The Toll Living With Chronic Migraines and Fibromyalgia Has Taken on My Sense of Self and How It Impacts The Way I Am Treated

October has been tough for me. Any crazy thing that could have gone wrong has gone wrong. I've written about some of the details but won't bore you with all the frustrating happenings. Over the weeks more and more has gone wrong. Simple things that should never go wrong - did; and should have been easy to fix but wasn't. They have been piling up and putting me in a bad place.

I honestly was beginning to wonder if I was starting to lose it a little. How could all of my interactions with the outside world turn out like this? Could it actually be me? Was my mind taking me away from the reality the rest of the world experiences?

I've put a great deal of thought into it and decided that while I can be certain I'm not having a mental break from reality, I can't be certain it's not me. Let me explain myself.

People respond to energy and non-verbals. They do, even if they don't know that they do. You can tell when someone is confident, energetic, peaceful, stressed, tormented, sad, self conscious, etc. Like it or not, the world will treat you differently based on what sort of energy you are projecting. I've seen it in my own life and have even used it in the past to become what I wanted to become. The old "fake it until you make it" philosophy.

When I think about it, I don't feel like the same confident, self-assured, strong, independent woman I used to feel like. It took a while but:
* The years of trying so hard to improve the frequency and/or severity of my migraine and fibromyalgia symptoms only to have every effort fail has taken a toll.
* The years of having medical professionals and others in my life treat me like what was happening to me was either my fault, in my head or being exaggerated has taken a toll.
* All the looks of doubt or pity on the faces of people I encounter have taken a toll.
* The years of being very aware of all the ways in which people are misunderstanding and judging me have taken a toll.
* The years of beating myself up because of all the things I can't do have taken a toll.
* The years of mourning over all my lost abilities and trying to cope with all the ways these losses impact my life have taken a toll.
* The years of continued weight loss have taken a toll.
* The years of feeling vulnerable because I'm can't work have taken a toll.
* The years of brain fog, fatigue, nausea, aches, pains, sensitivities, etc. have taken a toll.
* The years of fighting so hard to just be treated with a little dignity and respect by doctors has taken a toll.
* The years of indignity and struggle have taken a toll.

When I look back on all the troubles of this past month I see everything I just listed above reflected in those experiences. Then I look at how I feel I am and I don't recognize what I see as me but rather some nervous, scared, vulnerable, unsure, weak, angry shell. I hate it. I hate the toll all of this has taken. This is not what I want for my life.

Perhaps this past month things have reached a tipping point internally. Perhaps these negative feelings have grown so out of control that the world is now responding to what I'm projecting. I feel so marginalized that I'm being marginalized, which makes me feel more marginalized. I'm not being heard or seen or taken seriously. Don't get me wrong - I'm not saying that it's my fault because professionals ALL have an obligation to treat people well and do their jobs at all times even though in reality many don't. BUT, I do think it's possible the people around me were choosing to be lazy, dishonest or uninterested because of the energy I was projecting - at least in some of the cases.

I can't be sure but, if nothing else, the troubles of this past month did inspire this close examination of how I feel about me. The good news is that I really do believe this is something I can change. It won't be easy and will likely take a long time but I can't let this go on. Here and now, I've decided to start myself down a different path.

Whimsy Wednesday

A fun Halloween bit from my favorite french cat, Henri.
Have a great day!

Halloween Is For The Healthy

I've always had a love/hate relationship with Halloween.

As a kid it was fun to dress up and get a big bag of candy but there was always one big problem - we lived in Minnesota. Even if the temps were tolerable during the day, by the time the sun went down it was bitter cold and often raining, sleeting or snowing. I can remember my mom making me wear my winter coat every year. While that was obviously the right thing to do, it always made the costume feel irrelevant. Between the freezing cold temps and my discomfort with the strange adults behind every door commenting on our costumes, the act of trick-or-treating quickly started to feel like a chore. Totally worth the big bag of candy but a chore none-the-less.

I was actually a little relieved when I outgrew the whole thing. Perfectly content to spend my teenage years eating some of the candy my parents bought to hand out to the neighborhood kids. We always had much more candy than we did kids coming by.

In collage Halloween became truly fun. I rediscovered the joy of getting dressed up and doing something fun with make-up. I loved gathering with a bunch of peers, laughing and dancing in our costumes. It was a great excuse to step outside our everyday norms and have a totally silly, wild time. The only tricky part was getting up for class or work the next morning.

These days I don't really do anything for Halloween. Even if I had the energy to pull together a costume and do a bunch of make-up, I certainly wouldn't have any left over for an actual party. Even though my healthy 20-something self loved a good party, my chronic pain 30-something self knows I wouldn't have any fun. Everything about a Halloween party would be a migraine trigger: wearing a bunch of make-up, loud music, big crowd, sugar-filled treats, flashing lights, staying up late. Yikes!

Honestly, the only thing this chronic pain 30-something wants to do on Halloween is decorate and hand out candy (assuming I wasn't in too much pain). But that's not in the cards. I purposely don't do any strictly Halloween themed decorations outside because we don't want anyone to think they can ring our doorbell on Halloween night. Little Gypsy would probably have a nervous breakdown if kids were coming by ringing the bell every few minutes.

Some moments I find myself wishing I could still do the whole Halloween thing. Then I come to my senses and realize that Halloween is for the healthy. It's okay, I'm lucky to have those memories that I can bring to mind and re-experience at will. I may be in a different stage of life but that's not a bad thing.

I Want To Be Entertained By Commercials

Commercials - we all hate them. They are loud, obnoxious, annoying interruptions to all the programs we love watching on TV and online. Even short video clips are now attached to commercials. I know they serve some important purposes: providing revenue, informing the public about upcoming events. And they serve some less important purposes: announcing sales, helping to establish brand recognition and letting people know about new products or services. Blah, blah, blah...

When it comes down to it commercials bother me. Every time I sit down to watch a program (except all the wonderful programs on Netflix - oh how I love Netflix) I am forced to endure 18-20 minutes of commercials per hour. Often seeing the same 6 or 7 commercials repeatedly in that time frame. While I'm annoyed by the very interruption, I'm even more annoyed because most commercials are terrible; from the grating political attack ads to those over-the-top local car dealerships ads.

Every now and then a clever or funny commercials makes it into the mix. Here is a Geico ad that's running right now that spoofs horror movies:

I actually don't mind watching this. Even though I've seen it numerous times, it still makes me smile and chuckle to myself. Call me crazy but I want to be entertained by commercials. Life is hard enough. I don't want the added stress of hateful or obnoxious ads. Wouldn't it be wonderful if all the ads were light and fun like this one? Do you have a favorite?

Is It Me Or Is It Them?

This rabbit hole I've gone down extends beyonds the bottomless pit of f&*% ups with my presciption refill that I told you about earlier. Here let me start at the beginning:

I went in for a trim in an effort to maintain my hair style - a style that lead me to like my hair for the first time in many many years. Since hubby and I needed to get moving on a photo shoot for our Christmas card if we want to get it done in time (we do a rather elaborate card every year), I thought I would have her style my hair to fit our card concept after my trim. That way when I returned home we could jump right into the photo shoot. She did the cut and I noticed it was uneven so I pointed it out and she trimmed the long end and then moved on to styling it. With a lot of product, a hot curing iron and some teasing - poof - turned out pretty close to what I had imagined for the picture:

I cropped the picture so as not to give away the outfit.
I promise I am NOT naked or even dressed inappropriately.

All was right with the world - until the next morning when I washed my hair and discovered when she fixed the uneven cut originally she had actually over-corrected and now the other side was longer. This meant another trip to the salon to get it fixed. My gal only works on weekends so it would have to be fixed by someone else (probably for the best).

So I sat down and explained what had happened and showed the new person exactly where the problem was. He wet my hair and set about correcting the problem. He kept going back and forth between the two sides and cutting more and more hair. When he finished he asked me what I thought and I ran my fingers through - by now it was shorter than I had wanted and not really the same hair style. That's okay - hair grows out. What was important is that it was even - and it did feel even.

There was nobody else in the salon so he asked if he could style it and said it wouldn't cost extra so I let him. When I returned home and pulled it back in my usual stretched out fabric headband (keeps the hair off my face and doesn't put any pressure on my head) I realized it was actually still uneven. When I felt it at the salon my hair was very wet and frankly it felt even but clearly it is not.

Much shorter - especially in the back
and still uneven.

Did he not understand what I was telling him? Did he actually just give me a new style because he thought that was what I was asking for, or does this salon actually have two stylist who can't tell when hair is uneven?

Needless to say I won't be going back to this salon. I'm tempted to just go to the mall and walk around talking to stylist until I find someone who can look at my hair and identify the problem on their own. That way I know they at least have an eye for even hair. It's either that or have hubby try to even it out and just cross my fingers that the next salon and stylist I randomly choose can do a better job. 

I feel like a magnet for incompetence. I don't encounter many people in my life since I don't work but everyone on the small list of professionals I count on to perform tasks for me is screwing up in big way. The doctors, the mail order pharmacy, the dog groomer who trims Gypsy's nails and now my hair stylist. I can feel a measure of cynicism taking hold. 

I used to be such a trusting person.  Is it me?

Whimsy Wednesday

Ever wonder why we still celebrate Columbus Day? Here is a funny bit from John Oliver on that very subject. 

Have a great day!

The Pumpkin Patch Isn't for Migrainistas

I had it in my head that I wanted to go to a pumpkin patch for the past couple weeks. I thought it would be a fun way to get out and enjoy some fall weather and maybe a great place to pick up some corn stalks and bunches of dried corn on the cob. Certain that pumpkins from the patch would cost more, I had already picked up a couple cheap pumpkins on sale at Lowes.

I had wanted to go last Monday for our anniversary but we were in the middle of a long stretch of cold wet days. But it finally worked out that we had a little time on Saturday afternoon. The weather was ideal and I found a pumpkin patch about 20 miles away that looked promising online.

In my head I pictured a quiet farm where we could walk the field and see the pumpkins. Maybe a couple stands set up where you could pick up some fall stuff like the dried corn on the cob, maybe some fresh fall veggies and, of course, pay for the pumpkins.

That was NOT what this particular pumpkin patch was. It was like going to a county fair. The traffic leading into the farm was horrible, who knew this was such a big deal. We ended up parking quite far and having to walk to the actual farm area, which was packed with kids and costume clad dogs. There was funnel cake and hot dogs, a haunted house and gift shop, rows and rows of overpriced pumpkins laid out by size, hayride and tractor pulls, a live band, a playground for the kids, a maze... It was more fall festival than pumpkin patch.

Obviously, not a good place for this migrainista. We walked around for a few minutes and took a few pictures before making the long walk back to our car. Fun was not had but I learned my lesson.

I don't know if the image I have in my head of a quiet farm experience actually exists but I doubt I will want to pay another visit to a pumpkin patch in the years to come. We would have been better off going for a walk around a nice park - at least then we could have taken our dog, Gypsy, with us. Here are a couple of the pictures we took:

Projects in a Time of Chronic Pain

This time last year our house looked like this:

The walls were up but we had no roof.

I can hardly believe we've been living here for 10 months already. Over that time, we've been slowly getting more and more settled in and at some point along the way this structure has really started to feel like our home. Although, I've been a little surprised at how slowly the decorating process has gone. I guess I was overly optimistic about how long it would take me to make decisions and carry out the tasks. Maybe even underestimating just how much would need to be done.

The way I see it, this slow progress is actually a good thing. I'm loving every moment of it and think I will actually be a little sad when I'm done. Obviously I'll be happy to have it done but I will miss the doing - does that make sense? Anyway, the slow progress is also good on the budget. Not only are we stretching our purchases out over a long period of time, but I'm also taking my time searching for great pieces at great bargains. 

The Point:

So much of my life is consumed by my symptoms. Each and every moment that pulls my focus away from all that crap is a true gift. I may not be able to do much, I may struggle everyday with my health/pain, but I am still living, still moving forward and accomplishing things. Granted, I may be accomplishing at a rate much slower than healthy women my age but that doesn't really matter. My journey through this life has nothing to do with the journey of any other. 

I'm so lucky that I'm still able to do things, no matter how slowly I do them. 

Whimsy Wednesday

Hubby and I are big fans of Michigan J Frog. Hope it brings you a smile on this Wednesday.

How A Simple Medication Refill Turned Into A Disaster

I've fallen down the rabbit hole. There is no other possible explanation for what's going on.

My prescription plan is through one of these mail-order pharmacies, Optum Rx. While I can go to a retail pharmacy for short-term prescription like if I need antibiotics, all of my long-term meds have to come through the mail and it has to be a 3 month supply. Last month I called to refill my existing prescription for my rescue med (Sumatriptan). About a week later they arrived in the mail box. Well, some of them arrived - 25 pills of the 54 pills that were prescribed.

First of all, 25 is not divisible by 3. There is no math that allows for a 3 month supply of pills to equal 25 pills. I was able to get them to send me 2 more pills cause they showed my plan was supposed to allow 27 for 3 months (WRONG - I have a long-term preapproval for 54) but they told me I wasn't allowed an explanation as to what happened. I'm left believing they are scamming me, holding 2 pills back and hoping I don't notice, saving them money. Second of all, why are they sending me less than half of the prescribed amount? If there is a problem, either my doctor's office or the pharmacy should have contacted me. Instead they sent the pills, told me there was nothing they could do to correct the problem for this 3 month time period and insisted I pay for them and they would help me resolve the problem for next time. Turns out all of this was wrong or a lie. Does it even matter which?

Anyway, this was the beginning of a month long battle with both Optum Rx and my doctor's office to try and resolve this problem, a battle that rages on STILL. I've talked to at least a dozen people between the two places and absolutely everyone I've talked to has told me something different. Each and every conversation has made the problem worse and more confusing, taking me deeper and deeper down the rabbit hole.

I feel like I'm speaking a different language and everyone around me is just nodding along and pretending to understand me. I'll save you all the lengthy, confusing details and just say that it is not an exaggeration when I tell you that every single aspect of this ordeal has been screwed up. Up until this past weekend I though it was only Optum Rx that was Screwing up but now I know that it is also my doctor's office.

 I'm supposed to be managing all of this but I'm the only one who doesn't have access to the actual details. I call my doctor's office and they tell me one thing. I have no way to verify what they tell me but no real reason to believe they would be lying to me. So I call Optum Rx and relay the information and they tell me that is not what their records show. So they send me back to the doctor's office or onto someone else within their company who tells me something different still. I feel like I'm seriously going mad here.

I've lost hours playing this maddening back and forth game with them. Remember, all I was trying to do was refill an existing prescription that was previously correct. How the hell did it get this messed up!?!?!?!?!?!

I'm so angry. I don't deserve to be treated like this. Nobody does. Not only have they stolen a tremendous amount of time and energy from me but there has been a mental and emotional cost as well. Living with chronic pain is hard enough, the last thing I need is this level of bullshit and extreme incompetence. I've lost all faith in both Optum Rx and my doctor (and her employees). If they can't handle something as simple as a medication refill how can I trust them with anything.

At this point everything is on hold until I can get in to see the doctor on the 21st. I'll have to spend an hour on the road and pay my co-pay to resolve the clusterf*$% that this refill has turned into. Everything about this is wrong. None of this would have happened if I was allowed to go to a retail pharmacy.

Missing A Great Opportunity Because of Chronic Migraines

I grew up in an unusual little place called Rochester in SE Minnesota. When people think Minnesota they usually think of Minneapolis and St. Paul - the twin cities as it is frequently referred to. Those who have heard of Rochester probably only know about it because it is the home of the Mayo Clinic. In fact, if not for the Mayo Clinic, Rochester would be nothing more than a small farming community just like everything else surrounding it.

I love this place so much, but with a population around 110,000 it's not the sort of place frequented by musical acts, especially back when I was young and the population was even smaller. I did manage to see Bryan Adams three times during my teenage years and that's when I realized how much better music is when performed live. No matter how good of a sound system is, there is just no comparison. Live music has a magical quality that reaches into some otherwise untouched place in our core and stirs us. Well, assuming it's good music.

Of course, I don't go to concerts anymore. My body simply can't manage the experience. The parking, walking and getting seated. The waiting for the concert to start, putting up with the opening act and then waiting again for the main event. The extremely loud volume, the flashing lights the screaming fans all around. The standing for hours and then the crush of people all trying to leave at the same time. The pulsing and ringing in the ears for days to follow... And that's if I can even pull myself together enough to go at the scheduled time of the concert. Everything about it is a migraine trigger.

As much as I love live music, the years of living with chronic migraines has made concert going sound like no fun at all. So what's the problem? Well, now I live in a bigger city, the kind of place everyone stops when they go on tour. I'm watching commercials and seeing billboards around town promoting all the wonderful musicians I would love to see perform. The list of musicians I love, who are still performing, is fairly small: Pink, The Moody Blues, Bob Seger, Fleetwood Mac, Nora Jones, The Beach Boys, Pat Metheny and I would see Bryan Adam again so long as it was acoustic. Of the 8 acts I listed, 5 have been or are scheduled to come through here in the 3 years since we moved to the area.

Knowing I have the opportunity to see these amazing artists perform and NOT being unable to go makes me sad. Many of these artists are old enough that you have to wonder how many more times they will go on tour. The opportunity to see them is fleeting and I feel like I'm missing out. Sure, I can listen to their music any time I want but it's not the same. I wish I could have the experience of seeing the musicians I love play the music I love. So much so that I actually wonder if I should just go and do it, even if the migraine price is high.

What do you think?

Whimsy Wednesday

Okay, I'm totally obsessed with Henri the tormented cat. In this clip he is forced to endure a cat sitter. 

Have a great day!

Some Simple Fall Decor

The start of October means I can finally put up all my fall decorations. I say - all my fall decorations - as if I have a whole bunch. Truthfully I only have a small plastic tub with a few things. Now that we have settled into our home I am ready to slowly start expanding my collection. 

I absolutely love this time of year and so I thought I would share the little things I've done this year to bring fall into our living space.

By the front door I've added these scarecrows to
the milkcan with sticks. You can also see the bench
I am gearing up to redo.

I just love these little scarecrows.

I also added a witch and a pumpking to
some dried grasses for the mantel.

I made candle holders out of mason jars and burlap.

I then added some small pumpkins on each side of the line of
jar candles.

Down below I added a pumpkin. Gypsy
insisted on being a part of the pictures.

A couple years ago I made this Happy Halloween sign
from an old table cloth. 

She can hardly take her eyes off it.

Gypsy loves how it turned out.

Voila!

If You Don't Have Your Health, Then What

We've all heard it said, if you don't have your health you don't have anything. Of course, those of us who don't have our health know better. See, I have a wonderful husband, a loving family, an amazing fur baby who adores me, a comfortable home, food to eat, a bed to sleep in, a computer and internet connection, indoor plumbing, a washer/dryer...the list goes on and on. I am very blessed, despite my health problems.

Life goes on even when you feel terrible and can barely move. I think it's just hard for healthy people to conceive of what it must be like to live with a chronic condition that interferes with daily life. I remember reading about a study a number of years ago that showed most people thought they wouldn't want live if they were paralyzed and confined to a wheelchair. BUT, people who were paralyzed and confined to a wheelchair were still living lives of purpose and fulfillment.

Being confronted with a challenge of this size each and every day shapes you in a way that you can't anticipate. It's ugly and it's hard but that doesn't actually devalue life. I may not be able to contribute to our family finances but I can prepare healthy, tasty meals and I can do laundry and clean. I can take care of things at home so hubby can concentrate on work. Even when I can't manage to pull a meal together, I'm still a human being and my life has value. Anyone who doesn't get that, has no place in my life.

The saying is sort of a double edged sword. On the one hand, it underscores the impact health, or lack of health, has on our lives. My lack of health dominates every day of my life, impacting every aspect of my life. It's a pretty big deal. On the other hand, it implies if you have anything going in your life then you must be healthy. In that way, it may actually feed the existing myths. All those people out there who think you must be feeling better because you are up and out of the house - looking normal.

When it comes down to it, something as complicated as health and illness can't be summed up in an adage. Come to think of it, isn't most of life too nuanced for adages? Isn't that what makes life the incredible journey that it is? Why are we constantly trying to over simplify?

Looking For Help As My Health Shifts

I feel as though my health has been shifting as of late. Physically, I'm having frequent lower back pain and increasingly more hip and knee pains. Plus I suspect that my chronic migraines have gotten worse. I'm having more long stretches of pain and overall the severity of my pain is up a little. Mentally, my brain fog has gotten more pronounced and I'm struggling to deal with it. 

I don't have a trusted PCP to sit down with and help me figure out what, if anything, I can do. I guess I could just google some folks and hope they can help but I just hate doing that. I've seen a lot of bad providers by picking them randomly but since I can't seem to find anyone who can recommend people, I don't really have much of a choice. 

How I long for the simplicity of my healthier days.

Okay, enough of that. I'm headed over to google now.

Whimsy Wednesday

I love these clever videos of Henri, the tormented French cat. I hope it brings you a smile and some cheer on this Wednesday.

Have a great day!!