Military Support Cause Marketing

Getting involved with the military and our veteran community can be a great experience for you both personally and professionally.

Cause Marketing is an important way to show your pride in our nation and also its servicemen and women.

I have planned various Military Appreciation Events (check out my Patriotic Tribute Events) and attend many military support organization or industry association events looking for businesses that will show their appreciation and may even provide Military Discounts and Services.
We feature these businesses at events in the community and work with schools (JROTC)  and recruiters and well as corporations in the Department of Defense as well as the Modeling and Simulation Industry to provide a rewarding and appreciative event.

Our Patriotic Tribute events (community and social) showcase previous large and small gatherings that were held in East Orlando, Florida.. 

The Facebook Page is :Patriotic Tribute USA

Museum of Military History:  Commander’s Call event details and updates on FacebookCentral Florida Navy League – Luncheon (meets 2nd Wednesday of every month)
AAAA – Froggers (meets 2nd Friday of every month)
Central Florida Marine Corps Foundation – Social (meets 3rd Friday of every month)
Semper Fidelis of America
Simulation Education/STEM – NCS http://www.simulationinformation.com/education
Ladies Auxiliary #4287– meets 3rd Monday of every month – http://www.vfwpost4287.org/
WID – Programs Chair, Board of Directors
Our Monthly Event (meets every last Tuesday of every month) click here
Women of the Moose (joined to spend time with my military friends)

If you want to make donations to our deployed servicemen and women, please review the list below:

Troop Supply List

Learn how you can get involved and support our US Military.

Colin's Condition - NIH Discharge

NIH discharge

Journal entry by Laura Benson — Jul 9, 2018

Colin was discharged from NIH tonight 

NIH admitted Colin for a specific autoimmune protocol.
He was monitored closely from May 29 through tonight (July 9) inpatient and finally discharged back to Walter Reed. He will continue to return to NIH as an outpatient three days/week.  Thankfully NIH is directly across the street from Walter Reed.  
Although he is considered an outpatient, we will be spending many days at NIH -  transporting him back and forth from the Navy base to the NIH campus.

We spent the entire first half of this year looking for other solutions or answers to "What is wrong with Colin?"  We even took him twice to Mayo Clinic in Rochester, MN for several weeks at a time.
Sadly, there were no answers, no prognosis and not even a diagnosis.  The only conclusion is that the medicine he is currently on is causing too many dangerous side effects, and unfortunately they aren't helping control his condition any longer. 
He has been constantly waxing and waning - but never healed or even managed.  He has had several relapses and hospitals stays.  And, every day is pain and discomfort for him. 

 

  
The NIH doctors had planned to taper the immunesuppressive drugs that he has been on for the past 1 1/2 years and replace them with a new experimental drug.  
The drug itself is not experimental, but using it for this purpose is experimental.  
To be clear - this drug is prescribed and used on other types of conditions, but not on someone with DRESS syndrome, Drug Hypersensitivity or the type of immune condition that has manifested in Colin. 

 

The goal during his stay at NIH was to get him off some of the meds through a slow taper.

NIH added a new drug: Tofacitinib to target his jak/stat pathway. 
They also added an antiviral medication, valganciclovir, for his HHV6 reactivation.  

So basically, add the new drugs and taper off the others.
So far - some of the taper was successful, while others were not.     

Today we were told by one of his doctors that this new drug may not cure him, but we were reminded and do understand that he is helping to further science and research and any others that may suffer similar conditions.  

Colin's Condition - Independence Day 2018

Independence Day (4th of July 2018)

Journal entry by Laura Benson — Jul 4, 2018

This year has flown by.  We have spent so much time living in and out of hotels, hospitals and traveling from Bethesda, MD to Rochester, MN to Orlando, FL.

Colin has currently been inpatient at NIH since May 29, 2018.  He agreed to try a new medication that could potentially help with his JAK/STAT pathway.  Additionally, his condition continues to wax and wane and with that he also has also reactivated the HHV6 Virus.  So, the doctors at NIH are trying to control his inflammatory response and his virus with two additional drugs:  Tofacitinib and Ganciclovir

The goal is to add the Tofacitinib and taper off the other immune suppressing medications that he has been on (prednisone, cyclosporine and cell cept).  Long term use of these medications have been causing secondary problems for Colin (dangerously high blood pressure, Cushing Syndrome, glaucoma, acute kidney injury and many others).  The less medication he is on, the better!  Side effects are nasty and they do cause a lot of damage.  

The taper began, first with cyclosporine.  Doctors make adjustments week by week, so we have to be very patient.  Colin has to have his blood drawn and body examined daily.  We have been trying other new things as well, such as milk baths.  (He uses the hospital walk-in tub/bath and I pour an entire gallon of milk into the bath water with a solution of bleach).  
He was finally completely off cyclosporine on Sunday, but then the doctors didn't like the lab results and were not comfortable seeing his rash breaking through, so he was placed back on cyclosporine. 

So the new plan would be to try to taper his steroids.  
This can be tricky, because his body needs to wake up adrenal glands. In the beginning, Colin was on 125 mg of prednisone!!!  He was on 100 mg then 80 mg and stayed around 60 mg for several months.  It has taken well over a year +++ to get his taper down to 40 mg.  He keeps going up and down, from 80 to 100 then back to 80 and then slower on the way down. And even slower as they get lower.  It's a roller coaster for his body and his health.  He has been down on 40 mg for months now.  The doctors have attempted to go lower, but it wasn't successful. Meaning, his body can't make up the difference.  Trying to taper Colin off steroids always causes another hospitalization - because his own immune system can't wake up.  When this happens, doctors add more steroids back on and go back up, which makes the steroid taper process take even longer.

Honestly, we were told back in Spring of 2017 when this all began that a drug reaction would last 2- 8 weeks and that he would be off steroids in about six months - so much for that!!

He has been struggling with the steroid taper the entire time.  And his condition has caused multiple hospitalizations and the loss of so much skin.  So much damage to his body.  It's unimaginable.  And unceasing.  He is so very strong and patient, but it takes a lot out of him to be in constant pain and misery EVERY single day - without a break.  I have not seen Colin have one single "good day" since this all began. We do the best we can to make life worth living and enjoyable as possible - like trips to see the dogs and family in Florida.  But it's not the same when he is sick, handicapped (wheelchair bound) and has to conserve all of his energy.  It's heart breaking to watch someone you love go through this and realize there is nothing that I can do to help him.

Hopefully with the addition of Tofacitinib he can successful taper down to a lower (less damaging) maintenance dose of steroids.  And then doctors can decide which immune suppressing medicines to taper next, if possible.  

To add insult to injury, Colin's 23 year dedicated and highly successful career in the United States Navy is sadly coming to an end for him. (Too soon and NOT the way he wanted to retire; not his choice and not fair to him.)  
The Navy began his retirement process last month.  We were told to move our Florida home into storage and tie up any loose ends, so that we can focus on his Medical Review Board/Retirement while living in the Wounded Warrior Barracks (building 62 as we call it).  

Thank God that NIH has allowed Colin to remain in their hospital for over a month for supervision.  (He was admitted on May 29)  It's comforting to know that doctors have been carefully looking his body over -literally inside and out, every single day for over a month straight.

We can also thank God that He placed us in Washington DC in 2016, when Colin was given orders to DLI (Language School).  Thank God this serious illness and unknown medical condition did not happen while we were living in Northern Germany. 

We pray every day for Colin's health and strength to keep fighting through this and we thank God for putting him so close to Walter Reed National National Military Medical Center and National Institutes of Health, which are literally across the street from each other. 

We are celebrating the 4th of July in the hospital at NIH.  

Thinking of all of you and hoping you have a safe holiday. 

Next Step Service Dogs

Next Step Service Dogs trains dogs to be a psychiatric service dogs.

Standard service dog tasks include getting help, turning on lights, balance support, and retrieval [to name a few].

Read More: https://www.nextstepservicedogs.org/about/

ADDITIONAL CONTACT INFO

http://www.nextstepservicedogs.org

nextstepservicedogs

MORE INFO

About

Bringing peace to the lives of our heroes by providing service dogs for veterans and first responders with PTSD and TBI.
Find us on Instagram and Pinterest

General Information

support@nextstepservicedogs.org

Next Step West Coast Chapter
Ph 760-438-9190
FAX 888-867-1690

PTSD Awareness Month

June Is PTSD Awareness Month

The VA's crisis helpline is 800-273-8255, or via text at 838255.

You don't have to be teetering on the edge to contact them. Sometimes it just helps to talk to somebody who has been in a similar situation and gotten through it, you can get through it too, sometimes all it takes is talking about it. 

And if you do think you have PTSD, don't believe all the horror stories about the bad treatment at the VA and let that keep you from contacting them for help. There are a lot more success stories than bad ones.

You can check out our PTSD section for a bunch of articles that can help too.https://www.military.com/benefits/veterans-health-care/ptsd

The VA's National Center for PTSD has more available, click here

June is PTSD Awareness Month. Help raise awareness of PTSD and its effective treatments by sharing this post! To discover ways to connect and share, visit the National Center for PTSD website: www.ptsd.va.gov. Promotional materials are available to help you distribute information to your community or organize an event. www.ptsd.va.gov/about/ptsd-awareness/index.asp

More information:

https://www.ptsd.va.gov/about/ptsd-awareness/ptsd_awareness_month.asp 

Colin's Condition - NIH Trials inpatient

Adding the experimental medication as well as the antiviral

Journal entry by Laura Benson — Jun 9, 2018

Colin has had a rough week.  Last weekend NIH gave Colin water pills to remove fluid around his heart.  He lost a lot of water and became severely dehydrated.  This took his very high blood pressure and brought it far too low.  Since he already has kidney injury from last year at the onset of his condition, this only made matters worse.  So the team of doctors spent the entire week getting his kidneys functioning and his blood pressure balanced with IV Fluids and medications (although blood pressure is slightly stable, it is still high).  Only then were they willing to finally let him take his experimental medication:  Tofacitinib.

He took his first dose of Tofacitinib on Thursday.  He had to wait ten days!!
Doctors continue to monitor his creatinine levels and also are attempting to taper his cyclosporine dose, slightly.  (Cyclosporine is known for causing high blood pressure and kidney problems.  Colin has been on it for over 12 months).   
He is now taking Tofacitinib twice a day.

Today the doctors introduced Ganciclovir, an antiviral. It is used to treat infections caused by viruses.  
Colin has a reactivation of HHV6, which is something we all had when we were babies.  There are known medical studies following patients that have a reactivation of HHV6 with drug hypersensitivity (DIHS).  Colin has been tested for HHV6 many times this last year.  Occasionally it shows up in blood tests, but has not been consistent.  So, the NIH doctors would like to treat it while he is being closely monitored.  He continues to donate his blood for testing that is used in this type of research.  

All of the medicine that Colin has been taking for the past year are immune suppressants (Prednisone, Cyclosporine and CellCept and now Tofacitinib). All of the strong medications that he takes to attempt to control his flairs and relapses have a lot of side effects that are very concerning.  And if you've been following him - you know that he has had many break through flairs and relapses, which is disheartening.  As you can imagine, he is getting weak and tired from fighting whatever "this" is.  And as many of you have experienced yourselves, all of the medicine that Colin takes causes side effects that also must be treated. 

Thank you all for your prayers because we know God is listening. 

We have had the best doctors examine and treat Colin.  Walter Reed, John's Hopkins Center, Washington Hospital Center, Mayo Clinic and NIH and many others have been consulted from various other hospitals.  They genuinely care and are working hard at learning more about Colin's condition and why his own immune system won't kick in and fight for him.  

Colin's Condition - June 1, 2017

June 1st

Journal entry by Colin and Laura Benson — Jun 1, 2017

Colin started the day with more energy and a very positive attitude!
Last nights IVIG took over 7 1/2 hours!

He had a busy day-all day long, non stop.
Doctors, physical therapy, more ointment and wrapping him up like a mummy and a loud annoying roommate as well as his last round of IVIg tonight. 

We got a call about coordinating housing for him after he is discharged, but that won't be for at least another week to ten days. I will share that when we have worked out the details. (Housing him in the Wounded Warrior Barracks at Walter Reed National Medical Military center).

The doctors shared their conference feedback. 

Many doctors reviewed Colin's case and the feedback is:
The bad news is they still don't know what is wrong with him!!!

According to his doctor today: The good news is that they know many things that are not wrong with him. (She said that to make light of all of the many hundreds of tests and labs he has had the past two months!)

They seriously don't know what else to do other than "wait and see" and respond to his flair ups when he cycles and treat him symptomatically. 

He may have a case of prolonged DRESS with overlapping TEN. 

I hate leaving Colin at the hospital at night. I stayed most nights with him at Walter Reed 
While he is undergoing this treatment he needs to be resting. Meanwhile his roommate gets hauled away for his behavior and another one moved in and is immediately put in restraints. He is definitely in an urban hospital. 

I pray he is safe and stays strong and positive despite his circumstances and his environment. 

My parents drove all the way from Florida to Washington DC today and arrived around 1900. I will post a photo of them below. They were so glad to see Colin with their own eyes. 

And for me - it was so wonderful to hug my parents!