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Thursday, December 29, 2016

Good-bye 2016, Hello 2017

This has been an all-around tough year so I'm fairly glad to see it coming to an end. Like every year, I'm hopeful that the new year will be better than the last. While I certainly don't know what changes and surprises 2017 has in store, I do feel like hubby and I are setting ourselves up to make some purposeful changes in our life - and I'm excited about that.

I'm also feeling some anxiety and fear. I'm worried about the coming changes to the health care laws. I'm worried about the pain in my hands and feet. What if the medications don't help? What if I have to live the rest of my life with this increased pain? What if I am never able to return to any of my hobbies? How do I cope with this? 

I know 2017 is going to be full of challenges for me. I hope I will tackle these challenges with some courage and, ultimately, triumph over them. I could sure use a win.




Friday, December 23, 2016

Christmas Shopping with Migraines and Fibromyalgia

Christmas is almost here.

The onset of severe hand and foot pain this past August has made the holidays a real challenge. Even after abandoning the very thought of doing any holiday baking or bringing a dish to pass, I've still needed to do some shopping and some wrapping of gifts, which has aggravated both my hands and my feet.

Of course I did as much as I could online but online can't always take the place of shopping in a store. In a store you can look around and get ideas. You never know when you might stumble upon something wonderful that you never would have imagined. The item may be available online but you can't really do a search for something you don't know exists. Plus, it can be hard to get an idea of the quality of an item online. Pictures can be quite deceiving.

This year we found several gems in the stores and so I was glad we went shopping but, unless I get to feeling much better soon, I don't know that I can do this again. Every moment I'm on my feet I'm aggravating my foot pain and the more aggravated my feet get the worse the pain is even when I'm resting. Not to mention how difficult it then makes doing basic things around the house like laundry.

The wrapping was a big mistake. Everything I do with my hands aggravates the hand pain. Every. Single. Damn. Thing! I need my hands for showering, dressing, eating and drinking. The wrapping was an unnecessary aggravation. One that hubby will have to do from now on.

Going to the stores is always further complicated by the migraines. I can make a plan and rest my hands/feet all I want but if the day comes and I have a migraine none of that matters. No plan is ever safe, not even Christmas with the family.

Maybe the thing to do is make Christmas preparations a year long activity. We can keep our eye out for gifts all year long. Perhaps I can ask everyone to make an amazon wish list or just give only gift cards. Or maybe I'll actually find a way to control this new pain better. Obviously, that would be the best solution.

Christmas is the least of my problems if this pain persists.

Monday, December 19, 2016

Now on Medication Trial #3 for Nerve Pain

As expected the gabapentin made my nerve pain worse, so I'm off that. My doctor then prescribed Lyrica, which looks to me to be very similar to gabapentin. As expected, after 3 short days on Lyrica, I was having the increased nerve pain and trouble focusing my eyes.

Now that I'm done trying the two drugs I was fairly certain to have adverse reactions to, I'm ready to start trying to ones that have a better chance to being effective. I'm not sorry to have tried them again because I am just that desperate for some relief but I'm glad I didn't have to waste much time. 

The new trial is on nortiptyline, which is actually an antidepressant. This is one of the drugs I tried for migraine prevention along with amitriptyline and protriptyline. Obviously they have were not effective at preventing my migraines but I'm hopeful for some benefit with my nerve pain. Since it's very unlikely I'll have increased pain as a result of this medication, it'll be a while before I know if it's effective. 

I'll keep you posted.

Thursday, December 8, 2016

Christmas To-Do-List Complicated by Chronic Pain

Christmas is right around the corner and there is still so much to do between now and then, even after eliminating all baking and cleaning projects. Hubby and I have managed to make steady progress on our to-do-list but it has been slow steady progress. Frankly, at this rate it won't all get done in time. 

But it's not like we can just pick up the pace and get it all done. I can only go out on days when my head pain isn't too bad. Even on a day when the migraines are manageable, I can only run one errand if it's sunny out. With my foot pain as bad as it is (worse now because of the gabapentin) I have to limit the amount of time I spend on my feet. Doesn't matter if I'm walking or standing, every moment on my feet is painful and ever increasing until I'm off them. Then there is the need for recovery after.

While we try to get stuff done within the restrictive confines of my pain, Christmas gets closer and closer. Normally, I try to start on this stuff in the summer but this year has been difficult as I've been dealing with this new pain. Many things have been pushed to the back burner - Christmas shopping is just one of them. We won't even talk about the messy house and the complete lack of baking.

Chronic pain strikes again. Always present so I never forget it's the pain that dictates what I do and when, not me. No plan is safe, especially this time of the year.

Wednesday, December 7, 2016

WhimsyWednesday

A little levity to help you cope with the election and get you through this midweek.

Have a great day!!




Monday, December 5, 2016

Nerve Results and New Medications

How is it the 5th of December?

So much has happened already. 

I was able to get an appointment with a neurologist to see about the nerve pain in my hands and feet on the 1st. Much sooner than expected. Even more unexpected was being able to have the test done on my nerves that same day by the actual doctor. I thought for sure I would be sent to some testing center to have it done by a tech. Turns out there is no nerve damage, which is wonderful news. 

Since we have already ruled out other causes, most likely this is a severe worsening of my fibromyalgia. I've been asking myself over and over, what could I have done to make it so much worse? It has never been this severe and even with all the resting and care I've taken since early August, when all this started, I've not seen any real improvement. In fact it has only gotten worse. 

Since I can't come up with an answer, I have to assume this is simply something that can happen. Perhaps it's just a progression of the condition or some other idiopathic event. All I know is that this is not my fault.

The doc also prescribed a path to an appropriate dose of the gabapentin my primary doc started me on the week before. She was way, way, way under-dosing - she usually doesn't know what she's doing. As I started to increase my dosage over the weekend, my nerve pain got much worse. Last night's dosage made it clear that this just isn't the right drug for me. 

I had this same response to this drug back in 2011 when I was trying it as a migraine preventative. I've reached out to the doc to let him know what was going on. Hopefully, we can move quickly onto another medication trial. 

Wednesday, November 30, 2016

The Good in a Very Difficult Season

This fall has been rough. Extremely rough. I thought seriously about not writing about it at all because I've not been able to do much of anything outside of doctor appointments and sitting on the couch watching tv in pain. Hubby encouraged me to still do it so I thought I'd give it a try. I did find some good in this very difficult season.

Fall Favorites

I'm a big fan of Instagram. I love seeing pictures my friends post, but I've also been following a whole bunch of chihuahuas I've never met before. Oddly enough, I've become attached to these sweet little dogs. I see their pictures and videos every day along with fun captions filled with clues about their personality. Over time, I've begun to feel like I know these dogs. One of them has stood out, Little boogie shoes. This little chi has a movement disorder along with all kinds of charisma and charm. I have loved getting to know this chi. If you are on Instagram I would encourage you to check him out.

Fall Successes

My big accomplishment this fall is continuing to endure. I've been fighting through some very dark moments as I've been unable to do the meager handful of things my chronic pain had previously allowed me to do. By no means have I conquered the fear, anxiety, and deep sadness I've been wrestling with, but I still have had moments of pleasure. I've laughed with hubby and enjoyed some good shows. I'm even enjoying our Christmas decorations now, which I wasn't for more than a week.

I'm enduring and I'm hopeful that, with time, I'll find a way to deal with all of this much better. For now, that is a big accomplishment.


Fall Failures

The cortisone injections were a giant failure. Not only did it not help, it actually made my feet worse. At least I won't have to do that again.

We also had a small snake in our garage in September. We had accidentally left the garage open, only to discover the snake when we stepped out to walk the dog later.


Fall Highlights

Well, we couldn't let fall pass us by without enjoying some firepits.


The other highlight of this fall was the time I spent with our chihuahua, Gypsy. As always, she has been a loyal little friend and companion through this difficult time. She does dozens of cute things every single day. It is such a pleasure to have her in our life.





Fall Lowlights

This one is easy. The pain in my hands and my feet.

Whimsy Wednesday

This dog is so excited to skateboard.

Have a great day everyone!


Tuesday, November 29, 2016

It Might Be Time For a New Migraine Rescue Medication

I've always had a love/hate relationship with my migraine rescue medication - sumatriptan. I started on Imitrex back when my migraines were turning chronic (11 years ago) and then switched to the generic when that became available a number of years ago.

I love it because it helps to provide some relief from the terrible migraine pain. I can't imagine not having a medication to help me treat the pain. I honestly don't know how I would cope without the assistance of this medication. Literally.

I hate it because of the side effects. The Imitrex always made me feel sick to my stomach. So much so that I still don't like taking any generic that comes in that same triangle shape that the Imitrex came in. The negative conditioning is that strong. The generics still leave me feeling queasy but to a lesser degree. But that's not the only side effect. There is often a weird feeling in my heart. It makes my breath terrible. Sometimes, a couple hours after taking it, my blood sugar will drop and my breasts get tender.

Slowly. over the past year, I've been feeling like the medication is not as effective as it used to be. More often than not I need to add 400mg of ibuprofen to my sumatriptan to get relief. That used to be a trick I used only to treat the worst migraines. Plus, it's becoming more common for the rescue meds to either not provide as much relief or wear off quicker than it used to.

I think it might be time to look for a new rescue med, which will be tricky because:
1. My migraine doc is in Minnesota and I'm in Missouri.
2. Right now what little bit of energy I have is being spent on dealing with the pain in my hands and feet.
3. Trying new medications for my hands and feet might impact a trial of new medications for my head.

I've decided to put it off until the spring or summer in hopes that I can get a better handle on my hands/feet and be on a stable medication regimen. I just hope the sumatriptan won't become completely useless before then.


Friday, November 25, 2016

Getting Back on the Medication Roller Coaster

Well, I've officially gotten back on the medication roller coaster. I officially got off the migraine prevention medication roller coaster back in 2013 because I couldn't take dealing with all the side effects and never seeing any benefit. Well my reasons were a bit more complex than that but you can read the link if you want more information. 

I'm getting back on now because of the pain I'm having in my hands and feet. So far we've ruled out any kind of autoimmune, inflammatory or arthritis causes. Everyone feels confident that I'm having nerve pain. The only question now is this nerve pain due to nerve damage (neuropathy), or is this a severe increase in my fibromyalgia pain. 

The medications used to treat both conditions are the same and all of them are ones that I've tried before either for migraine prevention or fibro pains. I've had bad reactions to some of them and the others were ineffective. 

Still, I don't mind trying all of them again because severe pain in the hands and feet is quite disabling and very difficult to cope with. Plus, it's possible it will go better now. Just because they didn't work for migraine prevention, doesn't mean it won't work for nerve pain. The ones I did take for my fibro pain I didn't stay on because the side effects outweighed any benefit I was getting. But the pain is so much worse and more relenting now. 

I'm hopeful that I won't have the awful side effects I had before and that one of these medications will step up and provide some relief. 

I'm thankful that my primary care doc got me started on one while I wait for my neurology appointment. 

Yesterday I stepped on the nerve pain medication roller coaster feeling cautious and hopeful as I took the most daunting of all the medications - gabapentin. Last time I took it (migraine prevention) it gave me terrible nerve pain. 


Wednesday, November 23, 2016

Adjusting Holidays Plans Because of Pain

Holiday gathers are tough for me. The lights are always too bright. The din of all the simultaneous conversations is always too loud. There are usually at least a couple women who wear perfume. Between getting ready, driving and then trying to engage in small talk with everyone, it's taxing and exhausting. In a nutshell - migraine triggers are everywhere.

It's always nice to see family but there is no getting around how tough it is.

With the addition of terrible hand and foot pain this year, the holidays are even more daunting. I'm not able to do much of anything right now because the pain has gotten so bad. Additionally, I'm struggling to cope with these new pains. More and more, this is looking like it will be something I'm dealing with for the rest of my life. I might be able to manage the pain but it will be management not cure. The few things I could still do now worsen my hand and foot pain.

I'm just not in a good place right now and the last thing I want to do is put on a show and make small talk. I can't make a dish to pass. I can't do my hair. I can't put on make-up. The only shoes I can wear are my sneakers with the special inserts and those don't look good when dressing nice. I don't eat meat. I just want to be at home with my hubby and my animals.

This year we are going to have to do things a little differently. We have opted out of the big family gathering tomorrow but attended a smaller immediate family thing over the weekend. We will take the same approach to Christmas celebrations. And I've decided to not attend a bridal shower for my cousin in a couple weeks.

I don't want to miss the holidays completely but I'm just not up for anything big. The only good news is that I don't feel the least bit bad about doing what I need to do to take care of myself during this tough time.

Thursday, November 17, 2016

A Last Attempt To Obtain Relief

Well, after trying absolutely everything else to relieve the pain in my feet, I went ahead and did the thing I was scared to do. I got cortisone injections in both feet. 

Seems silly for someone who lives with chronic pain to be afraid of getting painful injections. But people were describing these injections as mind blowing, take-my-breath-away pain and I couldn't imagine doing that to myself. So I tried everything else my podiatrist had to offer first and since I wasn't making much progress I finally decided it was time. All this pain is getting to me. It has been so long since I took a step or stood up without pain. I figured I could endure the painful injections if it meant I had a chance at relief.

So Tuesday morning I went in and had it done. It wasn't terrible. It hurt but it wasn't as bad as I had been hearing. Then again, my experience might have been a little better because it didn't go deep into a joint but rather she spread it along the metatarsal area. The injection also included lidocaine so by the time I left my feet were numb, which was weird. I went right home and put my feet up and have carefully followed the doctor's instructions to rest and ice my feet. 

I was told that the pain would be worse for the first 48 hours (and it has been) but then it would start to feel better. It has now been 46.5 hours and I'm starting to worry. The pain from the cortisone has begun to wane but I have not yet experienced the original pain going with it. 

I need this to work. Have any of you had cortisone shots? What was your experience?

Monday, November 14, 2016

Making Further Adjustments to Manage Pain

On top of my usual chronic migraines, fibromyalgia  and endometriosis, I've been dealing with bad foot pain since August and even more recently with pain in both hands. My usually low level of activity and function has been forced to go even lower. I struggle to cook and clean. I struggle to shower. Well everything has become a struggle because everything involves using my hands and/or feet.

I don't yet know if this is going to be an ongoing problem that I'll have to deal with for the rest of my life, but I DO know that I will need to make some changes to how I do things either to manage these terrible symptoms or, if I'm lucky enough find a "cure" for whatever is happening, to prevent them from becoming a problem again. 

To that end I've been thinking a lot about how I can cut down on some of the work my hands and feet currently do. I'm going to get an automatic can opener. I'm going to stop making my own laundry detergent because it is hard on my hands and my feet. I'm going to have my husband help me put up and take down our holiday decorations. My mom sent me a pair of gloves with cushions to help pad my naturally bony hand. I'm going to type out labels instead of hand addressing my Christmas cards. You get the idea.

Additionally, I've been seriously considering giving up dairy. I tried going vegan about 7 years ago but after 3 months without dairy I started losing weight, which was a very bad thing. Normally, I wouldn't think of doing this again but I'm in a better place now with my weight and I think I might be able to do it without losing this time around. The benefit I seek is to reduce inflammation in my body. I don't know yet know what is wrong with my hands, but the problem with my foot is inflammation and this is not the only example of inflammatory problems in my body. 

I'm open to ideas if you have any.


Thursday, November 10, 2016

Some Post Election Thoughts


Well, I'm still in shock. All of my fears surrounding this election have come true. Nobody I voted for won - not at the local level, not at the state level and not at the national level. Additionally none of the state and local propositions and amendments went my way. That means Missouri will now have voter ID laws, which will make it much harder for any progressive thought or person to have a voice. 

We have elected some pretty disturbing characters to "represent" us. 

Most shocking of all, obviously, is the fact that Trump has won the presidency. I'm deeply disappointed in our nation. Trump might be an outsider and he certainly is going to shake things up but nothing he has presented indicates it will be for the better. The level of hatred and lack of maturity he has displayed over the years and during this campaign are frightening. 

As someone living with chronic conditions I watch as other states are able to adopt recreational use of marijuana while Missouri can't even agree to put extremely limited medical use up for a vote and I feel frustrated.I watch as the republicans talk about repealing the Affordable Care Act and I'm filled with fear about what that will mean for me and millions of others. 

I'm saddened by the big steps our country is taking away from equality, inclusiveness, unity and progress. 

I'm sad. I'm angry. I'm frustrated. I'm disappointed. I'm disgusted. I'm worried. I'm confused. I'm shocked. 

Tuesday, November 8, 2016

One Migraineurs Thoughts on this Election Day

Hubby and I got up a little early this morning and went right to our designated polling location. We stood in line for about 40 minutes, despite arriving about 5 minutes before it opened, before we were finally able to cast our votes. Immediately after I felt a wave of relief wash over me. I'm so glad to have gotten that over with. I'm even more glad that all campaign advertisements and election coverage will come to an end after today. 

Tonight, as polls begin to close and results begin to trickle in, my nerves will no doubt ramp up. The possibility of a Trump presidency is frightening to me for many reasons. One of those reasons is because he wants to completely repeal the Affordable Care Act (ACA) and replace it with Health Savings Accounts. Obviously the ACA has plenty of problems that need to be fixed but, as someone who isn't lucky enough to be completely healthy, I understand the importance of the protections offered by the ACA. Protections like, not charging women more than men, eliminating lifetime limits and not allowing providers to deny coverage for people with preexisting conditions. No HSA is going to protect us from these sorts of discriminatory practices. 
_________

Earlier this year, I wrote about how glad I am to live in a state that holds primary elections instead of a caucus. The idea is that for someone living with chronic pain (along with many other populations) a caucus is exclusionary and I happen to think that's wrong. To that same end, I wish all states would offer early voting any time there is a presidential election. Voting has hardly begun and already the news and social media is full of the images and stories of long lines. Heck, the man in line behind us this morning had to leave before he could vote. Who knows if he will come back and vote later.

Thankfully, it wasn't terribly cold this morning so waiting outside in line wasn't too bad. But what was bad was being on my feet on the concrete for 50 minutes, the bright lights in the school where we vote and the fact that I woke up with a mild migraine. By the time I was done, my head felt worse and my feet were quite sore. It would have been much worse if I had to stand in line after the sun came up, or if it had been colder, or if that line had been any longer (as I see many other lines are), or if my head was in worse shape. 

The unpredictable nature of living with chronic migraines, fibromyalgia and endometriosis coupled with the large turn out we see during presidential elections makes voting a challenge. I suppose I could attempt to get an absentee ballot during these elections but I am resistant to that idea because it seems like those votes only get counted if the margins are just so. The idea of that bothers me so I prefer to cast a vote, which is why I wish we had early voting. 

Early voting is great. Plenty of people besides those of us with unpredictable chronic health problems would love to vote early just as a convenience. Plus it would cut down on the crowds on election day. Even though Missouri doesn't currently participate in early voting, it does seem like the country is trending in that direction. I'm hopeful that one day soon, it will be an option for me.

Thursday, October 13, 2016

Understanding and Compassion from an Unexpected Place

I had a remarkable experience at the podiatrist office yesterday. Making it to the appointment was an ordeal as I was 5 days into a migraine. With the help of my rescue medication and the cloudy sky I was able to pull myself together enough to make the trip out to her office.

She recommended doing physical therapy for 4 weeks, which prompted a discussion about how frequently she wanted me going each week. I explained to her that I've had a migraine since Friday and how that is not unusual for me. I wanted her to understand how challenging it would be for me to go more than once a week for 4 weeks because my head is unpredictable and I can't treat more than 9 days a month.

She immediately understood. And I'm not just talking about keeping the PT frequency down to once a week, which she did do. She also lowered her voice and turned out the light in the exam room. A nurse walking by popped in to ask if I was okay, since I was sitting in the dark, and when she heard I had a migraine she brought me some water and quietly offered me an ice pack.

I was blown away by the understanding, the compassion and the kindness I was shown. I've never seen anything like it before at a doctor's office - and this wasn't even a neurologist or headache clinic. I was there for my foot pain. Remarkable!

Wednesday, October 12, 2016

Whimsy Wednesday - SNL

The only thing that keeps me from going crazy during this political season is the political satire.

Have a great day!


Wednesday, October 5, 2016

Whimsy Wednesday

At long last Saturday Night Live is back and not a moment too soon. The big debate sketch was so widely covered I decided to share this one instead. An unexpectedly funny bit that had nothing to do with politics.

Have a great day!


Tuesday, October 4, 2016

The Terrible Packaging for Rescue Medications

Has this ever happened to you? 

You wake up in the morning with a terrible migraine. You feel so awful; the light, the movement, the nausea, the excruciating pain! You stumble out of bed to retrieve your rescue medication. You get your hands on the press pack of pills and then you find yourself in a fight with with the packaging to actually get to the pill. A fight that you are in no shape to have.

Why are these pills so painfully hard to liberate from their packaging?

For many months Optum Rx was sending my rescue medication from NorthStarx


This long press pack would arrive and it was both difficult to separate the individual pill square and difficult to then open the square and retrieve the dose. In an effort to make things easier on myself I started separating the individual doses as soon as the box arrived. 


Then I learned that most of the time when peeling the back off, the paper would separate from the foil and then I could use my fingernail to break into the foil and get my pill. I started putting effort into making sure the paper was the only part to peel off and then leaving a dose on my bedside table and one on the table next to the couch. But, as you can see in the picture above, that didn't always work. Sometimes the foil would stick to the paper and the pill would be exposed.


This last time, Optum Rx sent my triptan from Dr. Reddy's. This is actually my favorite manufacturer of Sumatriptan, but that's a whole different post. You can see the individual pill square in the picture above actually has a scissor icon and a dotted line because the only way to get at these pills is to use scissors. 

This package was clearly not designed by someone who has ever had a migraine. As hard and frustrating as it has always been to get at these pills, it has never been harder and more frustrating than with these. Now, not only do I have to keep my pills nearby, but now I also have to have a pair of scissors with me?!?!? Are you kidding!! 

I like to keep my pills stashed in places I might need them - by the bed, by the couch, in my purse, in an emergency kit. But now I'm going to need to have scissors in all of these places too. Not cool.

I totally get that manufacturers want to keep the pills fresh. I want that too. The press packs being used for my dog's heart worm medication and flea/tick medication are never hard to get into. They separate from each other with no problem and they open with no problem. Why can't our rescue medications be as user friendly? It's hard enough to be suffering with a migraine without the additional hassle of accessing our medication.

Monday, October 3, 2016

20 Year High School Reunion

This past weekend was my 20th high school reunion. I didn't go.

 I didn't go for lots of reasons. First, I live a good 8 hours away from my hometown so going would have involved travel, a ton of planning and the expense of pet care. Second, my feet are still killing me so it's bad timing. Third, I'm in touch with everyone I want to be in touch with from high school. Fourth, my graduating class consisted of more than 600 students so my evening would likely consist of making small talk with people I never really knew. Fifth, I didn't feel like spending the evening explaining to people that I spent the last decade in terrible pain that robbed me of my career and most of my hobbies. Sixth, it would have been very loud and crowded, which would have overwhelmed me and triggered a migraine.

I love my hometown and I would love to spend an evening with a group of my old friends from high school, college and work but that wasn't what this was. Still, it got me thinking about old times. I can hardly believe I've been out of high school for more than 20 years now.

What's strange is how it can both feel like a lifetime ago and feel like time went by so fast. Perhaps the intensity of the teenage years leave a lasting impression on us, easily recalled and mistaken for the more familiar present. Perhaps this is why most intense times never feel that long ago, no matter how long ago it was. I also find it hard to believe it has been more than 10 years since my migraines went chronic.


Tuesday, September 27, 2016

Feeling Like Fall - At Last!

Fall weather is here! Fall weather is here! Three cheers for the long awaited relief from the intense heat and humidity of the summer!!!

I love everything about the fall; the colors, the cool temps, the countdown to the holidays, sweaters, hot tea, hot chocolate, soup/stew, baked goods and, best of all, fire pits. The whole of it is energizing and renewing. After months of hiding from the oppressive summer weather, I want to go outside and do stuff. 

Like everything else, it will depend on how I'm feeling. This year my foot pain is going to complicate all decisions about what we do, as even going to the grocery store can be difficult. At least my feet can't keep me from enjoying a fire pit and snuggling with hubby on the couch. Two things on the agenda for this weekend. 


One fall we rented a cabin in the mountains of West Virginia for a long weekend. I've been thinking it might be fun to do something like that again. Maybe next year for our 10 year anniversary. This was an ideal getaway for someone like me with a couple chronic pain conditions. It was quiet, we had our dog with us, the cabin had a kitchen so we got to eat our own food, we had a wonderful fireplace and we were surrounded by nature. We didn't have anywhere to be or any distractions from each other. 

There was certainly a downside. Mainly the remote location. We were literally the only people who had rented a cabin that weekend. Plus, the cabin didn't have a phone and the location was so remote there was no cell service. I didn't care during the day but it really bothered me at night. I wouldn't want to stay anywhere so remote again.


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!

Tuesday, August 30, 2016

Wondering if I Showed Symptoms of Fibromyalgia in Childhood

Remember back when you were in school and had gym class? The topic has come up several times over the past few years and each time it does I am reminded just how much I always hated gym class. Most recently, hubby and I were talking about it when the Olympics were on. We would catch some pole vaulting or hurdles or whatever and I would ask if he had ever tried it. He hadn't but the schools I went to had all that stuff and we were forced to do it all in class. 

I truly had a deep hatred for gym class and there were many reasons for it.
1.  I hated that everything was a competition. We were constantly competing to the fastest or strongest. Winning was all that mattered. The only thing I was the best at was being flexible. I was always super flexible. Unfortunately, that is not something valued in gym class. 
2.  I hated that we were never given much actual instruction or enough time to develop any real skills. Sure we got to try pole vaulting but we only had about a 1/2 hour to spend on it. We were told to run with the pole, secure it in the small slot and use that to jump over the bar. Sure, yes, but it's not actually that easy. We would then spent most of the time in line waiting for our turn to try it. We would maybe get to actually try it 2 or 3 times during that 1/2 hour. Unless you are just one of those people who were naturally good at everything (those people were annoying) that wasn't enough time to get the hang of doing something like that. 
3. The part I hated the most was that everything hurt. Hitting the ball with a bat hurt my hands, kicking the soccer ball or being kicked by people missing the soccer ball always hurt, catching the football hurt, running hurt my head and my side, crashing into to high bar hurt... Because everything hurt, I was always fearful and tentative in the way I approached every unit because I didn't want to be in a pain for the rest of the day. As you can imagine I was always picked last when teams were chosen. 

THE POINT
During a recent conversation with hubby about the various ways I had to suffer through I had an interesting thought. What if the pain I experienced was different from what the other kids were experiencing? After all, nobody thinks being kicked in the shin feels good but it didn't prevent anyone else from going full strength into a herd of flailing legs attempting to make contact with a ball. My legs would hurt for days after just one such encounter. 

Maybe this was an early symptom of a developing fibromyalgia. Maybe I always had fibromyalgia but it slowly progressed over my lifetime. It wasn't like I was adverse to physical activity as a child. Quite the opposite. I loved to play outside, go for hikes, jump around, dance. I was very active and energetic but gym class was a regular nightmare up through 10th grade when it stopped being mandatory.  

I wonder if any of you with fibromyalgia ever experienced something similar? 

Thursday, August 25, 2016

The Impact of my Foot Pain

Looks like the saga with my foot pain is going to be a much longer one than I had assumed. I finally went to the doctor last week. She indicated it would likely take a couple months to heal. She didn't have any real ideas for helping it along outside of icing it, which I was already doing. Fortunately, I'm a bit more creative than she is and I've implemented several strategies, both to help with the healing process and to prevent future troubles.

Healing Strategy
1. New shoes and slippers. I picked up a pair of Under Armour, gel padded slider sandals at Dick's Sporting goods. Great for wearing around the house and for short trips outside. I then had to order a pair of super soft padded house slippers because they won't be in local stores for several more weeks. And finally I ordered a pair of Speedo padded, waterproof, slider sandals/shower shoes for use in the shower.

Since my metatarsals are swollen, the theme for now is slide on,
open toed, padded footwear only 
2. Epsom salt foot baths. Hubby read online that it's great for inflammation and sore feet so I've been soaking my feet in a bucket of warm Epsom Salt water regularly. Much to my surprise, I honestly think there is a short term benefit to these soaks.


3. Anti-fatigue Mats. We found these great anti-fatigue mats at Costco for just $18. I've put one in front of the kitchen sink, one in front of the stove and one in front of my bathroom sink. That covers most of the standing I do. Since all of our flooring is hard surfaces it seemed important to pad my standing spots. I'm sure glad we did. My feet are still too hurt to make standing for more than 5 minutes difficult, but I'm really only able to do it now because we have these mats.


4. Padded exercise mat. A big part of my exercise regime has always been done on my old yoga mat, stretching, yoga poses and various leg lifts and bends. Since the yoga mat just sits on the hard floor I decided this needed to be replaced with a padded exercise mat. Although, I won't be doing any yoga poses or leg exercises until my feet feel much better.



Prevention Strategy
1. Throw away almost all of my shoes. While most of my shoes are actually nice shoes, they are all 4-22 years of age. Yikes! I do have one pair of boots that I've only had for 1 1/2 years so I'm going to keep those in hopes of putting some orthodics in them this winter.
2. Get new shoes. I bought a nice pair of tennis shoes but I'll need a pair of casual shoes to wear with jeans too. I'm not in a hurry. Two months is a long time.

3. Get new shoes every few years. I don't need many pairs because my life is pretty simple these days so regular replacement shouldn't be a big deal, though I'm certain it will feel strange to buy new shoes regularly.

How this impacts my Chronic Migraines and Fibromyalgia:
I'm trying hard not to feel defeated by this foot pain but it's been a real challenge. Paced activity is a crucial part of my chronic pain management strategy. However, the pain is pretty bad in my right foot and it gets seriously aggravated whenever I'm standing, walking or even sitting with my feet on the floor. Basically, unless I'm resting with my feet up or laying down I'm angering my feet.

In an attempt to avoid the terrible shooting pain that results from allowing my weight to transfer to the part of my right foot that has the most sensitivity, I've altered my gate, which is putting all kinds of new stress on the rest of my foot, ankles, legs and even my hips. I feel like every time I'm on my feet I'm not only making matters worse and delaying the healing process but I'm also triggering fibro flares.

I'm being so careful because I want my feet to heal as quickly as possible. I need this to heal ASAP. My house is a mess, I'm not able to do much cooking so we are not eating very healthy and I'm being driven a bit mad from boredom. None of this is good for my migraines. I HATE THIS!!!

Wednesday, August 24, 2016

Whimsy Wednesday

And finally the exciting conclusion of the Baby Bachelorette. These kids are so cute, I can hardly stand it!

Have a great day!!!


Wednesday, August 17, 2016

Whimsy Wednesday

And now for the dramatic hometown dates on the Baby Bachelorette!

Have a great day!!


Tuesday, August 16, 2016

A Lesson on How to Approach My Health From Watching Cesar Millan

I love watching Cesar Millan, The Dog Whisperer. I watch and rewatch his shows frequently, fascinated by the impact our energy has on dogs. Over the years I've tried many of his ideas on our dogs with varied degrees of success.

While watching a repeat episode last week, I had an ah-ha moment about my own health. That's right, the advice he was giving this couple about their dog inspired me to reframe my thinking and my approach to discussions about my medical problems.

Here's what happened.
This couple had a dog who was terrified of almost everything, inside and outside. When Cesar was talking to them they kept saying how they were just so worried about him on walks because his fear was so bad that he would freak out and pull super hard - what if he broke free and was hit by a car or ran away... They said it wasn't a problem inside because he wasn't in danger of hurting himself or anyone else when inside, despite equally intense fear of objects, noises, etc.

Cesar responded that it was all a problem that needed to be dealt with because it was all connected. He needed help with his fearfulness both inside and out. Just because he isn't in danger inside, doesn't mean he isn't unbalanced and in need of help inside.

This is a theme I've seen many times over the years and had even seen watching this same episode before. But this time, I connected to it and discovered a flaw in my own approach to my health.

Here's how it relates to me.
When I'm at the doctor's office, often I will speak about what I see as the biggest problem at the moment. I will come in focused on that issue and then downplay the other things that relate to it. Likewise, I've chosen not to go into the doctor for what I think is a "small issue", letting that issue become much much worse and much much harder to deal with because it wasn't dealt with early on.

This is not the right way to look at my health and it is definitely not the right way to present my situation to a doctor. They need all that information and I deserve to have all my medical issues dealt with.

A lesson which seems particularly relevant right now as I'm presently on day 6 of couch rest because I ignored foot pain I was having all summer until it became extremely bad pain that I couldn't take anymore. What's worse, this isn't the first time I've found myself in a situation like this. I must stop this pattern of only giving attention to the squeakiest wheels.

In my own defense, sometimes it can be difficult for a person (like me) living with multiple chronic pain conditions to know the difference between pain associated with one of these conditions and pain caused by something else. I've long feared that one day I'll have a cardiac event, small stroke or brain bleed and not recognize or get help because I'm used to crazy symptoms.

Not to mention, it can be difficult to decide to go to the doctor. My doctor's office is about a 20 minute drive one way. Between the crazy bright lights, the hassle of paperwork, the stress of fighting my pain and brain fog to converse with the nurse and then the doctor, followed by more driving, going to the doctor's office is taxing and always triggers more pain. PLUS, I've had so much trouble getting into a relationship with a doctor. I finally found someone I liked and a few months later she was gone. I would feel more comfortable going in for "small issues" if I felt like I was in a mutually respectful and trustful relationship with my doctor.

Maybe I need to adopt a policy of going to the doctor whenever I have anything new come up. That might help me avoid getting into trouble. No matter what, if new symptoms appear, just go in.



Thursday, August 11, 2016

Metatarsal Pain

I've known my entire adult life that foot problems were eventually going to become an issue for two main reasons. First, I have very high arches. Second, my feet are mainly skin and bone. What I didn't expect was that it would begin before I reached my 40s. 

Nevertheless, here I am. Laid up with terrible metatarsal pain. If I hadn't been so distracted with my low back pain, endometriosis complications, computer trouble and my usual migraine and fibro stuff I might have paid closer attention to the sore soles I've been dealing with most of the summer. Such is life. 

Everything kinda hinges on using my feet so this has become my top priority. I don't want to go to the doctor if I don't have to so I've decided to consult Dr. Google first. Seems like there is a lot I can do on my own - resting the foot, icing the area, ibuprofen, arch supports, orthopedic shoes and such. I can do that. 

I can deal with orthopedic shoes and inserts for the rest of my life. In fact, part of me actually thinks that sounds nice. Sure, another part of me will miss wearing flip flops but I mostly just loved wearing them because it allowed so much air flow around my foot during the sweltering summer months. These days, one can get a nice summer orthopedic sandal so I'm not too worried. 

The only thing that concerns me is what to do when I'm at home, which is the vast majority of my time. I never wear shoes at home. I hate having my feet confined in a shoe for long periods of time. I don't want shoes on my furniture nor do I want to have to take them off and put them on every time I sit down and stand up again. Whenever I'm at home I'm in a slipper but slippers don't provide arch support of lasting cushions. Making matters worse, almost all of our flooring is hard, either wood or linoleum, which the Mayo Clinic and WebMD agree is not good for this problem. 

I just don't want to become one of those people who wears shoes all the time. Now I should get back to my Google research. If you have any suggestions for great shoes or inserts, I would love to hear them.

Wednesday, August 10, 2016

Whimsy Wednesday - Babies acting like adults

Watching The Bachelor/Bachelorette is a guilty pleasure of mine. Before my computer died last month I posted an episode of Jimmy Kimmel's Baby Bachelorette. Here is the next episode in the series.

Babies acting like adults and poking fun at the show - so fun!

Have a great day!


Monday, August 8, 2016

The Trouble With Insurance Wellness Programs

I've noticed a trend in health insurance developing over the past several years - wellness programs. The insurer hubby and I use has one of these programs and they are constantly pestering me. I get phone calls and letters in the mail informing me that they can help me manage my condition better. All I have to do is call their nurses at such and such number. I've also been seeing more and more commercials for insurance providers who are touting their wellness programs as a selling point.

As wonderful as wellness sounds I can't help but have some mixed feelings about insurance company programs. So here are my thoughts:

On the up-side
Everyone benefits from preventative care and a focus on wellness instead of just illness. It's always cheaper and better to prevent problems instead of trying to treat or solve problems. That's true for everything, not just in matters of healthcare. There's even a saying - an ounce of prevention is worth more than a pound of cure.

A wellness program that can help educate people about eating well, exercising, cutting back on alcohol, quitting smoking and managing any conditions is a great idea in theory. Some people really do need help with education, follow through and encouragement.

On the down-side
A wellness program administered by a health insurance company doesn't likely have what it takes to make a real difference in wellness for 2 simple reasons. First, there is no physical location or in-person contact with the nurses who run these programs. Change is extremely hard, way too hard to manage with some random voice over the phone. Second, it's not realistic to think that these nurses can actually help. They don't have access to your medical or social history (thankfully!) and they don't have the medical training to really help with the wide range of complex medical conditions people are experiencing. For example, me. I know more about my conditions than both my PCP and my OB/GYN. I certainly know more than any nurse working for the insurance company.

I suspect these nurses are intended to help the insurance company save money by helping people manage common expensive conditions like diabetes, weight management, high blood pressure and the like. They certainly are not prepared for people like me, which doesn't stop them from trying to shove me into one of their programs to make themselves feel better.

In addition to the ineffective nature of insurance wellness programs, I have a difficult time trusting them with my private health information. In general I believe personal information needs to be carefully guarded and only given out on a need to know basis. The fear with insurance companies is that at some point in the future that information could be used against me. Right now laws might be in place about pre-existing conditions and such but republicans have continually tried to overturn this law since the moment it became a law. It's entirely possible that they might succeed some day.

Overall
I think wellness programs are a fantastic idea and I would love to see all people be able to access them as a right. Wellness ought to be valued and prioritized much more than it is today. It ought to start in preschool and be provided through high school - that will also require an overhaul of the school lunch programs, which consider pizza to be a vegetable. It should be available for adults in the community who need continued support. But it also needs to include access to food, quality medical care and mental health care. We need to eliminate food deserts and ensure that nobody goes hungry. We need to have a livable minimum wage and support for people who are unable to work.

Okay, I'm getting off topic here - my point is, insurance wellness programs feels to me like putting a bandaid on a severed limb. Plus, I'm pretty sick and tired of being harassed by them because I'm not participating.

Friday, August 5, 2016

Back online

I'm back online again folks! It took a little longer than I thought it might - I won't bore you with the ugly details but I'm relieved to have the whole thing behind me now.

I don't have enough time yet today to work on blogging but I should be back up and blogging regularly again within a couple days.

I've missed all of you and look forward to getting back on track.

Wednesday, July 20, 2016

A Short Absence

Just a quick update: my computer died on me or at least the battery did. I'm anticipating it may take 2 or 3 weeks to resolve this issue because I am also trying to sort things out with my back and finding a new endometriosis doctor. I won't be able to do much if any blogging until I get back up and running.

Just wanted to let you all know so there is no worry. I look forward to being back in touch soon.

Thursday, July 14, 2016

My Migraine Tell Revealed

After several years of living with chronic migraines, I discovered that I have a migraine tell. You know, something I do when the pain is ramping up or when I'm simply in bad shape. I tend to do it more when I'm also trying to hold it together for other people so they don't know just how bad I'm doing. You know how it is, you are out with people and suddenly you find yourself feeling worse and worse but you continue to smile and try to hold a basic conversation while implementing a graceful exit.

So here is my secret migraine tell: I run a finger, usually my middle finger, along an eyebrow.

I think the impulse to do this is stems from all the eye pain, pressure and photophobia I experience prior to and during a migraine attack. Plus, it might also be a subconscious way to sooth and acknowledge the pain I'm having despite the show I'm putting on for others.

I often question the wisdom of pretending, for anyone's sake, that I'm not suffering as much as I am. I do it because that's the impulse I have. I don't know what the right or wrong thing is to do, but this is what I do.

Do you have a migraine tell? I would love to hear about it.

Wednesday, July 13, 2016

Whimsy Wednesday

If you've ever shared your life with a dog you know how delightful and fun they can be. Here is a little sample of dogs being dogs for your pleasure.

Have a great day!!


Friday, July 8, 2016

Another Disappointing New Doctor Appointment

So I had an appointment with a potential new primary care doc last week. So here is how it went:

- I like the gal who works in the office, unfortunately it is just her and the doc in that office so they are very busy. However I did overhear that they are trying to hire a 2nd office person.

- It became obvious almost immediately that she didn't understand migraines, forcing me to field all manner of asinine questions, like "did you know there are lots of preventative medications available that you should try?" Gosh, what a thought, after 10 years that never occurred to me or a single other doctor I've ever seen to try a preventative. How about asking me what I've tried instead. That might be a more respectful approach.

- She then tried pushing Amitriptyline on me to prevent my migraines. I explained that I had tried it before and not only was it ineffective but it also caused a couple of troubling side effects. She said I should try it again because sometimes after a few years something that didn't work will suddenly become effective. I told her I wasn't interested. What I didn't say was that she was never going to be allowed to treat my migraines because she is not at all qualified. THEN, in the contest of talking about my fibromyalgia, she again suggested I try Amitriptlyline because it was effective for treating that. I again declined. She said I should think about it and I have. Trouble is, the more I think about it the more angry I get that she wasn't listening to me.

I'm trying to be understanding, after all she is a doctor and when someone like me presents with all kinds of medical issues the natural reaction is to try to treat the conditions. But all I wanted her to do was help me with my back and help look after the big picture. I just want her to be a PCP - leave the rest to the specialists and myself. BUT at the same time, she was making suggestions without asking any basic questions about what I've tried and where things stand. AND she clearly wasn't listening or being respectful about the things I was saying.

All of this has me longing for my old doc, my wonderful old doc of 3 months who totally got it and just wanted to be a great PCP for me. I deserve to have a great doc like that for more than 3 months.

Worst of all, I'm still in limbo with my back. She ordered an MRI and the office gal said I needed to call my insurance first to see where I can go. When I did that, I was also told that I needed to get a prior authorization so I would have to call the doc back and have them call the insurance company. So I did that, but I was forced to leave a message with the doc's office because the single office gal was busy when I called. That was Tuesday morning and I have not heard anything since. She may have gotten my message and started the 2 week long process of prior authorization or maybe this isn't a priority. Who knows. Maybe this isn't the right place for me.

Wednesday, July 6, 2016

Whimsy Wednesday - Bulldog Rolling Down a Hill

I just love this video of Juju the bulldog. Apparently he has discovered the joy of rolling down a hill. Can't help but remember doing it as a child.

Have a great day!!


Monday, July 4, 2016

3 Unpatriotic Things People do to Celebrate the 4th of July

The 4th of July is the day we set aside to celebrate our independence. No holiday is more patriotic, right? Sure - in theory. The trouble is, we tend to do some very unpatriotic things around the 4th, all in under in the name of patriotic celebration.
Here are 3 annoying and unpatriotic things people do to celebrate the 4th of July:

1. Using the flag as a pattern to be plastered on anything and everything. There are laws regulating how a flag is to be used and not used. This holiday is full of cheap plastic crap with our nation's flag adorning it - paper/plastic plates and cups, napkins, various clothing items or shoes, plus all manner of party decor items from banners to silly hats, noise makers and straws. Worst of all, you can find our flag pattern on firework packing to be blown up. These days we are very quick to throw that flag pattern on just about anything and call it patriotic fun. Almost all of it is illegal. Don't worry, nobody is paying attention.

2. The vast majority of these at-home fireworks are made in China. Yep, our national holiday of homegrown pride is big business for China. Why are we celebrating our nation's independence by going into our backyards and lighting our Chinese made dangerous explosives that we don't really have any training for or real control over? Even better, our yards, fields, sidewalks and streets then get littered with spent bottle rocket sticks and other such explosive remnants. Nothing says happy birthday nation like littering, right?

3. Perhaps the most unpatriotic thing we do this time of year is actually allowing at-home fireworks at all. Assholes all over the country spend hours drinking and celebrating with family/friends and then, when it starts to get dark, they start setting them off. So from around 9:00pm until about 2:00 or 3:00am (sometimes even later) entire neighborhoods sound like war zones - and this goes on for days. We are like many households across the country, who are negatively impacted by this. For us it's because we have a dog who, like many other pets, is terrified of the booms. But it's not just our beloved pets, but also other wild animals, people with dementia, babies and small children. Still not seeing how this disruption is unpatriotic - what about the war veterans and other victims of violence who are suffering with PTSD? What do you suppose we are putting them through? I firmly believe we don't have the right to torture one another and the animals of this country for our celebrations. Most cities put on a display so if fireworks are required for your holiday celebration then that is the only place it should be allowed.  

These at-home fireworks are actually illegal where we live but that doesn't stop anybody from doing them. They are still sold all over and used all over. We called the police on one house in our neighborhood about 1:30am today but most of the time we can't tell where it's coming from. I feel so helpless to protect our dog from the terror and hubby and myself from the long sleepless nights that accompany this holiday. This is not good for migraines.

Monday, June 27, 2016

#MHAM Theme Has Given Me a Boost of Inspiration



I've not been doing a great job of raising awareness this month. I do love the theme of Rule Your Headache Disorder - be actively engaged in your treatment. Yet I've struggled to come up with enough ways to talk about it. That might be due partly to the unusually high number of migraines I've had to contend with.

Even though I've said less on the topic and blogged much less than usual, I have been thinking a whole lot about how I might be able to take charge a little more in my own treatment. Over the past few days a plan has started to emerge around a confluence of recent events - I recently lost my primary care physician, I'm going to a D.O. for physical adjustments, I'm starting to get some pretty bothersome lower back pain and I'm still struggling to find the right medication to control my endometriosis without bothering my migraines.

ISSUE 1
The lower back pain is fairly new, like in the last 6 to 9 months. It started with some occasional sciatica and now (very recently) I have this constant discomfort in my lower back. I can't be certain what has caused this to suddenly become problematic. Perhaps it's just happening because of my age, perhaps because of all the pain postures I experiences, perhaps because of the adjustments I'm getting every month from the D.O. or maybe some magic combination of the three. Priority number one now needs to be finding a new PCP so I can figure out what is going on and get on top of this before things get worse. I also think I will have to insist that my D.O. stop doing one of the adjustments he does. The very last thing I need is another source of constant pain.

ISSUE 2
It's also time to start figuring out a new plan for my endometriosis. I think my migraines have been worse for the past month of so because of the latest hormone I've been taking. The good news about this latest treatment is that it seems to be helping the endometriosis but the bad news is that my migraines have been crazier than usual (and that's really saying something) and I've had terrible acne.

The real trouble here is a crisis of confidence in my OB/GYN. I like her a lot BUT since my endo has gotten out of hand over the last year some pretty big issues have come to light. It can be really hard to get a timely return call from her office. When trying to get a prescription for a new drug to try she accidentally prescribed me something with the exact same drug that I was clearly having a reaction to. I had an ultrasound done in her office but it took her 3 1/2 weeks to call me with the results. Then she told me I had polyps and proceed removing them but they turned out to just be chunks of endometrium sitting on my cervix - no surprise considering I was having some very heavy bleeding at the time. Seems to me, she should have checked to ensure it was attached before going in to remove it with a cutting tool.

Anyway, down the line I could need surgery and I'm just not sure I want my fragile body in her hands. Oh, but the very thought of trying to find a new GYN right now is overwhelming so I've decided to keep looking for medical solutions with the current doc but doing a great deal of research on my own about the drug options so we can choose what to try next with more care. Then when I figure things out with my back I'll start the search for someone new.

I guess if anything the theme this year has inspired me to reflect and then get moving on making these changes. After 10 years It's so easy to feel bogged down by doctor and drug fatigue or to get overwhelmed by the constant struggle to overcome the endless obstacles. I'm glad for the boost of inspiration.


Wednesday, June 22, 2016

Whimsy Wednesday

Okay, so I love watching the Bachelor and Bachelorette. What can I say, the show makes me laugh - so naturally I love it when people parody it. Jimmy Kimmel did a great job with this baby bachelorette.

Have a great day!!


Tuesday, June 21, 2016

Chronic Migraines Rule My Life


Rule Your Headache Disorder.

Sounds perfect. After all, I like to be in control. The trouble with chronic migraines is that even when I'm doing everything right, I never feel like I'm ruling over it. I work so hard to manage triggers, stick to my routine and keep my spirits up but migraines always find a way to show me who is the boss. Spoiler alert - it's not me.

Don't get me wrong, I've been able to bring my migraine frequency down from daily to an average of 18 per month with the help of a daily muscle relaxer. Plus, I've been able to increase my quality of life by practicing trigger management, pacing myself, doing regular gentle exercises and such. But that migraine is always waiting in the wings ready to jump out and take me down.

After a decade of fighting the good fight, I still don't feel like I rule over my chronic migraines. Quite the opposite, I actually feel like it rules my life. It shut down my career. It keeps me at home. It keeps me from being as active as I want to be. It keeps me from traveling. It demands I rest frequently. I can't plan to do more than a few things in a day, and never more than 1 thing if it involves leaving the house. I have to carefully tiptoe through life, trying not to anger the beast within. It has destroyed my recall. It has shaken my sense of self unrecognizable. It impacts my ability to socialize. My life revolves around my chronic migraines, fibromyalgia and endometriosis.

I hate it - everything about it.

I do what I can to strike a balance and live the best I can despite these unfortunate circumstances. Maybe one day in the future I will rule over my chronic migraines. Either way, I'll continue to fight for as much power over my conditions as I can get.

Tuesday, June 14, 2016

The Exhaustion of Being Actively Engaged

It's all so exhausting. All this being actively engaged in treating chronic migraines, not to mention the actual living with chronic pain. I don't know that people really understand just how exhausting chronic pain is, the toll it takes on us both physically and mentally. It's exhausting! Then you have to deal with the doctors, the appointments, the research, trying to explain things to family and friends, trying to manage all the things that you need and want to get done but never have enough energy to do, manging triggers...one never really escapes it. It's exhausting!

Sometimes I just wish I could take a vacation from it all. Maybe a month with no pain and none of the constant management of my conditions, no medications or special accommodations. Sounds greedy, doesn't it? A whole month of getting stuff done and having fun without paying a price or having it ruined by pain, brain fog, nausea... Gosh, that would be so wonderful.

Okay, but the reality is that constant vigilance and effort is required. I need to stay actively engaged in my treatment or I'll be in worse shape than I'm in now. Yikes!

I just wish it wasn't all so exhausting.


Monday, June 6, 2016

7 Ways I'm Actively Involved in Non-Medical Treatment #MHAM

Being actively involved in our treatment goes far beyond what happens in a hospital or clinic. Obviously we need our doctors to help us explore and access preventative and rescue medications. Plus we need them for supplemental treatments such as physical therapy, chiropractic care and mental health assistance for coping. As much as we need to be actively involved in our medical care, we also need to be actively involved in all the other aspects of our treatment.

The good news is, it's easier to be actively involved in treatments that don't involve medical professionals. Over the years, I've actually found the things I do (and don't do) beyond my medications are very important to my quality of life. When you live a life of chronic pain, you don't have the luxury of living carelessly because suddenly everything you do has a very real consequence.

Being actively involved in making lifestyle choices is a critical part of treating a disease like chronic migraines. For me that means things like:
1. Staying hydrated. Bringing a bottle of water along when running errands.
2. Trying to get the right amount of rest - too much is just as bad as too little.
3. Pacing my activities so I don't overdo it and make my pain worse.
4. Avoiding my big triggers (sun, loud noises, big crowds, etc).
5. Regular gentle exercises as inactivity can make matters worse.
6. Looking after my mental and emotional well being. Sometimes we need to just do something because it's fun and social, even if we know it will trigger a migraine. Life can't stop completely.
7. Like me, many people who live with chronic migraines are also living with other comorbid diseases or conditions, which can impact each other. I've found managing my fibromyalgia and endometriosis are just as important to managing my chronic migraines as staying hydrated or avoiding triggers.

Allowing any of these to get out of hand would result in increased pain and, when you are only allowed to treat 9 migraines out of 18 a month, containing the pain as much as possible is critical.

Treatment is about much more than being a patient.