March Headache and Migraine Disease Blog Carnival

Life Hacks: Tweaking Work and Life to Deal with Migraines

Great entries this month on how we live and cope with headache disorders.  Diana Lee has helped me gather the entries this month, and had a great suggestion for an addition.  Nancy Bonk has asked for a call to action from migraineurs concerning the problems we have getting taken seriously by healthcare professionals.  Please read her post Migraines, Stigma, Suicide - Stop! and give this subject serious thought.

Nancy has another great post This is How Migraines Have Tweaked My Life with some hints on how she makes it through each day with debilitating headaches.

A taste of South America spices up Betsy's migraine journey, described in La Migrana! at MigraineJourney.  Glad there are those of us who are able to have adventures in different countries!  A beautiful photo makes it look warm and sunshiney.  Sigh.

Teri Roberts at Putting Our Heads Together has some great info in Migraine Life Hacks: Dealing With Migraines. Terri has some great tips on managing migraine disease and triggers with some extra tips on using technology to leverage your day and some links to extra resources. 

While Tweaking Life for Migraines Migrainista has learned to be more flexible and innovative in dealing with migraines and their effect on her life.  Kelly at Fly with Hope has a great post about how chronic illness and migraines have changed relationships in her life.  I think we can all relate to Friendships Within and Outside of the Chronic Illness Community.

Kathy from Australia gives some great tips on how she is able to get around town using her trusty backpack!  I'm thinking I may have to invest in a sturdy backpack and a barometer myself after reading her post Sydney by Backpack and Barometer.  Gretchen at There Be Migraines Here has some great analogies in her Life Hacks post.  I will never be able to shake up a Coke again without thinking of this post and my head!

Diana Lee at Somebody Heal Me lets us know some easy tricks about looking good in her post Simplify Life with Migraines & Chronic Illness: Beauty.  Some very practical ideas and some recommended products that she has found helpful. 

More Than a Little Tweaking Required is the entry from Sue at InnerDorothy.  Sue lets us know how she manages her pain on a daily basis while still maintaining an active work life.  I love her comment "I relegate pain to a low place on my day to day priorities of living"  That's putting pain in its place!!!

I write a little about tweaking life and work environments in my post Taming Headaches.  Hope you find something useful in my entry!

This has been a great bunch of posts, and a great response to Diana Lee's blog carnival.  I found something new to me that I could use in every post.  Join Diana Lee in April for the next carnival!

Communication

Conversation Started

I let one of my bosses know how disappointed I am in my current ability to work and contribute.  I said I committed myself to seeing the business through the stream of installations and conversions last year, I am just very unsure how I can do that again this year.   I am not sure yet what I am going to decide, but I know that The Legs are my major obstacle right now.

I hope to talk with them next week, and see what they want to do and let them know what my limits are and if that is still acceptable for them for work.  I have thoroughly enjoyed my work with them.  I love their company, I love what I do - or rather did since I have cut back this fall.  I believe in their vision and feel that it is just going to take a little tip forward and things are going to take off even better than last year, which was a very good year for them for new business.  If my bosses think that we need to make a parting of the ways I will be sad, but they have been more than fair to me. 

I just can't in good conscious continue to be so unreliable and so illness prone as an employee.  I have ended up ill or unable to walk after the last two trips and have missed a couple of weeks of work each time.  I ended up in the hospital last summer probably as a cumulation of not taking care of The Belly properly while doing installs.  Not only do I feel bad about missing work, but it costs me money and it costs my employers money especially with insurance premiums and for lost man hours.  I hate that I have just gone from one illness to another the last few years; I had gotten a clean bill of health before I started this job nine years ago.

Incapacitated by this or that during the last seven years I have been injured financially also.  Co-pays, deductibles, out of network deductibles, travel to specialists, medication costs, missed wages have worked together to ruin whatever little credit I had.  I am lucky because my home has no mortgage, but even paying real estate taxes has been a struggle.   Not only do I have my own financial medical issues, I have my mother's also, and have been helping my brother pay for his prescriptions. 

I am terribly whiney tonight.  The lower dose of neurontin is not helping The Legs very much, and I am reluctant to keep supplementing with pain meds.   Feeling tired and woozy, think I will sign off and go to sleep!

Life's Not a Teddy Bear Picnic

Using up one of my allotted Self Pity Days

Very sad tonight.  Not sure if it is the pain, the futility, the medication, the fatigue, the hunger, or the insensitivity of my family that is making me use up one of my precious self pity days.  Could it be a combination of all?  Yes indeed it could.

I am tired to the limp rag stage of fatigue. Didn't work today because of pain and medication for pain.  I cannot sleep due to the pain (even with oxycontin 2x daily) and am contemplating just not taking any pain medication tomorrow so I can work.  My bosses have been wonderful, but I feel I am letting them down too.  I am going to have to shrug off this mantel of guilt and just do what I am able to do, and ignore the rest.  I guess I will see how far I can push myself with no food, very little liquids and no pain medication.

I was selfishly counting on a little concern on how I was doing when I got home, rather than insistance on instant return to shuttle driver and provider of all needs.  My mother tries, but she is getting to the age where I am truthfully more concerned about her wellbeing when I am gone.   Just feeling the loneliness and isolation of chronic illness through a cloud of pain, nausea, and fatigue.

My bosses and friends have been great, and I am sure my family was much more supportive than I am remembering in the deep darkness of the night.  Just worried where the future is going to take me.  I was much sicker much longer this time, and was released without really having my issues resolved, mostly due to the fact that all the consulting physicians were on vacation during the 4th holiday and I needed to get back home and back to work.  Going to work tomorrow and Friday and just take it as it comes. 

Was told I would need to go back to Dr. Gnome in St. Louis again.  I can't even face the thought of the drive for the appointment and then the logistics if anything had to be done.  Too much to do this summer for work, no time to take for non emergency treatment.  Ah well, I will go be sad for a while longer, as my self pity day is not done yet, even though my family would think I was being self indulgent and selfish.  Yes I am, and I have given myself permission to be so today.

The teddy bear picnic song and dreams were a theme throughout my hospitalization this time, maybe because I was so hungry!  I kept having drugged dreams about the teddy bear picnic, maybe wishing I could go out in the woods in disguise and have a picnic with the teddy bears!

Ruler of all Things Project

Wearing My Crown Proudly

Put on my Project Manager crown this week, whipping up a couple of project plans so we can coordinate with a project partner.  Feel like I'm in one of those old Imperial Margarine ads -duh duh duh daaaa - fit for a project manager/King!   Formal project management, which I have done in the past, is really not needed in a firm as small as the one I work for, but when working with other firms (especially ones that are being utlized by a mutual client for project management) I can brush off the old software and pull a project together.  I just pray they don't want me to actually update the durn things.

On the road again this week, and probably all of next week. Big Sigh. All of a sudden way too many things to get done in the time it takes to do them.  And of course deadlines changing daily, sometimes more than once a day, with all dependent deadlines shifting and changing too!  Keeps life interesting that's for sure!  The new trainer is learning so quickly it is scary - in a good way.  Can't believe our luck in hiring her!

I turned in a request for unpaid time off this week for the CT scan, and my boss, The Big Guy, came over and said quit filling these out, don't worry about it - you're covered.  Now coming from an accounting background and having been over payroll and benefits before, I appreciate this - but I'll keep filling time off requests because I like to keep my personal ledger straight.  Doing the requests makes it easier to be honest with myself about how much time I'm missing.

Renee at Gypsy Shyaluna has a great post about chronic illness and marriage/relationships.  She has some great tips and practical advice whether you are in an active relationship at the moment or not.  Her post concerning the path she took to getting a diagnosis of Chiari Malformation and the treatment for it is very interesting also!

Renee's post reminded me of a presentation about the emotional aspects of dealing with chronic illness.  This powerpoint was developed for the myositis.org website by Craig Travis, PhD, of Mount Carmel Famly Medicine (Director of Behavioral Sciences).  He states that attitude about illness is something you can control when the illness itself is not something you can control.  This is a struggle for me somedays because truthfully being chronically ill stinks.  I try very hard to maintain an optimistic outlook, but sometimes I just get overwhelmed.

I think I need to come up with some type of mechanism to help me make decisions when the pain gets really bad, because I make stupid decisions like waiting too long to get medical assistance because I can't think clearly.  I know if I have a decision making process already lined out I can just turn to that and follow the flow chart. I can use the part of my brain that is still functioning to get to the right decision, instead of just going into pain overload mode and stalling out.  I need to get with my PCP about rescue medication so I can have that as part of the plan.

P.S.  The link to the powerpoint presentation was provided by an RN who maintained a discussion group about pancreatitis and sphincter of Oddi disfunction.  Thank you Michelle!