Blinking and Migraines: Are They Related?

Hang on, this is actually a post about migraines. But first some background:

Hubby and I disagree on a fundamental level about the rules of a staring contest. He believes one wins a staring contest by going the longest without blinking or looking away. I believe one wins by staring into someone eyes the longest, not looking away or laughing. Essentially, the difference is he thinks it's a physical task and I think it's a psychological one. People tend to get uncomfortable staring into someone's eyes for extended periods of time, which is what makes it a challenge that anyone can potentially win - if you agree with my rules.

Anyway

We recently were discussing this topic, which got me thinking about why his rules make it impossible for me to win. I can't go long without blinking, which got me wondering how often does the average person blink. I Googled it, of course, and read several articles on the topic. What I learned is that people generally blink 15-20 times per minute. Apparently, this is more than what is necessary for us to keep our eyes lubricated. The thinking is that blinks actually provide a super quick mental rest for our brains and when we are focused on a task or otherwise using our brains we blink less frequently compared to when we are just relaxing. 

So I started paying attention to my own blinking and learned exactly what I expected to learn - I blink way more than 15-20 times per minute. Perhaps this is why I frequently have my eyes closed or (worse) half closed in pics. I've ruined many a group picture with my drunk looking eyes. 

I suspect I do this because of my chronic migraines. I am incredibly sensitive to light. It is one of my most reliable triggers and one of the strongest symptoms I experience during a migraine. Even back in the day, when my migraines were episodic, I was much more comfortable in low light. Seems logical that my extreme light sensitivity would cause me to be an excessive blinker.

I also noticed a correlation between the amount of fatigue I'm feeling and frequency of my blinking. The worse my fatigue, the more frequent my blinking. Perhaps when we are especially fatigued we need more of these super quick mental breaks that blinking provides. Seems logical.

I wonder if any of you migraineurs out there blink more than 15-20 times per minute too? 

Something tells me there won't be a whole lot of research done on the relationship between migraine symptoms and blinking but I'm curious what you guys experience. 

Highs and Lows of an Eventful Spring

With temperatures warming in February this year, I was worried that spring was going to be warmer too. While we've certainly had some hot spells, we've also enjoyed some nice moderate to cool days. Before the dreaded heat and humidity settles in for the long summer ahead I wanted to take a moment and look back at the spring that was.

Spring Favorites

As usual, I spent a good amount of time resting and/or distracting myself from my various pains with Netflix. In April I started streaming a show called Life Below Zero. I would call it a docuseries. Sort of a hybrid of a reality show and a documentary. It follows the lives of 5 people living a subsistence life in remote areas of Alaska.

I fascinated by the way these people live. Their lives are so remote and harsh, so different from the way most people in the U.S. live. Netflix is now streaming 4 seasons of this compelling series. If you are thinking about checking it out just be aware that occasionally they mount a camera to an ax or shovel and show dizzying footage from the perspective of the tool. It doesn't happen a lot but it does happen. I have to look away because it increases my nausea and can make me feel dizzy.


Spring Success

It took some doing and I wasn't sure it was going to happen but I managed to paint our mailbox and the iron stand it sits on. Despite only being 3 1/2 years old the black paint on the iron stand was already beginning to rust in places and the paint on the metal box had faded a fair amount. I figured a good 2 or 3 coats of a rust prevention Rust-oleum paint would take care of the problem and cost only a few dollars. A much better option than letting it rust, look terrible and then needing to replace it.

I found a nice gray color that matched the gray siding on our house well and then waited. The waiting was the tricky part. I had to wait for the perfect combination of mild temperatures, very low winds, cloudy, dry, day when I had very low pain. Thankfully this perfect day arrived and I was able to do this project. It didn't take long at all and it made a huge impact.

The other success of the spring season was the planting we've been able to do. After I developed all this pain in my hands and feet late last summer I was forced to abandon my garden entirely. It didn't take long for everything to die. I honestly wasn't sure if I would be able to do any sort of planting this year but I decided to give it a try when I found a medication that helped to reset most of my hand pain overnight.

I started slowly by planting some snow pea seeds. I honestly didn't imagine it would actually grow but it has far exceeded all of my expectations.

As of today it is 3 times bigger than any pea plant I've tried growing from the store in previous years. Best of all it required absolutely nothing from me. All I did was put several seeds in this small garden bed and then put a couple trelllises in when they poked through the dirt. We've had plenty of rain this spring so I've really not had to anything to it. Today it is about 9 inches taller than the trellis and producing snow peas. Tomorrow I will pick a few and make a stir fry with them for dinner.

I also planted a few pepper plants - green, yellow and jalapeno. They have also grown much larger than any other year. The peppers have just begun to bud. My fingers are crossed that I will have fresh peppers and fresh snow peas ready at the same time so I can enjoy both in a fresh stir fry in the weeks ahead.

You can see how the peppers quickly dwarfed the marigolds I planted with them. The marigolds are great for keeping bad pests away from the veggie plants. Just like with the snow peas, these peppers have been super low maintenance. I have watered them a few times but otherwise have not needed to do a thing.

My rose bushes are also having an especially good year. I cut them back a bit early in the spring because they had gotten too big and were touching the siding of the house. Apparently, this trimming made them very happy because they just exploded with new growth and produced more roses than any previous year.

I've had such a wonderful time watching my plants grow this spring. I'm so glad that I decided to go ahead and put some some effort into the garden. With minimal effort, padded garden gloves and pacing, I've gained so much pleasure and soon some garden fresh veggies.

Spring Failure

As the temperatures have warmed, the pain in my feet has gotten worse. I'm beginning to wonder if the increased warmth and humidity is responsible for the extra pain. My feet have always had a tendency to overheat in the summer. I'm one of those people who can't wear closed shoes and socks in the summer because my feet will quickly swell and become overwhelmingly hot. I will have to find a few pairs of sandals for the summer because I can't continue to wear my sneakers.

Spring Highlights

Spring evenings are the best because the temps are perfect for firepits. You know how I love my firepits.

We light the tiki torches and settle in to watch the fire burn as the sky gets darker and darker. It's so relaxing and enjoyable. We will try to get one more firepit in this weekend but there certainly aren't many cool evening left before summer temps force us to stop.

The other highlight of this spring was getting to see a bunch of family at my cousin's wedding. While I certainly didn't get to spend much time with them because I was in a lot of pain, I still really loved seeing them.

Spring Lowlights

Gypsy has been battling a nasty infection most of the spring. We had to change her food, which has been a bit of an odyssey itself, and we've been vigilant in an attempt to knock it out completely but it has been a long process.

Look at that cute little face!

We hope to get a clean bill of health in the next few weeks. She's such a sweet and loyal little companion, it's always hard to watch her struggle.

There is something so refreshing about spring. Somewhere between the greening vegetation, the flowers and the warming temps the world almost feels like it's resetting. I do love it.

Am I Brave Enough?

As June quickly approaches, I've been spending a fair amount of time thinking about this year's migraine awareness month. Each year I try to spend the month participating in some kind of awareness raising activities. I've done the blogging challenges and shared facts on social media. I've been trying to think of something different to do this year, just to change things up. 

The theme this year is, The Art of Migraine and Headache Management. The only idea I've come up with is to spend the entire month documenting the raw ugliness and everyday realities of living with chronic migraines on my personal Instagram account. 

This is a big deal for me for a couple of reasons. First, I don't really share the details of my struggle with many people in my life because I don't want to bring folks down and I want them to treat me as normal as possible when I actually feel well enough to go out and socialize. Second, I don't share much about my life with chronic migraines on my personal social media because I fear this information could some day be used as a reason for potential employers or insurance companies to discriminate against me. 

Everyone I know, knows that I have frequent migraines. Some people know that I have chronic migraines and also understands what that means. A handful of people know just how much it effects my life. Any lack of understanding on the part of my family and friends is mostly due to the amount of pretending I do, both in person and on social media.

When people ask the obligatory - "how are you?", I smile, gloss over the ugliness of the truth and change the subject. I respond honestly when people truly ask about how things are going or how I'm feeling. But I almost always follow it up with a positive platitude in an attempt to make us both feel more comfortable and to move the conversation in a different direction. Basically, if I'm out socializing with folks, I'm putting on a show. Because my chronic migraines (and other conditions) are invisible illnesses, people tend to believe what they see in me - the show I put on for them. 

I can usually put on a show for a short period of time. But what few people see is the preparations that went into the show, the struggle to get through it and crippling aftermath. Even the handful of people who get glimpses into the reality of the show never truly get to see the mental and emotional toll it takes. That's a personal hell that people can't know unless they have experienced it. 

I've been feeling increasingly brave about sharing more with my friends and family. In the past few months I've shared pictures of myself during a migraine on my personal Instagram account. It is this impulse to share some of these moments that inspired me to want to spend this migraine awareness month sharing the big, ugly, real picture of living with chronic migraines with them. 

Then I saw a statistic last week about the huge percentage of applicants who have been taken out of consideration for jobs because of what is on their social media and I got cold feet. That's my big fear - being discriminated against because of my chronic migraines. The reality is that, I've been out of work for so long because of my health that I would need to explain my employment gap to any potential employer. 

But

This fear is very real and runs deep inside me. And what's worse, it is unreasonable to think that this information could be used against me in the future. 

I want to reject this fear. I want to be brave and live more fully in my truth. I want to stop pretending out of fear. I want to live more authentically and not just as my alter ego - Migrainista. Am I brave enough? I think so. I'll keep you posted.

The Relationship Between Muscle Tension and Migraines

This has been a rough week so far. I've been battling a terrible migraine and now the muscle spasm in my neck, shoulders and upper back is redeveloping. In an effort to get on top of this spasm before it gets out of hand, I've started using the Thermacare Heat Wrap and am working hard to keep the area relaxed. 

Relaxing these muscles is a huge undertaking as they tense up in response to the migraine. The worse the pain the more of my upper body becomes tense and the harder it is to relax them. This tension seems to then make the pain worse, which makes the tension worse. 

I don't entirely understand the relationship between my muscle tension and my migraines but there is no doubt one exists. 

The first neurologist I saw for my migraines told me I had a lot of tension in these muscles. At the time, my migraines were constant - 27/7 migraine. He seemed certain that this tension was retriggering my migraines. Before one would resolve, another one would be triggered causing the constant migraine. He put me on the daily Baclofen (muscle relaxer), which has brought the frequency down to an average of 18 per month. I honestly think I would have lost my mind years ago if not for the Baclofen.

The migraine specialist I was seeing at Mayo insisted Baclofen is not a migraine drug, which is what prompted him to send me to physical medicine. It was this referral which lead to me getting the diagnosis of Fibromyalgia. As much as I was relieved to finally have some answers about the other non-migraine symptoms I was having, I was also frustrated that nobody seemed to be looking at the big picture. The truth is that before the Baclofen, I constantly had a migraine. The two ARE RELATED. 

The compartmentalization that can occur within these specialties can make it difficult to sort through any sort of relationship between symptoms or conditions. I'm feeling trapped in this crack in the system, unsure where to turn to get help; but in need of help as my muscle tension is becoming a bigger problem. Interestingly enough, I'm also seeing an increase in the severity of my migraines. 

Repeal and Replace Panic

Are any of you as worried as I am about this repeal and replace business? I was so relieved when the bill was pulled last time and Trump was pitching a fit, saying we are stuck with what we have for the foreseeable future. But here we are, several weeks later, and the house is getting ready to vote. I guess he can't see more than a week or two into the future at any given time.

Then I see something like this and my worry turns to a feeling of panic.



This man is a lawmakers!?!?!?!

The stakes are high and I'm troubled that none of the discussion are about what will bring down costs and provide better coverage. Instead all we hear is about the politics of it. How important it is to repeal and replace because that's what they were elected to do. How important it is to keep some popular parts of the ACA because constituents demand it.

Nobody has read the current bill, we have not had an opportunity to review and discuss it, we don't know what it will cost and what the effects will be. But it's in the republicans best political interest to say they repealed and replaced Obamacare even if millions of people lose coverage, costs go up and people with preexisting conditions get priced out. They don't care at all.

As far as I'm concerned both parties are guilty of not being honest about what it will take to provide affordable health care to everyone because the special interest have unfairly branded the notion of a single payer system in a way that makes it seem dangerous and anti-American.

The instability and the constant effort to take away what little bit of progress we have made in the healthcare arena is hard to cope with. The USA stands alone in making health care a privilege instead of a right. We spend more and are sicker than any other industrialized country. What will it take to turn the tide?

Another Doctor, Another Dehumanizing Experience

Well I tried a new primary care doctor yesterday and it didn't go well. Yet another dehumanizing experience. This doc wanted me to justify why I was taking the medications I take. I don't mind explaining who prescribed my medications, how it came about, what the medication does for me and how long I've been on them. I'm not on any opiates. All of the medications I'm currently on have a direct benefit to my quality of life. The dosage was dictated to me by specialists and I'm just looking to maintain the status quo. I have nothing to be ashamed of and nothing to hide so discussing them with a new doc is no problem.

But I took offense to her response to all of my medications. She told me that I'm not using any of my medications as they are designed. She said it is all outside of her comfort zone because she is an internist (the website had her listed as a family doc so I was surprised to learn that was incorrect) and when people are presenting with conditions that require that kind of care she likes to defer to specialists. 

I explained that all of these meds were originally prescribed by specialists and that I'm just looking to follow their plan and maintain the current level of benefit. She told me that she wants me to go back to see all the specialists so that she can develop a relationship with them and they can coordinate my care. I do actually want to see a migraine specialist again to tweak my rescue meds and begin a relationship so that when this new preventative hits the market in a few years I can give it a try. But there is zero benefit to going back to these other specialists because I'm currently on a treatment plan that works. The rest is up to me. 

She seriously wants me to spend hundreds of dollars and waste precious time and energy going to specialists so SHE can feel comfortable with my medications. If I go to all of them every year then I don't need her at all. They can just provide the prescriptions. But that not how this is supposed to work. If I don't need ongoing care I don't need the specialists anymore. I should be able to continue my care with my primary care doctor. 

Another thing she did that bothered me is that she asked me if I had filled out a record release form. I answered. Then a couple minutes later she asked again. I answered. Then she asked again. I answered. She continued to ask me this same questions over and over throughout our appointment. She clearly wasn't paying attention, which makes me wonder what else didn't she hear me say. Then I wonder what she put in my chart. Was that correct? Did she give me some negative label that will follow me any time I see a doc in that system?

Clearly, this is not the doctor for me. I'm trying to simplify my medical care not complicate it and spend more money on it. I just want to cry. I feel so defeated by the continued failure to find a good primary care doctor. What I wouldn't give to be rid of them entirely. I wish I didn't need medications or doctors. I wish I could just have a yearly exam and go on about my business. I wish there weren't so many shitty doctors. I wish the good ones weren't so hard to find. I wish we could have more say in our treatment. I wish there was a way to interview a doctor or otherwise determine if they would be a good fit prior to making an appointment. 

A New Approach to Botox

My recent trip to urgent care for my muscle spasm yielded a very interesting conversation with a fellow migraineur. The doctor who was working at the time happened to be a D.O. who used to have frequent migraines. A quick look at my history revealed my status as a chronic migraineur and so she wanted to tell me about how Botox significantly reduced her migraines.

I explained that I had tried it before and it hadn't been effective. Honestly, I just wasn't interested in having a conversation about it. I was there for my spasm and the matter is quite complicated. But since she's a doctor I heard her out and I'm glad that I did. 

Apparently she had gone to a plastic surgeon long before Botox was being used for migraines and asked to get injections in her specific trigger points. She had discovered on her own that she was able to stop a migraine if she caught it early with an injection of lidocaine into the painful spot where it seemed to manifest from. This gave her the idea to seek out Botox injections in those points for a more long term solution. And it worked.

So instead of getting a prescribed number of injections in prescribed locations she only gets them in her specific trigger points. She emphasized that it has to be given in the exact right spot and she says that as the patient you really know when the doctor is in the right spot because it's pretty painful. She has been doing this regularly for many years and has had continued and consistent positive results.

I am fascinated by this notion. Doctors have been attacking trigger points with various methods as treatment for many years. There are nerve blocks, nerve decompression, topical ointments, acupuncture, acupressure, nerve stimulators, etc. Even traditional Botox as treatment for migraines is centers around these areas. I've heard so many stories from people who have tried Botox with such varied results. Sometimes it works for a while and then stops, or responds differently to each new round and I have to wonder what makes up that difference. I would think the same person, getting the same injections, from the same doctor should get consistent results.

This conversation got me wondering if the difference is that sometimes those injections are better placed than other times. If the doctor is injecting into a prescribed area that isn't relevant to your migraines perhaps it has no chance to work. If the doctor sometimes happens upon the right point that might produce better results. If a precise location is really that important, that could partly explain why experiences can be so varied despite other consistent variables. 

This method has been very effective for this doctor, which certainly doesn't mean it will work for me or you but I think it's worth exploring.

I still have questions. I don't know if my insurance will cover an office visit with this plastic surgeon or if they will cover Botox injections done by him in an unconventional manner. I don't know what it would cost if they don't. I would like to talk with a migraine specialist about this. And I'm super curious what you guys think of it. What do you think?

It Shouldn't be this Hard

So I never heard back from my primary care doc. I called her on Monday (day 5 of this muscle spasm) and asked if she might be able to spend in a script to help me because I wasn't able to drive. She didn't bother getting back to me so on Tuesday morning hubby had to go into work late so he could take me to urgent care.

I called the doctor in pain and with almost no range of motion in my head/neck area. She couldn't even bother calling me back. I wouldn't have minded at all if she wasn't comfortable sending in a prescription without seeing me. That is a perfectly acceptable response. But no response! No response is unacceptable!

I got what I needed from the urgent care doctor but she wanted me to follow up with my PCP if I don't feel better in a few days. Two days later and I'm not sure that my muscles are actually letting go. Between the muscle relaxers and Thermacare heat wraps I'm doing okay during the day but overnight the meds wear off and I'm in rough shape by morning. The very last thing I ever want to do is go back to that damn PCP.

The doc and her office staff have proved to be completely useless at every turn. But the way they have handled this situation makes me so angry. Today I received an email from Optum Rx informing me that my order is in the mail. I didn't call for a refill nor did I see or talk to my doctor so I have no idea what is on it's way. When I called Optum to find out I learned that my PCP went ahead and sent in a prescription for a muscle relaxer.

She didn't bother to call me. She didn't bother to use her brain. Common sense should have told her that it would take at least a week for me to receive the muscle relaxer from Optum Rx because they would need time to process and then send it in the mail. I obviously needed this right away so she should have sent it to the local pharmacy I have listed in my chart. AND I SHOULD HAVE BEEN INFORMED OF WHAT WAS HAPPENING!!

I'm so sick of being treated like I am not a part of this. I'm sick of all the mistakes! I'm sick of constantly trying to fix their fuck ups! I'm sick of not being able to talk directly with my doctor unless I come in and pay! I'm sick of not being treated with common decency and respect! I'm so sick of this broken system!

I wish I didn't need all these idiots who stands between me and access to the medications I need. Why are so many of them idiots?!?!?!? Why is it so hard to find a competent doctor with competent staff? It shouldn't be this hard.

Muscle Spasm, Migraines and Fibromyalgia

I'm now 5 days into a fairly severe muscle spasm. My neck and upper back started to spasm this past Thursday. Despite resting it, using the heating pad and taking my usual daily dose of muscle relaxant, the pain and stiffness has only gotten worse.

Muscle spasms are a regular part of my life. They have been for a very long time. What's unusual and noteworthy about this one is that it isn't resolving and it covers a fairly large area. I had one like this right around the time my migraines were starting to increase in frequency.

A little more than a year later my migraines were daily (constant). About 6 months after that, the neurologist I was being treated by in North Carolina put me on a daily dose of bachlofen (muscle relaxer). The idea being that if I could calm down the muscle tension in my neck/shoulders/upper back area that would prevent my muscle tension from retriggering another migraine before it has a chance to resolve.

Obviously this isn't a migraine treatment but it absolutely did reduce my daily migraine down to an average of 18 per month.
Perhaps it was actually treating a component of my fibromyalgia (I didn't even know I had at the time) and by doing so it helped with my migraines. Either way, I've taken 30mg of bachlofen every night for the last 10 years. Now I'm beginning to wonder if my body has grown so accustomed to it that it no longer is as effective as it used to be.

When I look at the big picture of my migraines and fibromyalgia I can't help but notice there are several components out of whack. Perhaps it's time to seek out a local migraine specialist. I would prefer to continue to see my specialist at the Mayo Clinic but considering I'm facing a number of questions I think it would be better if I could find someone local. Wouldn't hurt to give it a try.

Meanwhile, I have my fingers crossed that my PCP will call in a prescription to help me get on top of this present spasm. The range of motion in my neck is so bad that driving is not an option.

Lesson: Migraines and Wedding Receptions Don't Mix

Still in full wedding weekend recovery mode, I thought I would take a moment to talk about the important lesson I learned from this event. The very nature of a wedding reception is intolerable for my migraine prone self. I've decided that this was my last wedding reception.

I went into the weekend feeling as prepared as I could have been. With all the family coming into town there were gatherings being planned Thursday, Friday, Saturday and Sunday. I had made up my mind that I would attend the Saturday and Sunday events, knowing that 4 days of activity was just not going to be possible. That included the wedding, the reception and a small, informal gathering on Sunday afternoon with family who was still in town. 

The wedding went well and after we had some down time to return home to eat, rest and feed our animals before the reception. The rest did me good and the pain medication I took during that time allowed me to pull myself together again and head out to the reception. The reception hall was beautiful and the temperature was perfect. The meal was hot and quite tasty. But the noise, oh my word! The din of the 300+ guests was overwhelming, add in the live band, who played throughout dinner and then got louder for dancing after, and it was just too much. There was no way to mitigate that. 

I was in rough shape after all that and by Sunday I was in even worse shape as my body was still dealing with the fallout. I ended up having to take even more medication that morning to be able to attend the casual Sunday gathering. I knew then that wedding receptions were just something I shouldn't be doing. The price is too great. 

Looking back, I probably should have planned to attend the Friday evening event and the Wedding on Saturday, with the option to attend the casual Sunday thing only if I was up to it. That would have allowed me the opportunity to talk with more family and I could have done it without putting my body through the extreme stress of the reception environment. I can't really do any amount of dancing with my feet pain, I can't really have much conversation in that loud environment and the late night nature of the reception pulls me out of my routine in a pretty significant way. There is almost no benefit and a whole list of detriments.

Healthy, young me always loved wedding receptions. I loved loud music, I loved dancing and all the merriment that surrounds it. I wish I could go, have a great meal, a nice glass of wine and then spend the evening dancing with my husband and laughing it up with all my family. I wish it wasn't all so very painful. I wish I could just have a small vacation from my pain long enough to do something normal like attend a wedding. BUT I can't. This is my truth. It's hard to accept but that is exactly what I need to do. 

Preparing for a Big Weekend

A cousin of mine is getting married this weekend. Thankfully, it's a local wedding so we are able to attend. Still, there is much to do to prepare for the festivities and to prepare for house guests. I tried to do as much as I could in advance so that I could spend a fair amount of time just resting this week but much of what needs to be done, needs doing closer to their arrival.

I always enjoy seeing my extended family and I do love weddings. I would love to spend the weekend soaking in as much family and fun as possible. I wish I could press pause on my migraines and fibromyalgia so I could talk, dance, drink, eat and laugh all weekend. Unfortunately, chronic pain doesn't work like that.

I attended another cousin's wedding almost exactly one year ago and learned some important lessons that I hope will help me better navigate this year's event. 

Lesson 1: Bring sweaters. Last year I was so cold through the entire reception, which caused my muscles to become tense, which caused a tidal wave of pains, including a migraine. If I'm cold for more than a few minutes the result is pain 100% of the time. By the time we got through all the various courses of the meal I had been extremely cold for about 3 hours and we had to leave a short time after. This year I'm going to bring a long, thick sweater with me in case the reception hall is cold. I don't even care that I don't have one that matches my dress, I just can't deal with another dinner like that.

Lesson 2: Bring ear plugs. I don't know why I didn't think about this last year but boy did I rue the night. The reception hall was huge and we were up front, right by a giant bay of speakers. It was bad when they made announcements but it was horrible when the music started. Much too loud for this migraineur. This year I will be better prepared with ear plugs. 

Lesson 3: Eat before the reception. Hubby and I are vegetarians so we signed up for the vegetarian option on the RSPV. Last year the RSVP included a description of what the vegetarian meal was and it sounded wonderful. Unfortunately, between the super cold reception hall and the cold plates the meal was served on, our wonderful pasta dinner was cold by the time it reached us. We didn't eat much and I was pretty hungry when we went to bed. Yet another pathway to pain. This year we don't even know what the veg. dish will be so we are going to eat before to ensure we get to eat something good. 

Further preparations include:

- Bringing my own water bottle of room temp water so I don't have to deal with cold, iced water.

- Because of my foot pain, I had to search out a pair of flat, comfortable shoes. I wasn't able to find anything I would classify as formal that fit the comfortable requirement but I found something close enough. Comfortable was the #1 priority. I'm not about to spend the next 3 months recovering from a formal pair of shoes. Nobody I care about will judge me.

- Resting as much as I can in the days and hours leading up to the weekend.

Being so prepared, I'm left with space to just be excited. I'm excited to have my mom and sister staying with us. I'm excited to see a bunch of extended family. I'm excited to get dressed up and attend this wedding. I just hope my pain isn't too intrusive this weekend so I can have more fun than I was able to have last year. 

How Is It Only Wednesday?

This has been a tough week so far. I'm still struggling to adjust to the cruel and ridiculous time change. It blows my mind that we have collectively decided to just go along with this madness year after year. Surely we can come together and pass a law abolishing it altogether. Boom problem fixed. sigh

Anyway, during this adjustment our sweet little chihuahua, Gypsy, developed another UTI. She is prone to getting them from time to time and just for fun she got a very severe one yesterday. Between dealing with her symptoms and making the trip to the vet I was in a lot of pain.

Then, just before bed, she threw up. It was more vomit than I could have ever imagined a tiny dog like her could produce. So me and my migraine had to stay up and do some laundry. Then spent the rest of the night checking on Gypsy every couple hours to make sure she didn't need to go outside.

Poor little girl. Her need to snuggle increases when she isn't feeling well so we will be doing little else over the next day or two. That works out well because I need the recovery time as well.

I no longer have any sense of what time it is. My head is in a lot of pain and, despite being extremely fatigued, I can't seem to fall asleep.

At least Gypsy seems to be feeling better today. How is it only Wednesday!?!

Lent and the Unintended Migraine Trigger

I've never been a fan of lent. I won't bore you with all the reasons but I do want to talk about why it bothers me as a migraineur. It's all about the stench of rotting fish in the garbage and my sensitivity to smells. For those of you who don't know, one way many people observe lent (the time between ash Wednesday and Easter) is by eating fish on Fridays. The increased fish consumption in homes means there is suddenly all kinds of fish parts and fish soaked trash left to rot in garbage bins.

This is a real problem for people like me, who live with chronic migraines that are easily triggered by smells. It has been more of a problem since we moved into our current neighborhood about 3 years ago because so many people keep their garbage bins outside. Making matters worse, garbage gets collected here on Thursdays so the Friday fish has the whole week to rot and work up a terrible stench. This year has been especially bad because we've also had warmer than usual weather.

It has gotten so bad that I can't stand walking anywhere near what I'm calling the lent houses. That might not sound like a big deal but the daily walking I do with our dog is very important to both of us physically and mentally. Our neighborhood consists of one main road only a few blocks long, with two small cul-de-sacs. The lent houses are at the beginning and the end of our neighborhood, with our house near the middle. Our walking now consists of going a few houses in one direction, turning around and going the other direction a few houses and then back home.

The poor dog doesn't understand why I won't take her on a full walk and the decreased exercise leads to frustration. Even avoiding the worst of the stench I feel like the it follows me back inside the house. I don't know if it gets stuck in my nose or if some of it gets on me. Either way it takes a bit to shake the smell off.

The smell is so bad this year I find it impossible to believe that it doesn't bother people who have a regular sense of smell and no migraines. This year lent doesn't just bother me. Now I rue lent and can't wait for it to be over.

I guess I should just be glad the houses immediately surrounding our house do not do this and that the wind pushes the scent away from our house instead of towards it. At least I'm safe home. That's certainly a plus.

A Look Back at a Productive and Trying Winter

Winter wasn't very winter-like this year. We had a couple really cold snaps and a couple snow/ice events but otherwise it wasn't much of a winter. In fact, February has given us so many days in the 60s and 70s that the outdoor plants have already started to grow leaves and the grass is turning green again. It appears spring has already sprung in St. Louis. Let's take a quick look back at the winter that was.

Winter Favorites
My very favorite find of the winter (and of the year) was the Cloudstepper line of shoes by Clarks. I had spent a good portion of fall and early winter looking for shoes with enough cushion and support to help me best cope with the pain that continues to plague my poor feet. I researched online and I tried shoes on in stores. I was becoming increasingly frustrated by the "comfort" shoes brands for their lack of cushioning. Even the "diabetic" shoes brands (made specifically for people with diabetic nerve pain) were surprisingly stiff. They had support but not the softness my feet need.

The Clarks Cloudstepper have plenty of give in the shoe base and also in the inserts, which is what makes them far superior to any of the other shoes I tried on. After all the searching and shopping I had done it was such a relief to put my feet into these shoes. I got a couple pairs and will be going back this spring to get a summer sandal.
________________
Much like this past summer and fall, I've been watching plenty of Netflix and Amazon Prime. I found myself engrossed and entertained more than usual by one show in particular - The Moaning of Life with Karl Pilkington

You may have seen Karl before, he was on The Ricky Gervais Show and An Idiot Abroad. This latest show is one part documentary, one part travel show and one part opinion piece. It follows Karl as he explores what it means to be human, through his own nontraditional perspective. I think what I love so much about watching him is that I relate to him. He doesn't quite fit the norms of present day society. His thinking has a certain logic and simplicity that is fun to watch. The whole show is just Karl being Karl - encountering the world and commenting on it. Doesn't sound like much but it was wonderful!

I also really enjoyed The OA and would recommend that to all you Netflix streamers out there.

Winter successes
The big success story of the winter was finding some measure of relief from the sudden increased pain in my hands and feet with nortriptyline. I had hoped for more relief than I'm getting but any relief is better than none. I'm just so happy that I'm not in as bad of shape as I was prior to starting on this medication.

The other success was the unexpected discovery of the perfect picture to put over our fireplace. When we first moved in here 3 years ago, I put up a good-enough-picture as a place holder until I found one that was just right. The search was passive because I knew one day I would happen upon the right picture and that happened just earlier this month.

Van Gogh is all over our house. I'm a big fan of his work, never growing tired of looking at these paintings. This one was grand enough in size and setting to make it the perfect one for above the fireplace. Plus, I didn't already have this one on any other wall.

Winter failures
The house hunt ended in failure. We were not able to find the right place, in the right area, at the right price. I don't consider the entire ordeal a failure because the outcome was good, but it was unfortunate that we couldn't make it work.

Winter highlight
Spending time with hubby.

We got to spend a little more time together this past December than we usually get to. Plus the warmer February temps have helped us to get out and enjoy some time walking with our fur daughter, Gypsy.

We went to the track at the nearest high school so hubby could run and Gypsy and I could walk. She had a great time prancing around and hanging out on my lap to rest. She seemed to enjoy walking the track much more than the park because she wasn't anxiously looking to cover other dog scents with her own pee. She literally was prancing instead of walking and sniffing like she does at the park. Such fun to watch. Plus, the track was better for me to walk on than the cement and blacktop we walk on at the park.

Winter lowlight
Having our house on the market and house hunting sucked. Ultimately, I'm glad we did it because I feel like it was important to explore what it would like, financially, to make this move. On the surface it looked like we could save big money by relocating across the county but we discovered that wasn't the case. Still - it required a certain amount of time and energy and that was tough.

I've also spent a good deal of time suffering, as always, with my migraines.

Thankfully hubby is always willing to help out when I can't get up, and sweet little Gypsy is always by my side to comfort and protect me. Okay, so I don't actually need protection but she's not convinced of it. Better safe than sorry.

Welcome spring! I'm so glad you're here.

Taking the House Off the Market

Hubby and I have decided to take our house off the market and stay put. We were unable to find a house we loved, in the area we wanted to be, at a price that made sense for us. 

I'm glad to no longer have strangers coming through our house. People are not always respectful. One person left an oil stain on our driveway. Another one picked up and dropped an insect trap in our basement, somehow getting the super sticky glue onto the cement, walking through it and spreading it all around. A couple of them left lingering perfume. No good.

Plus, it'll be wonderful to no longer spend all that time and energy prepping the house and looking at houses. No more inconvenient showings. No packing or unpacked. None of this was migraine of fibro friendly. 

Life is returning to normal, now with the comfort of knowing we are presently in the optimal situation. 

Selling and Buying in a time of Chronic Pain

This selling/buying is not migraine or fibromyalgia friendly. Most days there are no new houses to look at. Inventory where we want relocate is very low and when something hits the market it is usually sold in 1 or 2 days, which means we have to go and look at a house as soon as it hits the market. We've also had a lot of people looking at our house. All of it is hard.

The house is in a pretty constant state of ready for a viewing but there are still several things that need to happen before each showing. The roughest is opening all the room darkening curtains, removing the blackout cover I have attached to the bedroom windows and removing/folding the furniture covers. Then upon return I have to replace everything so we are ready for regular living. All of this is a challenge for my fibromyalgia and migraine prone head.

The leaving is also difficult. Most of the time there is no place to really go with the dog, so we just drive around the corner and wait it out. Sometimes I walk around a bit with Gypsy to help her feel less anxious but mostly we just wait in the car. It's uncomfortable, I have to put up with the lights and there isn't much of anything to do. This, on top of the added tasks to get ready and settle back in, is rough on my easily triggered migraine head.

It's not so bad to do once every day or two but we had 5 scheduled leaves over this past long holiday weekend. We also looked at a potential houses. Boy was that rough. Even after taking yesterday off, I still haven't recovered from all that activity.

I'm struggling to manage my migraines and fibromyalgia through this process. It can't come to a close soon enough. Right now, it's really just about finding another house cause we have plenty of interest and even offers coming in but have yet been unable to settle things since we don't have a place to go. The whole thing is a giant hassle. I hope in the end it will have all been worth it.

To Try Botox Again or Not

So I've been going to a neurologist for the pain in my hands and feet. Because I also have chronic migraines the doc wants to know more about that too. He specifically asked if I had tried botox before. I explained that I had two rounds of injections, neither of them effective and I had a reaction to the 2nd round. He then started pushing for me try it again. He said it can take as much as 3 rounds to be effective.

I wasn't really in the right frame of mind to make a decision like this because I wasn't there to talk about my migraines and, while he is a neurologist, he is not a migraine specialist. But he went ahead and told his assistant to start the process with the insurance company.

The circumstances surrounding my first 2 rounds are a bit complicated. The first round was in the early months after it was approved by the FDA for use as a chronic migraine preventative. I received the injections from my migraine specialist at the Mayo Clinic. It was quick and painless but ineffective. Meantime, we're in the process of moving to St. Louis and my specialist tells me about a wonderful colleague of his he has known since medical school, who is also a migraine specialist in St. Louis. Some of you might know him as he has been active in the migraine community - Dr. Todd Schwedt.

I loved the idea of having a local migraine doc so I started going to him. It took several months to get the initial appointment and several more months to get the insurance company to agree to allow me to try it again. Of course, far too much time had passed for the first round to to help build up to a thearputic level with the 2nd round so we were basically starting all over again. This time it was administered by the resident and supervised by Dr. Schwedt. The whole thing took much longer and it was quite painful. I regret agreeing to let the resident do it.

Worst of all, I had a reaction to this 2nd round. For almost 3 months I constantly felt as though I was getting the flu whenever I would do anything. It was this extra layer of exhaustion that would kick in coupled with a low grade fever. I also got a red mark between my eyebrows that never went away.

Within a month after getting the 2nd round of injections, I received the terrible news that Dr. Schwedt was leaving Wash U/Barnes Jewish. Further investigation revealed that he had taken a job with the Mayo Clinic in Arizona and he was being replaced by two neurologist - neither one a migraine specialist. Between the reaction I had to the 2nd round and losing my migraine specialist I decided I was done with botox.

I do see how this might not have been a completely fair trial of botox. But I also didn't think it was worth doing more since I felt so lousy after that 2nd round. Even if it had been effective in helping with my migraines, which it hadn't, I'm not sure those side effects are worth a small decrease in my migraine frequency because it made even my migraine-free days difficult. I'm honestly not sure if I want to give it another try.

Right now I'm still working to figure things out with my hands and feet. I'm still feeling a bit overwhelmed by the additional pains and loss of functionality. I'm just not sure that I am up to dealing with additional limitations and side effects from the botox.

I've gone ahead and let the office help me investigate what the cost would be through my insurance. It's kinda expensive as you can imagine, plus I'll have an additional fee for administration of the injections.

Another misgiving I have is that this came solicited by the doctor. I don't know this doctor very well as we have only met twice and both times the main subject of our time together is the pain in my hands and feet. He is a neurologist and not a migraine specialist. He doesn't have much of my migraine history at all because he didn't inquire. He jumped rather quickly to asking about botox and seemed a bit pushy to get the process started. I am not convinced his motives are completely pure. And I certainly never would have chosen him to help me manage my migraines.

My gut is telling me something isn't right. I think the best thing to do is to listen to my gut on this one. I don't think I should let this guy give me botox injections. I don't think now is the right time to do a botox trial. But I'm still undecided about the notion of giving it a try again. Maybe it's something worth exploring further with a migraine specialist, another time.

Medical Costs and Billing Needs to be More Transparent

I have my fair share of doctor appointments. In fact, I've probably had more than my share over the past 11 years since my migraines went chronic. Over the years I've grown increasingly bothered by the way billing is handled. 

We make an appointment and we check to make sure the doctor is covered by our insurance. Then before we can see the doctor we have to sign a paper giving permission to be treated, to have our insurance billed for the treatment and vowing to be financially responsible for anything that isn't covered.

I get why we have to sign this paper. The doctors and practices need to protect themselves BUT there are no financial protections in place for us as patients.

Let me explain. 

1. We never see an itemized bill. The insurance company gets a bill and they make adjustments and payments based on that bill. Then, when applicable, we receive a bill for whatever portion we are responsible for. We never have an opportunity to verify anything in that bill. 

Call me crazy but doesn't that open this entire system up to fraud and mistakes? How much money is being wasted because there is zero transparency for and accountability to patients for the billing process. 

2. Nobody can help us figure out what something is going to cost in advance. Considering the high cost of every single medical encounter, I find it outrageous that pricing isn't readily available and disclosed to every patient, every time. 

For example: I went to see a physical therapist several years ago. We started our sessions at the end of one year and it continued into the beginning of the following year. I never saw a bill early on because I had met my out-of-pocket maximum. It wasn't until the new year that I saw what was being charged. To my horror, I discovered that I was being charged more for appointments when I asked questions than when I didn't. 

The physical therapist I was stuck with was super obnoxious and she felt the need to drone on and on about her farm and her horses and other shit I just didn't care to hear about, so often I would try to redirect the conversation by asking about my progress and getting ideas from her about things I could do better. Turns out, every time I did that I, she charged more for the appointment. So me and my insurance both paid her more money simply because I didn't have the energy to try to pretend to care about her personal life. I had nothing in common with this woman and I don't think it's right for her to fill silence during our appointment with personal stories. If we had to talk I wanted it to be about something germane to my appointment. 

I wish I had been told in advance that my appointment would be more expensive if I asked questions. Let's not gloss over the fact that asking questions during a pt session SHOULD NEVER COST MORE. 

Cost needs to be transparent and formally discussed at every stage along the way. Basic costs should be discussed before every appointment of every kind. Then if the doc needs to do more that should be discussed at the time. Then before leaving both parties should sign off on all of the expenses that were incurred.

I've Lost Pieces of me to Chronic Migraine and Fibromyalgia

Often I feel as though so much of my life is happening to me, beyond my control. I never know when a migraine will hit but I can be certain I'll have lots of them. The list of things I can't do is long so I don't often make plans. Those I do make are constantly in the stressful shadow of the uncertainty surrounding my health. 

Obviously everyone has to deal with things that are beyond their control in life. But it's different now than it was before I was living with chronic migraines and fibromyalgia. Before the things I couldn't control was limited to what others were doing around me. I still can't control any of that but now I have also lost control over much of myself. 

I can't control my migraines or my fibromyalgia. Sure I try to avoid my triggers as much as possible and I work hard to structure my days to minimize the various pains, exhaustion, nausea and other symptoms. I even put a lot of effort into staying positive and making the most out of the days that aren't too bad. Despite my best efforts I still have an average of 18 migraines a month. I still experience fibro flares. Inexplicably, it even seems my fibro pain has gotten much worse in the last 6 months with the addition of this foot and hand pain. 

At times I feel like I'm failing at life. I know this is just my mind making generalizations that are not necessarily factual. When I think about it I can point to some successes. Still, the failures feel frequent and significant. I lost my ability to work, my career, and with it the sense of pride, accomplishment and independence. I lost most of my hobbies and with it a lot of joy, balance and growth. 

I've lost pieces of me and pieces of my identity. I used to be a lot of things I no longer am. And it's hard. 

Putting our House on the Market - the Migraine Way

After much consideration, hubby and I decided to put our house on the market. We love our house and the thought of moving makes both our stomachs turn but we stand to save some significant money by moving to another part of the county, plus hubby can shorten his commute. We have not committed to moving but we have committed to giving it a try.  So here we are.

Thankfully there wasn't a whole lot of work that needed to be done to prepare the house for showings so we were able to get it on the market pretty quickly. Because of my chronic migraines and fibromyalgia, having a simple get-out-of-the-house-quickly plan was most important. I needed a simple plan so that if I needed to prepare for a showing during a migraine, I could do so without much work and without much thought.

To that end I put together two bug-out bags. One has all of our small electronics and financial stuff in it and the other has all of my prescription drugs and some water. I've also stashed an eye mask in the clove compartment just in case I need to shut out the light.

So far, we've had plenty of notice for the showings but you never know when someone will want to get in right away. My plan has removed most of the stress from the situation.

I've uncovered an unanticipated downside to letting strangers into our home. Someone came through wearing so much perfume that I could smell it for more than an hour after they left. I tend to believe nobody should ever wear so much perfume that the smell lingers that long. I wish I could ban people like that from coming in here. My migraines have made me very sensitive to smells so I was quite annoyed when we returned home and had to endure this woman's perfume for a time. Although, if I had to choose, I would pick perfume over cigarette smoke any day.

Honestly, I don't know that there is any way to prevent such things from happening so I've resigned to just put up with it. After all, it's not as if everyone coming through leaves their smell behind.

Seeing Some Fibro Pain Improvement from Nortriptyline

A bit of good news after two attempts to find a medication to help with the nerve pain in my hands and feet, I'm actually responded to the latest one - nortriptyline. I've been on a low dose for about a month now and in the last week or so I've noticed some improvement. I still get the pain when I'm on my feet or do any cleaning or whatever with my hands. By the end of the day I'm still in pretty bad shape but the aggravation of the day usually resolves overnight. I'm also able to do a little more with my hands before the pain takes over.

I had a follow up appointment with the neurologist this week and he is going to have me slowly increase the dose in hopes of seeing even more improvement. The thought of actually getting some relief, well, it's thrilling! I spent so many years trying medications for my chronic migraines and never seeing any benefit. The constant ups and downs of hope in a med and disappointment when it wasn't effective conditioned me to NOT expect relief. Especially considering the fact that all of these meds are ones I've tried as migraine prevention.

As always, the downside is in the side effects. The big one with this medication is the dry mouth. It wasn't bad at 10mg but it was more noticeable at 20mg. I just increased to 30mg and it has already become a bigger issue. Also my doc noticed I've developed a small tremor in my hands. It was minor enough that I hadn't noticed it. He said this can be a side effect so it is something we will keep an eye on.

When it comes down to it, the benefits far outweigh these side effects. I might actually be able to resume using my hands and feet in a more normal fashion. Even retaining the small benefit I've already seen would be priceless to me. The chronic migraines and other effects of the fibromyalgia are hard enough to cope with.

The Challenge of Understanding

Every now and then one of my friends will encounter some challenge in their life that they never saw coming (divorce, rough pregnancy, etc). Suddenly they are thrust into a terrible challenge and they find themselves being judged and hurt by the response of people around them. As they emerge from it they will write a lengthy facebook post preaching about those challenges and how the responses of others has hurt them and how it only added to their burden and made coping more difficult. They go on to plead, with all who read, to show other people, going through their specific challenge, compassion and kindness because it actually is really difficult and can't be understood unless you've also gone through it.

I tend to be of the mindset that the only way to understand what it's really like to go through anything is to actually go through it. Even then, you can only ever know what it's like to go through it as you, with your temperament, personality, intellect and background. So when I see my friends make these kinds of posts I always want to reach out in the comment section and point out that this is true for all people going through all challenges - especially when this is coming from someone who has gone out of their way to paint entire groups of people with harsh judgement, which completely lack perspective and context.

As someone living with chronic invisible pain, I'm constantly facing these sorts of challenges. Yes, it does add to my burden and make coping with a very difficult situation even more difficult. I totally get why they want to reach out and plead with people to understand and be kind to those who are going through the same thing. But I keep finding myself feeling frustrated when the lesson they learn is always specific to their situation. Even if unintentional, their plea that we shouldn't minimize the experience or judge someone going through X, implies it's still okay to think people going through Y are lazy, weak, immoral, or whatever. Again, this feels especially true coming from people who are unapologetically judgemental.

It's the same with politicians. Often times when you find a politician fighting hard for rights, research and policy change for a specific populations it's because they are personally impacted by it. We have a state rep who ran for reelection this year, who boasted in his commercials about how he fought to make it easier for children with autism to have access they didn't have before because he had a child with autism and knew the challenges. That's all well and good for children with autism but I wish the lesson he learned was that all children, facing all kinds physical, mental and socioeconomic challenges deserve the benefits he fought so hard to get exclusively for children with autism.

Why can't we all see that we all deserve the same go at life? When we all do better we ALL do better. Why is that such a hard concept to realize?

Feeling Defeated and Weary Today

It's so defeating. The inescapable, intense pain. The nausea. The exhaustion. The pulsing. The sensitivities. The damn chronic migraines - I just hate this!

I have things to do but instead I'm fighting the migraine monster. There is almost nothing left of ME. The triptans allow me to regain a very tiny piece of myself for a few hours here and there but the migraines are all consuming.

Yeah, yeah, eventually it will pass and I will get some of me back. But I don't know how far off relief is. All I know is that it won't last long before another migraine consumes me.

Even after 11 years of living with chronic migraines the pain still frightens and overwhelms me. I feel weary today.

The Migraine Medication Game

I hate the migraine medication game. You know the one I mean? When you are only allowed to treat 9 of the 18 migraines you have each month so you have to try and pick which ones to treat. I have lots of guidelines to help me make my decisions.

Don't:

-treat migraines that are less severe

-wait to long because the meds are most effective when taken early

-treat any migraine that starts in the late afternoon or evening because relief can take up to 5 hours

-treat too many early in the month because you never know what's to come

-take more than 2 pills in a 24 hour period, but taking 2 pills in one day might mess up things for the next day

Do:

-treat the most severe

-add in some ibuprofen before taking a 2nd pill

-take them as soon as you can because the pills are more effective that way

The trouble is that I'm not psychic. I do my very best to guess how severe each migraine will be, but it's never really more than a guess. I'm wrong as often as I am right and the price to being wrong is steep.

Yesterday was a great example of how things can go very wrong, even when the guidelines are followed. Here's what happened. I was in the early stages of a migraine in the late morning and so I closed all  the shades and hunkered in. By 2pm I was moving into the pain phase and decided to go ahead and treat the migraine since I hadn't had a migraine for a few days. An hour later, once the medication started to hit my blood stream, the pain got worse. My rescue med always makes the pain worse before it starts helping. Unfortunately, this was one of those times when it took more than 5 hours to start providing any relief. And when the relief came, it was inadequate and only about an hour and a half before I was going to go to bed. 

My day was ruined and, worst of all, I wasted a precious rescue med in the first week of the month. 

I HATE this game!! I'm so tired of playing this damn game!