Monthly Archives: January 2014

Tough Pill to Swallow

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Look at that mess of pills.  Some are shiny or brightly colored, the white ones come in different sizes.  They all go into Sean’s stomach every day.  That’s right, this is *1* day’s worth of medication.  You would think that with all these pills he’d be feeling pretty darn good every day.  I’ve seen first hand how each pill affects him, and the adverse effects when he does not take them.  I believe that (at least to some degree) they are helping him, and his doctors agree that he’s been more stable than not in the past two years.  Sean himself doesn’t want to make major changes to his medication regimen because he remembers how he felt and acted pre-medications.

2013 was a long year.  Sean had more pain than normal, experienced more periods of depression, contracted a nasty unidentified illness while in Mexico (he didn’t even drink the water) that took months of recovery, was diagnosed with gastroparesis (stomach is too slow to empty), and had more trouble generally accomplishing his goals.  We scaled way back, while still trying to participate in a few events to get ourselves engaged.  The past two months his migraines have been out of control and his pain levels over all have consistently increased.  The pain meds don’t seem to be helping the way they should.  I feel very helpless.  Tomorrow he will be seeing his doctor and I have been reviewing his daily health notes.  It’s sad to see the marked decline since October.  And scary.

I have accepted that we will have good days followed by bad days and that the cycle will continue.  I no longer panic every time he has a difficult day or a new symptom or weird behavior.  But when I see a consistent march downward, it frightens me.  Not because I fear the immediate future, but because no one knows what his health will be a year from now, or five years, or ten.  Is this a sign of what’s to come?

Last night was a particularly bad night.  Incredible pain.  Pain meds were no help.  He was up and down all night long, unsteady on his feet and needing help getting around.  He finally went to sleep around 7 AM this morning.  His poor dog was up all night, too, worrying over him and trying to let me know that his dad wasn’t feeling well.  I am praying they both sleep well tonight.


Media Links

Fort Hood Sentinel

Army takes 9 medals in cycling at DoD Warrior Games

http://www.forthoodsentinel.com/story.php?id=16081

DVIDS–Defense Video & Imagery Distribution System

Army cyclists roll their way to the podium

https://www.dvidshub.net/news/167733/army-cyclists-roll-their-way-podium#.VZWZxPlViko

Video: Cycling – U.S. Army Veteran Sean Johnson – 2015 Warrior Games

https://www.dvidshub.net/video/409423/cycling-us-army-veteran-sean-johnson-2015-warrior-games#.VZVAyPlViko

Video: 2015 Department of Defense Warrior Games WTC Version

https://www.dvidshub.net/video/409422/2015-department-defense-warrior-games-wtc-version#.VZWT6flViko

NPR

Connecticut Woman Creates Non-Profit to Help Military Caregivers

http://wnpr.org/post/connecticut-woman-creates-non-profit-help-military-caregivers#stream/0

Washington Times

Wounded Warrior Caregiving Hero: Meet Melissa Johnson

http://www.washingtontimes.com/news/2015/jun/8/wounded-warrior-caregiving-hero-meet-melissa-johns/

Warrior Care Com

2014 Warrior Games–Cycling Competition

https://m.youtube.com/watch?feature=youtu.be&v=FuLefPFkdBc

DOD News

Competing at the Warrior Games

https://www.youtube.com/watch?v=CoZLGqTWfKE

Argus Leader

Warrior Games keep blind vet in touch with Army

http://www.argusleader.com/story/news/2014/09/30/games-keep-blind-vet-touch-army/16465753/

Aberdeen American News

Aberdeen man riding into history

http://www.aberdeennews.com/sports/column-aberdeen-man-riding-into-history/article_793d3b7e-2abb-5f5f-9232-b894181314e7.html

Warrior Games possible in Aberdeen veteran’s future

http://m.aberdeennews.com/news/local/warrior-games-possible-in-aberdeen-veteran-s-future/article_a36ed51a-a459-5a69-8e3c-ace5b47e3777.html?mode=jqm

Local veteran to compete in Warrior Games this fall

http://m.aberdeennews.com/news/local/local-veteran-to-compete-in-warrior-games-this-fall/article_0b08cf47-338c-513c-a734-4faf1f935137.html?mode=jqm

DVIDS–Defense Video & Imagery Distribution System

Staff Sgt. Sean Johnson – 2014 Warrior Games

http://www.dvidshub.net/video/363748/staff-sgt-sean-johnson-2014-warrior-games#.VCw52_ldWSo

‘You may be Wounded, Ill or Injured but You’re not Defeated,’ tandem cyclist says at US Army Warrior Trials
http://www.dvidshub.net/news/133430/you-may-wounded-ill-injured-but-youre-not-defeated-tandem-cyclist-says-us-army-warrior-trials#.U-qb4vldWSr

Vision impairment won’t stop wounded veteran at Warrior Games Trials
http://www.dvidshub.net/news/133094/vision-impairment-wont-stop-wounded-veteran-warrior-games-trials#.U-qbbfldWSr

Rapid City Journal

Injury gives snowboarder new purpose

http://rapidcityjournal.com/news/local/injury-gives-snowboarder-new-purpose/article_365ea25a-8777-5e94-aa2f-325bfd93641b.html

JOHNSON: Recognizing Military and Veterans Caregiver Month

http://rapidcityjournal.com/news/local/communities/sturgis/johnson-recognizing-military-and-veterans-caregiver-month/article_5470745f-95c8-5b82-bb65-79706c4cee6b.html

The Daily Plainsman

Spirit of Dakota announces nominees

http://www.plainsman.com/v2_news_articles.php?heading=0&story_id=24185&page=75

Finding help at home: Melissa came home, to help Sean come back home

http://www.plainsman.com/v2_news_articles.php?heading=0&page=72&story_id=22598

Aberdeen American News

Aberdeen woman selected for Elizabeth Dole Fellows program

http://www.aberdeennews.com/news/local/aberdeen-woman-selected-for-elizabeth-dole-fellows-program/article_a83bd1db-ad68-570a-92fc-94fec5be9aee.html?_dc=650225048884.7494

Local veterans protest moving county services

http://m.aberdeennews.com/news/local/veterans-protest-moving-county-services/article_383bab94-9353-516e-8ac4-1063a85f1ac3.html?mode=jqm

KDLT News

Purple Heart Recipient Has Home Remodeled

http://www.kdlt.com/index.php?option=com_content&task=view&id=29146&Itemid=57

Soldiers Magazine

The Depths of Love:  Chronicling the Journey from Army Spouse to Caregiver

Story by:  Elizabeth M. Collins, Soldiers Live

http://soldiers.dodlive.mil/2013/11/the-depths-of-love-chronicling-the-journey-from-army-spouse-to-caregiver/

Bonus Blog by Brannan Vines:  What I Wish I’d Known When I Started Life as a Caregiver

http://soldiers.dodlive.mil/2013/11/what-i-wish-id-known-when-i-started-life-as-a-caregiver/

To The Point

The Soldiers Who Are Making it Home

with host Warren Olney on  KCRW Radio

On Memorial Day, Americans honor those who have died serving their country, but what about those who’ve survived? The wars in Iraq and Afghanistan have the lowest casualty rates of all American conflicts. More than 95% of the wounded are coming home. Many have survived injuries that were deadly in previous wars, but they’ve been left with life-long conditions requiring high-tech medical care. Can the Veterans’ Administration cope with unexpected numbers and very high costs? What about loved ones who’ve become caregivers full time?

http://www.kcrw.com/news/programs/tp/tp130527the_soldiers_who_are

CBS News

Story by: Michelle Miller

Caregivers of US Veterans Bear Scars of War

http://www.cbsnews.com/news/caregivers-of-us-veterans-bear-scars-of-war/

Treating Family Members Suffering from PTSD

http://www.cbsnews.com/videos/treating-family-members-suffering-from-ptsd/

Military.com

Story by: Heather Sweeney and Ward Carroll

Challenges Remain in Warrior Transition Units

http://www.military.com/daily-news/2012/10/24/challenges-remain-in-warrior-transition-units.html

Aberdeen American News

Group working to modify disabled vet’s home in Aberdeen

http://articles.aberdeennews.com/2012-09-26/news/34087491_1_aberdeen-fire-and-rescue-452nd-ordnance-jdh-construction

Six years after injury, Aberdeen soldier awarded Purple Heart

http://articles.aberdeennews.com/2012-02-11/news/31053672_1_aberdeen-soldier-mortar-purple-heart-medal

The Daily Plainsman

Local family joins nationwide campaign:  Love letters tell stories of life after combat

http://www.plainsman.com/v2_news_articles.php?heading=0&story_id=14711&

Nextgov.com

Poorly Networked Systems Leave Vets on Their Own When Seeking Care

Story by:  Bob Brewin

http://www.nextgov.com/health/2010/01/poorly-networked-systems-leave-vets-on-their-own-when-seeking-care/45778


Instant Replay

I was asked recently if it was hard to keep up with a blog…my answer was no, not if you only write one post a year 😦  Oh my goodness I’ve been slacking. I’m going to post highlights and a couple newsy pieces from the past year and call it good.

1. Cancun, Mexico

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2. Phase 1 of the RAND study on Military Caregivers was released http://elizabethdolefoundation.org/wp-content/uploads/2013/03/RAND-RR-244-Embargoed-Full-Report.pdf

3. Bike Camp in Colorado

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4. In May 2013, Sean traveled to England with other members of the Blinded Veterans Association as part of Project Gemini for an educational exchange to share knowledge, insights, and friendship with their British comrades. Project Gemini is a joint effort of Blind Veterans UK of London, England, and the BVA. Melissa tagged along and spent the week touring London and Edinburgh, Scotland with her good friend Lou.

http://www.bva.org/news/?p=506

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5. In June Sean became the Commander of VFW Post 17.

6. Horses for Heroes Challenge Aspen C.A.M.O.

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7. Operation Opening Doors home remodel was completed in August.  The main floor is completely handicap-accessible with an enlarged bathroom (including walk-in shower) and new kitchen.

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Governor and Mrs. Daugaard attended our open house

Governor and Mrs. Daugaard attended our open house

8. Melissa attended The Daily Beast’s Hero Summit in DC to watch her dear friend and mentor (and boss) speak about Families on the Frontlines.  Watch it here: http://www.youtube.com/watch?v=SMvmYGCE2s0

Brannan Vines, Senator Elizabeth Dole, and Melissa

Brannan Vines, Senator Elizabeth Dole, and Melissa

9. Melissa had the opportunity to speak before several groups this year including the South Dakota American Legion Auxiliary, SD RehabACTion State Conference, the Sioux Falls VA Family Caregivers Month Event, and a Veterans Day presentation at the South Dakota School for the Blind and Visually Impaired.

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10. Sean went on his annual David Feherty IED pheasant hunt with Sons of Southfork.

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11. Melissa attended the 2013 National Summit at the Rosalynn Carter Institute for Caregiving with friends and coworkers Steffanie and Brannan.

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12. Sean’s tandem bike *finally* arrived!!  Now if we only had decent weather outside so he could ride.

Medical retirement update:  In January 2013 we were informed that Sean’s records had not yet been received at Ft. McCoy (shipped from Ft. Riley in June 2012).  The records were located in February 2013 and sent to Ft. Carson.  The army required Sean to undergo multiple physical and mental health examinations (because all those he had done previously had expired).  The final evaluation was completed in May 2013.  Records were sent to the Physical Evaluation Board (PEB) in June.  In December 2013 we received what should be the final stack of paperwork to review and sign.  Fingers crossed he should be medically retired by the end of January!  (Yes, I’m counting my chickens…)