it's mostly bad. The heat, humidity, relentlessly long daylight, and the constant battle with the weeds - I'm just not a fan. Before we move into the wonders of fall and the holidays let's take a look back at the summer that was.

Summer favorites

While I've always liked the idea of having a cookie jar, I've never actually found one that I liked. That all changed in July when I happened upon this brightly colored gem at World Market. It has been a fun addition to the kitchen.



The other thing that caught my eye this summer was a show on Amazon called The Next Steps. At first I thought it was an Amazon original series but it also has air dates listed with each episode so it might have come from some other source. Anyway, you can stream it on Amazon Prime if you are a member. This show has two things going for it. One, each episode is only about 5 minutes in length. Two, these short vignettes of episodes take a comical look at dating. I didn't like all of the episodes but there were several that were very funny.



Summer Successes
I picked up a green pepper plant on a lark this past spring. To my delighted surprise some actually developed into usable food. I will do this again next year.



After years of being frustrated by the inconsistency of store bought bread, I took up bread making this summer. Obviously, kneading bread would trigger a fibro flare so I thought I would need a bread maker (did you catch the pun?). Then my mom pointed out that my Kitchenaid mixer would knead the bread for me and I figured, with the additional aid of my oven's proof setting, I could manage making it by hand. I gave it a try and the bread actually turned out fairly good.


A few simple ingredients and bam!! 4.5 hours later I had bread (I say sarcastically). It wasn't hard or anything, it just took a lot of fuss over a very long period of time. If I was going to cut the cord with store bread I was going to have to get a bread maker. Thankfully I had a birthday and received one as a gift from my mom.


I have not yet perfected my bread making but mostly because I hurt my feet and have not been able to do much standing. In the coming months I hope to change that.

Summer Failures
Well the biggest failure of this summer has certainly been the damage done to my feet. I spent most of the summer ignoring my sore feet until early August when my right foot became extremely painful. Now, with my metatarsals thoroughly inflamed, swollen and wrapped in pain, I've had to make some big changes in an effort to heal and then prevent future trouble. The doc says it might take a couple months or longer to heal but since I've seen no improvement in the first 3 weeks I'm beginning to think it may take longer.


Summer Highlights
For me, simply being able to watch so much gymnastics on T.V. was a real highlight. The only sports I like to watch are gymnastics and America Ninja Warrior. ANW is on every summer but gymnastics is very infrequent. This being an Olympic year I got to see the P&G championships, then Olympic trials and then the actual Olympics. What a treat!

The other highlight of this summer was the wildlife in our backyard. Despite hearing rumors of turkeys in the area, we hadn't actually seen one until this summer. This cute little guy spent a couple afternoons foraging for food out back.


We also saw this doe and her two fawns a few times over the summer. I could watch them all day.



Summer Lowlights
The lowlight of the summer has simply been having to cope with the added pain and complications of my sore back and the foot pain. All of this while I'm also still trying to figure things out with my endometriosis. I still feel a fair amount of doctor fatigue so all this extra time with doctors and tests is unpalatable but necessary. Struggling.

Wednesday, August 31, 2016

Whimsy Wednesday

While watching an old SNL rerun over the weekend I came across this wonderful skit of Mokiki. One of my all time favorite SNL moments.

Have a great day!