Whimsy Wednesday

Here is a few minutes of stand-up to make you laugh on this Wednesday. Have a great day!

4 Aggravating Symptoms of Brain Fog

These days my brain never functions as it used to. How could it? Both chronic migraines and fibromyalgia cause brain fog. Even calling it brain fog doesn't really even begin to describe the many aggravating brain dysfunctions that have become common place in my life.

Searching for a Word: This is how it usually goes. I know exactly what I want to say so I begin speaking. At some point, often towards the end of the sentence, right when I reach the key word, I hit a brick wall and the word is hiding from me. Sure, I could describe my word, tell you all kinds of things about it, but I can't bring it out. When this happens I get this vision in my mind's eye that I am walking through this empty cavernous mind, searching for my word. I see it scurry around in the shadows, just out of view. I know what word I want to say, but I just can't. If given enough time, I can almost always find it.

Trouble Translating Thoughts Into Words: This is similar to searching for my illusive word, only instead of my brain not being able to just find the one word mid-sentence, I can't even begin to say what I'm thinking. Again, I know what I want to say but it is like my brain just can't translate the thoughts into words. To others, often this looks like I'm just not responding to a question or participating in conversation properly. When this happens I feel like I've gotten lost in my own head. The mind is still working but nobody can tell. I always snap out of it and if the conversation hasn't moved on completely I'll be able to speak after a noticeable, annoying period of silence.

Difficulty Concentrating: Much like my energy levels, my ability to concentrate is limited. If I allow my brain to rest frequently when trying to complete a task that requires concentration the quality of my focus is usually better and I find that I can do more of it. That's why it often takes me 2-4 hours to compose a simple blog post. Also like my energy levels, during times of increased pain either from my migraines or my fibromyalgia, I experience an increase in the difficulty I have concentrating. This has made me a super slow reader. It can take me a month or more to read one book.

Not Being Able to Interpret What I See: This might actually be related to the trouble I have concentrating. Every now and then, my brain will look at something and just not be able to accurately interpret what it is. The best example I can think of is when grocery shopping, sometimes I will look right at one of the things on my list and it just won't mean anything to me. I will get everything else on the list but that one thing that my brain just couldn't interpret as an actual item. This doesn't happen frequently but it does happen.

These brain symptoms are difficult to cope with. Often they leave me feeling frustrated with my inability to communicate the way I want. Worse, in the moment, when my brain is failing me, I feel a tremendous amount of pressure to get it out before the people I am with just move on. I'm often too late, they just can't wait. Now, I know they are also frustrated by these long lapses in my brain. Especially in this day and age when people move so fast. We can't stand waiting more than 1 second for a webpage to load, we certainly don't want to wait 20 or 30 seconds for someone to find their word or even begin responding.

I guess the fear is that they will think I'm dumb, or too hard or annoying to talk with because of how my brain works. Clearly people who would feel that way are not people I want in my inner circle. However, I can always tell when people are getting frustrated with these symptoms and that always makes the situation that much worse for me. It increases my own frustration, making it more difficult for me to take the time I need to find my words or translate my thoughts. Nobody want to be a burden to talk with.

The best thing anyone can do in this situation is to just be patient and kind. I did it for years when I worked in an assisted living home for the elderly. I know it helped the residents I worked with and I know it helps me when I'm in these situations. Part of me wishes that karma would step in and bring me more people willing to be patient and kind with me and my brain fog.

Why are we in such a hurry anyway?

Distracting Myself With Nostalgia

I've been distracting myself with classic 1980s movies on Netflix for the past week or so. What a fun decade: the hair, the music, the make-up, the clothes, the slang... Boy, it all brings back so many memories. I'm up to my neck in nostalgia.

Here is the ground I've covered so far:

Flashdance

Source

Heathers

Source

Can't Buy Me Love

Source

Pretty in Pink

Source

Adventures in Babysitting

Source

Dirty Dancing

Source

3 Men and a Baby

Source

Ghostbusters

Source

When A Migraine Is At Its Worst

When the sound of running water is painful...

When a sneeze makes you feel like your head is about to explode...

When any movement, no matter how small, makes you feel like you are going to vomit...

When the smallest glow of light feels like daggers in your eyes...

When you are filled with anxiety and fear because your meds are not helping enough...

When you can't focus on anything longer than 4 or 5 seconds...

When you can't bear stimuli of any kind...

What's a migrainista to do when a migraine is at its worst?

This is a trick question. There really is nothing we can do but wait out some measure of relief.

Damn.

Whimsy Wednesday

This is a great sketch from Saturday Night Live. Hope it bring you a laugh or two on this Wednesday.

Have a great day!

Trying to Stop the Soliciting

Now that we are once again living in a detached house, we are being subjected to frequent door-to-door peddlers. Some want to bring us the word of God, others want to reside our house, cut our lawn or sell us cable. All of them make me mad. 

Each ring of the doorbell sends our chihuahua into a loud barking fit. Most of the time they arrive when I'm feeling terrible, or trying hard to manage my environment in an effort to prevent my pain from getting out of control. 

Early on, I would answer the door because the people coming by had legitimate business with us. Since then I've learned to just not answer the door. My family and neighbors know I don't feel well and if they need me they text me. Everyone else is just an annoyance and a real pain - literally. 

Even though I don't answer the door, the fact they are showing up, disturbing my peace and my delicate head, is no good. After yesterday's disturbance I've devised a plan to put a stop to it. Here's the plan: put up a big ol' sign. I found these inspiration signs on Google:

This one is funny and a little true but I'm not wild about the bright yellow

Well, I also don't want Girl Scouts coming by - too expensive.

I like that this one is aesthetic 

This may be a lie but one worth telling if it keeps
people away.

Okay, so it's not a great plan and I don't really think it'll be effective but I have to try something. If you have any ideas, I'm all ears.

A Review of Axon Optics Therapeutic Eyewear

Last month I was contacted by Axon Optics, with an opportunity to try a pair of what they are calling therapeutic eyewear. These are FL-41 tinted lenses that are designed specifically for people who are light sensitive, filtering out the wavelengths of light that are believed to be most problematic.

Before I go into the details of my experience let me just give you a little background info. I'm very light sensitive. I've been this way since I first started having episodic migraines as a young child. This sensitivity has gotten much worse since my migraines went chronic. Even on a low pain day I struggle when looking at things. I can only read for short periods of time, I am constantly averting my eyes when on the computer or watching TV, I wear shades even on cloudy days and have my home a virtual cave so I can control the lighting... For me light is both a trigger and an incredibly painful stimuli during all the stages of a migraine attack.

Here is what I found:

Option, option and more option. They have 11 different frames to choose from, plus the option to send in your own frames to have fitted with their FL-41 lenses. Each of the frames has additional options. They come in varied sizes and colors, they come lighter for indoor use and darker for outdoor use, they can be polarized and even made into transition lenses. 

I ordered the Cover Rx frames designed to fit over prescription glasses, in the darker outdoor tinting. I don't wear glasses but I like the wrap around coverage and the loose fit that is much less likely to pinch behind the ears. The glasses came in this carrying case with this cleaning cloth.

I've been wearing them off and on for about a month now, going back and forth between these special lenses and my regular sunglasses in an effort to compare them side by side. I wore them on the long drive from St Louis up to Rochester, Minnesota and then back again. I wore them out running errands, walking the dog, and even a couple times indoors while on the computer.

What I loved:

- The frames are a great fit thanks to the sizing guide and sizing options. My face is sort of narrow and smallish so I appreciated that the frames came in different sizes. Even better they don't pinch behind the ears.

- When I am wearing them my eyes feel relaxed. I don't know how else to describe what is happening. This isn't something that I've ever felt before with my regular sunglasses. They simply feel relaxed.

What I wasn't crazy about:
-The only thing that bothers me a bit is that after wearing for them for a while they leave an indentation where they rest on my nose, which can take a few hours to smooth out. The glasses are not pinching my nose or in any way uncomfortable/painful. The mark is simply a matter of aesthetics and, frankly, isn't normally a big deal. I might not wear them on my way to be photographed or big event, but those things happen pretty rarely around here. Seems like this might be happening because they are designed to fit over glasses and I am not using them that way.

Overall
Migraine is a complicate genetic, neurological disease. The world is full of triggers and exacerbating stimuli so I wouldn't go so far as to say that these glasses are a great preventative or treatment. BUT that wouldn't be a realistic expectation, would it?

For me, these glasses make a noticeable and consistent impact on the way my eyes feel when outside or in otherwise bright environments. I have come to see my glasses as a kindness I show my eyes and, by extension, my head. They are another great tool at my disposal as I continue to try to live the best I can despite my chronic migraines and fibromyalgia.

The Trouble With Forms

As I wait (just 7 more weeks now) for yet another new-patient appointment with yet another possible PCP, I've been instructed to fill out a rather large packet of paperwork. Over the past 8 years I've filled out more than my share of these packets, what with all the moving and then searching for the right doctors within each of the three categories (PCP, neurologists and OB/GYN) at each location. No doubt you've filled out many of these packets yourself.

They need all your demographic, payment and billing information. They ask for all the usual medical history, symptoms and listings of your current medications. They have all kinds of releases and waivers to sign - mostly written in language that is really difficult to understand when your brain is all foggy from either your chronic migraines or fibromyalgia (or both).

The general gist is usually about the same but, feeling like I've become a bit of a connoisseur of new-patient forms, not all forms are created equal and not all forms are useful tools. These packets take some time to complete. You have grab your insurance card, reference your medication list and migraine tracking sheets. You have to sit down and really think about how to best answer these questions in the small spaces provided. You want to be concise yet thorough and complete. You want to write legibly, which for me takes some effort - partly because I've never had great handwriting and partly because I so rarely write by hand anymore.

More often than not, you walk in with all your completed forms only to have them completely ignored. The nurse or medical assistant who sets you up in an exam room, will take your vitals and then ask you all those same medical questions you spent all that time writing out. Only now, instead of really listening and responding he or she is typing furiously on a small laptop. Then the doctor comes in and basically does the same thing. This is how mistakes are made.

I've only had my forms reviewed with me by a couple doctors, most seem to have their own methodology outside of the forms. I'm totally okay with doctors wanting to do it their own way, but then don't waste my precious time and energy filling out all these forms. I wouldn't mind filling them out so long as they were used but you never know who is going to use them or not so you always have to fill them out.

This latest packet of forms I've been working on for my appointment in September is a great example of bad forms. They are full of misspelled words, incomplete questions, and don't provide nearly enough room for written responses. Plus, almost all of the questions are asked twice - this is one I've never seen before. They have NOT given me duplicates of the same forms, they actually just have so many different forms that ask all the same questions in slightly different ways. If anyone in that office were paying any real attention to these forms they would not be so full of mistakes and overlapping questions. As a patient, I find it difficult to invest any energy in filling them out when so little effort was put into creating them. Clearly this is not a useful tool for the doctors in this practice.

Fair or not, I find it difficult to hold onto much hope that this doctor will be any good based solely on this particularly bad packet of forms. I hope I'm wrong.

Whimsy Wednesday

Check out this great parody of "Happy" by Weird Al called "Tacky." Made me laugh. 

Have a great day!

Waking Up With A #Fibromyalgia Flare

Source: Pinterest

It happens far too often. Morning arrives and as I slowly crawl out of sleep I am hit with an overwhelming feeling of exhaustion accompanied by widespread pain and soreness. Was I sleeping or did I just complete a triathlon and quick run through one of those America Ninja Warrior courses? I can't tell for sure.

Not only do I wake more tired than I was before I went to sleep but I'm also incredibly sore, achy and, in some spots, in pain. My hands, my wrists, my arms, my back, my neck, my legs, my feet, my eyelids - oh my! What is happening to me during the night?

Clearly this is my fibromyalgia doing its thing - getting mad maybe because I've done too much, done too little, or just for the fun of torturing me. Let's face it, fibromyaglia doesn't need a good reason to make the body feel like it has just been through a tremendous physical ordeal. But after overdoing it and then spending the past couple days on the couch trying to recover, it's no surprise this morning was one of these mornings that I received a fibro smack down. Just another great reason to keep to my slow steady pace.

Relieved To Be Taking Better Care Of Myself

I'm officially hiding from the world. All the curtains are drawn, all projects on hold. I'm snuggled on the couch with my more-than-willing snuggle bug Gypsy, streaming old favorites on Netflix, trying to distract myself through the worst of the pain. I'm taking good care of myself and don't feel even the slightest bit of guilt over it. What relief it is. 

Only a couple small slivers of natural light
make it into the living room.

Me and Gypsy 

Overdoing It and Hitting a Wall

Wishing I was asleep and feeling this comfortable.

I've been overdoing it for a couple weeks now. Largely this is attributable to unexpected things popping up that need immediate attention i.e. Gypsy having a reaction to her flea/tick preventative and needing a spur of the moment bath to get it off, then two days later breaking out in hives due to contact with something else and needing medication. But, honestly, some of my activity was simply me pushing myself to do things I wanted to do but really didn't feel up to doing. 

At this point, I've pushed myself too far. I feel as though I've hit a huge brick wall that just won't allow me to continue - the brick wall being my chronic migraines and fibromyalgia. I'm overly medicated and my head is hurting worse. I ache all over and am deeply, deeply exhausted. My mind has turned to mush. All I want is to NOT go anywhere or do anything outside my normal household chores and blogging. I need my simple, quiet daily routine. Without it, the tiny bit of functioning I'm capable of disintegrates into a messy blob of pain.

I guess sometimes I just want to forget that I have limitations. Clearly pretending I'm normal only makes matters worse but I still find myself doing so from time to time. Fortunately, it seems like I do this less and less as the years tick by. 

Whimsy Wednesday

Remember this fun old song and video from Boyz II Men? It always makes me smile and I hope it will make you smile today. 

A Quick Look Back at Last July

Earlier this morning I started thinking back to last July. It was about this time last year that our house hunt turned into a house build as we started the very long, stressful and exciting process. Last July was full of anticipation. All kinds of time was devoted to imaging what the new house would look like and what it will be like to live there; wondering what our future neighbors would be like and how we would fit into the new neighborhood.

Hubby and I on our lot last July

Now that we've been in the house for almost 7 months we have answers to all those questions. The new place feels like home. We are knee deep in the decorating process. We love our neighbors and the neighborhood. Best of all, we're building new memories and setting down roots in our small home. 

We're not completed settled yet. We still have the rest of the year to battle with the builder over things they didn't do right but we are well on our way. 

The past year has been a big one for us and I am feeling very blessed. 

Misunderstanding the Difference Between Giving Up and Accepting Life With Chronic Pain, Part 2

A few days back I did a post about how medical professionals may misunderstand the difference between a patient who has given up and a patient who has learned to accept that medicine can't yet cure us of our chronic ailments. By the end of the post I had only posed the question - "how do we get them to understand?" - and have since been thinking about it.

Trust me - I'm the patient.
This is my life. This is my body.

Trying to educate a professional about something related to their profession when you don't have the training and experience they have is tricky business. Of course, that doesn't mean you don't have something of value to teach them, but convincing them of this is an uphill battle. I think that hill is even steeper when you present as someone in chronic pain. We often come with all sorts of unwarranted labels (pill seekers, fakers, attention seekers, weak, hypochondriac) not to mention some think our ailments are all in our heads or that the conditions don't exist  (fibromyalgia, chronic fatigue, etc.).

Imagine walking into a doctor's office. A nurse takes your history and then the doc arrives and does his or her I'm-a-god routine of making assumptions, asking a few questions, rushing to judgment and then giving you the old brush off. Maybe it's a comment like, "Have you seen a psychiatrist?" or "I'm not going to prescribe you any narcotics." even though you never asked and it never crossed your mind. The brush off can come in many forms, no doubt you have been experienced it in at least one form if you live with chronic pain.

I've come to believe that there is nothing we, as patients, can do to impact the beliefs and behaviors of professionals like this. What we need to do is find are practitioners who at least believe our conditions exist. That should be the bare minimum we demand. Beyond that, hopefully we can find practitioners who are willing to form a partnership with us. I believe it is only with this type of professional, we have a chance at sharing our experience in a meaningful way.

My hypothesis is: If we can find a way to
     1.Shine a light on the possible assumption
     2. Show that we understand how it may look
     3. Explain why it is not true
then we might have a chance to influence the possible assumption. Assuming you are sitting in front of an open minded, partner-oriented doc.

With all of my future appointments I am going to start saying the words - "I'm not giving up but I'm done trying every variation of possible preventative pills. Instead_______" This is where I'll fill them in on my plan to tackle the chronic pain component in order to better manage my symptoms and increase my quality of life. I'm just going to be clear about what I'm doing and why. If they want to get on board and help me-great. If not then the search will continue. I am done wasting time with docs who are not interested in partnering with me.

I don't care if it takes 5 years to find the right person. I will find them. I won't settle. Fortunately, I live in a large metropolitan area so there are a whole lot of docs to try. In the meantime, I know I can manage on my own. I've made it this far, haven't I?

Why the 4th of July is the Worst Holiday

Poor Gypsy

As usual July is off to a rough start. In celebration of the 4th the nation has gotten loud. It might not be so bad if people could just limit the fireworks to the one day but, as it is, this goes on and on for weeks. It seems many in the area have spent a small fortune on at-home fireworks that they launch well into the early morning hours. Last night, from about 9:00 pm through about 3:00 am, our poor little dog Gypsy was terrorized by the din. Between the bangs, booms and the restless, crying chihuahua I got very little sleep.

I don't understand why people think it is suddenly okay to make that kind of noise in the middle of the night. When it gets to past about midnight people are no longer celebrating our nation's independence. They are simply drunk, stupid and setting off legal explosives. What a great combination.

I keep telling myself not to worry. After all we live in a new neighborhood so things might not be too bad this year. But this is our 3rd July in the St. Louis area, and our 3rd location. Both of the other locations were loud for at least a couple weeks following the 4th so I fear the same will hold true here.

This is a rough time of year for dogs and migraineurs alike. Come to think of it, this is also probably a rough time of year for the elderly, babies, small children, other pets, wild animals, people who have to get up and go to work the morning after and people living with other medical and psychological conditions.

Sooo, why do we keep spending all this money on city firework displays? AND Why is it legal to set them off in neighborhoods? I simply don't understand.

Whimsy Wednesday on Thursday

Silly migraine brain - I completely forgot about to do my Whimsy Wednesday yesterday so here is a Thursday version. Just as funny just not as well timed. This week, in honor of my upcoming dental appointment, I chose this fun gem from the Little Shop of Horrors. 

Have a great day!

Misunderstand the Difference Between Giving Up and Accepting Life With Chronic Pain

A few years back (2010) I spent several months going to a physical therapist in an effort to better control my pain. I wrote about it a time or two or three. All this time has passed but I still think about something she had said. Here's what happened:

I had been trying to explain to her just how debilitating the migraines and my other physical issues were (I already had fibromyalgia but this was before I got the diagnosis). I told her how much I missed working and how not being able to was both financially and psychologically challenging. I told her that hubby and I were considering having me apply for disability.

Her response was to tell me that the patients she sees who are on disability are all people who have given up and she didn't think I was a quitter.

I was pretty surprised by this response and didn't even know what to say at the time but I did think about it a great deal. In fact, I still think about it. What she said disturbed me.

1.  It sort of felt like a backhanded compliment. On the one hand she was sort of praising me for what she deemed a determined spirit but on the other hand she was also being sort of manipulative in saying "you don't want to be like these quitters on disability do you?"

2.  I find it impossible to believe all her patients on disability have given up and she didn't give me any examples of what made her think this. The fact that these people are seeking help from her to improve or manage their symptoms indicates to me they have NOT given up.

3.  Being a healthcare profession with extensive education and experience, her opinion could impact the quality of the care she provides to people on disability, potentially the care they receive from other professionals who are part of their team (assuming they communicate), and also could impact the future disability renewal process of these patients.

I can't help but think she must have been misinterpreting what she was seeing in these patients. Back then, despite being in chronic pain for several years, I was still behaving and speaking like someone in acute pain. My brain could acknowledge I was in chronic pain but I was still trying to figure out what went wrong so I could fix and get my life back. I was still desperate and willing to try anything. I was still wasting a tremendous amount of energy and time on finding a cure instead of trying to figure out how to manage my symptoms and do the best I can despite my chronic pain. Don't get me wrong, I was certainly trying to live my best life at the time but that wasn't my primary focus.

Only after coming to the realization that years of trying anything and everything hadn't made a meaningful
improvement in my conditions or my ability to function that I really start to focus on improving my quality of life. I started approaching my medical appointments with more intention and purpose. I started being more thoughtful and discerning about the treatments I was receiving. I started accepting the fact that I was living with chronic pain. I stopped looking to the doctors for a cure.

Maybe this is what my physical therapist was seeing. Maybe the patients she spoke about weren't as slow to come to this realization as I was. Maybe they were already focused on pain management instead of the futile search for a cure. I can see how this might be viewed as giving up to someone who doesn't understand how chronic pain works. But shouldn't someone in her line of work understand this? Shouldn't all health care professionals understand this?

This is NOT giving up. How do we communicate the difference between giving up and accepting that traditional medicine can't cure us  - especially to those who practice medicine?  I would like to explore this more but maybe another day. Right now I just need to lie down.