Colin's Condition - October 7, 2019

October 7,2019

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.

They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  

There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  

So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to pray for God to watch over Colin and to heal him.

Today's Update:
Colin had an appointment with National Institutes of Health (NIH) to review the immune protocol and the results so far of this experimental medication that he is taking.
He has had testing twice on his adrenal function to see if it is safe to take him completely off Prednisone and switch to Hydrocortisone. 
At that time, he was not yet ready.

So at a later visit (August 6, 2019) he took the test again.  
He "barely" showed within range (at the very bottom line).

We were instructed to continue with his Prednisone (steroids) and then switch over to Hydrocortisone when he has plenty of down time to rest and work through it.

He is a also a patient at our local VA (Lake Nona).  However, he is being followed closely by NIH.  

Today he is on: (Listing immune suppression medicine only)

ZERO mg of Prednisone!!

25 mg of Hydrocortisone

10 mg of Tofacitinib

No more Prenisone!  

Predisone has caused so many problems for my husband.

He has Cushings

He has Glaucoma & Cataracts - Steroid-induced posterior subcapsular cataracts (PSCs) 
https://www.ncbi.nlm.nih.gov/pubmed/17900234
(He had the surgery, they also placed a stint into each eye)

We don't know how he will react with this change in medicine.  
At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017. 

Colin currently has many red spots all over his back and legs. He is completely exhausted, constant head aches and lots of pain in his joints all over. 

I made the mistake of bringing him along with me to a business networking event last Tuesday. That totally wiped him out for the rest of the week. He barely got out of bed.

He was able to attend one of my doctor appointments with me, which was very comforting.

On Saturday he was able to walk, just a little, through a community event. We only stayed for about thirty minutes though.


He has not gotten out of bed now from the pain and exhaustion.
My heart goes out to him, every day and forever.  This situation has been really hard on me as well.  Hard on my body - I have a lot of doctors and procedures and care now that we have left Walter Reed.  I miss my husband.  Colin has no energy, he has no strength.  We don't get to do many things together expect attend doctor appointments.

Celebrating Vegetarians in October

VEGETARIAN MONTH

I am a vegetarian.  

I have been nearly all of my life.  

I am that guest at dinner that can't find anything to eat on the menu.  I am that person that suddenly gets interrogated and questioned about my choice to not eat animal products, and then this becomes the ONLY topic discussed at dinner.  I am that person that can't eat at anyone's house.  I am that person that offends others when they ask me to try at dish that isn't vegetarian.

I am NOT that person who educates others in a gross or scary way.  Well there was this one time, that I sat my children down for the "talk."  In our house that talk was about our pets, zoos and what we eat. We all know where it comes from.  I just chose not to eat it, ever.  Honestly, I just feel so bad for the animals, so I can't do it.  I can't stand the smell of it cooking.  I hate the hype for a certain food that looks, smells and tastes like meat.  (I won't mention any names).  There is no way that I would want to pretend to eat meat.  

I once tried a burger.  It was grilled (probably by actual meat and on a grill and then had meat juices on it - ew!) and it was rubbery and hard to bite into.  Then I saw the "blood" which was later explained to me as beet juice.  I called the manager over and complained.  He explained how much meat eaters enjoy this non-meat alternative.  I said, coming from a real vegetarian, there is no way we want to eat that meat-like burger.  Honestly - it's too real.

The Following Information is provided by National Day Calendar (click here)

Vegetarian Month is an annual designation observed in October. Even if you’re a meat eater, now’s the time to give some vegetarian recipes a try! As you probably know, vegetarianism is hugely popular among the millennial crowd. However, you may NOT know that it’s been around since before recorded history. Crazy, right? It’s one of the oldest diets in the book. 

HEALTH BENEFITS 

1. A vegetarian diet is rich in antioxidants and vitamins. Lifestyles that are high in fruits, veggies, and other plant-based foods provide some of the most essential nutrients we need.
2. Eating less meat supports heart health because it helps lower inflammation, and is high in dietary fiber. Plant-based foods can also significantly lower body mass index, which also promotes a healthy heart.
3. Vegetarian diets can also help with weight loss if you keep processed carbs out along with the meat. If most of what you eat is fruits, vegetables, legumes, nuts, and seeds, it can actually be quite easy to lose weight.
4. Cutting out meat may help to reduce your risk of diabetes, according to Loma Linda University School of Public Health.
5. Finally, contrary to popular belief, you can still get plenty of protein on a vegetarian diet. If you do it right, it easily satisfies all of your nutritional needs.

HOW TO OBSERVE

Make a point to eat less meat this month. Don’t knock it ’til you try it! Make the yummiest (and prettiest) vegetarian meal you can find, and use #VegetarianMonth to post it on social media. If you don’t think you can go an entire month without it, that’s okay. Start out by trying Meatless Mondays. Do some online digging to find a few plant-based meals that you think sound tasty, and try cooking some of them up! And if you want some added incentives, here are a few things to remember. Meat is expensive; experts say vegetarians live longer, and… ice cream AND cheese pizza are vegetarian.

HISTORY

Celebrating this for an entire month stemmed from World Vegetarian Day, which was established by the North American Vegetarian Society on October 1st, 1977. But, vegetarianism itself dates back to a time before recorded history.

If you happen to fall in love with eating vegetarian this month, don’t worry… you can take it a step further for your next challenge. November 1st kicks off vegan month. Good luck!

Colin's Condition - February 13, 2019

Prednisone Step Down

Medical Information:  Prednisone / Steroids 

February 13, 2019

Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication that we hope will replace all other immune suppression medicine today, February 13, 2019.  

We were instructed to continue with his Prednisone (steroids) taper, or "step down" and his doctors put a plan together that would cover the next few tapers.

Today he is on: (Listing immune suppression medicine only)

10 mg of Prednisone 

75 mg of Cyclosporine 

1000 mg of Cellcept

10 mg of Tofacitinib

First the steroid will be reduced (February 14) and then we will reduce the cellcept by 500 mg off his morning dose (February 28) and then hopefully is everything is going well and he is able to continue tapering on schedule we plan to reduce the steroids down to 8 mg (March 14)

So, in tomorrow's medication I will reduced his Prednisone to 9 mg.  At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.  Unfortunately, he has suffered damage to his eyes from long term steroid use.  He has a lot of eye pain and pressure.  I give him a lot eye drops.  We also learned that he not only has glaucoma, but also has to have cataract surgery.  This explains why he is having a hard time seeing, blocked vision, headaches, pain and burning in his eyes and also seeing starbursts. 

Doctors have been attempting to slowly taper him off this high dose of steroids, cellcept and also Cyclosporine to replace with his experimental drug:  XELJANZ XR (tofacitinib) 

Here is some information about tapering slowly from Mayo Clinic

https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Medical Information: https://www.xeljanz.com

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  

There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  

So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

February Post

This February (2019) we are still living in "Tranquility Hall" otherwise known as the Wounded Warrior Barracks on NSA Bethesda at the Walter Reed National Military Medical Center.

We are really missing our family this month, so I found some family photos to share in my blog.  

First is Colin and our daughter, Cassandra at her Graduation , next is Colin and I at a Navy Ball in Orlando, FL, then Colin and I in Jacksonville, then the last photo is of our Son-in-Law, Kemsley and our Daughter, Alexandra 

Colin's Condition - January 24, 2019

Immune Suppression Step Down

Medical Information:  Cyclosporine 

January 24, 2019

Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication on January 9, 2019.  A lot of medical information was shared with us concerning his T cells and tregs (Regulatory T cell)  as well as his IgG (Immunoglobulin G).  Most of the information is too hard for us to understand completely, but we understand that doctors are tracking all of his numbers as well as his HHV-6 (Human herpesvirus 6) reactivation.

We were instructed to continue with his Prednisone (steroids) taper, or "step down" as well as try a Cyclosporine step down.

He was on 12.5 mg of Prednisone and 100 mg of Cyclosporine 
First the steroid for two weeks, and then reduce the cyclosporine by only 25 mg off his evening dose.

So, in Colin's morning the following day (January 10) I reduced his Prednisone to 10 mg.  At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.

And today, January 24, 2019 I will only give him 25 mg in his evening dose.  He will now take 50 mg in the morning and 25 mg in the evening.
Doctors want to do slow tapers, so his body can adjust and learn to regulate on its own.

The reason for choosing to reduce the evening dose vs. the morning dose is that he takes a lot of blood pressure medication as well, and one of the prescriptions is doubled in the morning. So we will match that with cyclosporine.  Especially since Cyclosporine is a contributing factor in his high blood pressure. (Drug-induced causes of secondary hypertension) 

Doctors have been attempting to slowly taper him off this high dose of steroids, cellcept and also Cyclosporine to replace with his experimental drug:  XELJANZ XR (tofacitinib) 

Here is some information about tapering slowly from Mayo Clinic
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923



Medical Information: https://www.xeljanz.com

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  
There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  
So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

Colin's Condition - January 10, 2019

Prednisone Step Down

Medical Information:  Prednisone / Steroids 

January 9, 2019

Today we are back" home" living in the wounded warrior barracks (Tranquility Hall) at Walter Reed National Military Medical Center in Bethesda, MD

Colin had his appointment with National Institutes of Health (NIH) to review the immune protocol and experimental medication yesterday.  A lot of medical information was shared with us concerning his T cells and tregs (Regulatory T cell)  as well as his IgG (Immunoglobulin G).  Most of the information is too hard for us to understand completely, but we understand that doctors are tracking all of his numbers as well as his HHV-6 (Human herpesvirus 6) reactivation.

We were instructed to continue with his Prednisone (steroids) taper, or "step down" 

So, in Colin's morning dose today I reduced his Prednisone to 10 mg.  At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.

He is down to 10 mg of steroids today, and we expect his body to react (as it always does with each taper).  His body becomes (even more) weaker and struggles to recover.  Sometimes his skin erupts or gets very thick and actually comes off.  (It's painful for him and frightening for me).  
10 mg may not sound like much medication, but he has been dependent on it for so long that it's extremely difficult for his body to make up the difference and recover when it's reduced.

Doctors have been attempting to slowly taper him off this high dose of steroids, but his body doesn't react well to changes in medication.  

Here is some information about tapering slowly from Mayo Clinic
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

This past year doctors have been tapering him off many of his immune suppressants in an attempt to replace them all with the experimental dose and use of  XELJANZ XR (tofacitinib).

Medical Information: https://www.xeljanz.com

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  
There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  
So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

Happy New Year 2019

Texas work and possible house hunting

The Benson Ohana will be heading to Texas in a couple of weeks....

Checking out the area for work (JAFRA, Game Plan Media Events, Game Plan Local) and also to possibly move here when Colin retires.
Starting and ending in Dallas (traveling through Waco, Austin, San Antonio, Houston and back to Dallas)

ISO- Looking for friends and family and recommendations in Dallas, Waco, San Antonio and Houston, Texas!

In a few short weeks I will be in Dallas for a JAFRA conference.

Jan 16-19 staying in the Dallas area
Laura Benson's Jafra Page

Then, Colin will be joining me afterwards, so we can explore the area looking for a possible new home after his retirement.

We will be in the area for another week checking out various local areas and neighborhoods.

While traveling around the cities in the area I will be continuing to work with Game Plan Media Events and Game Plan Local as well as building up some new pages that I just started for local area in these cities:

We will leave Dallas Dallas Local and head to Waco Waco Local and then Austin Austin Local followed by San Antonio San Antonio Local and last, Houston Houston Local

When we are finished we will make our way back up to Dallas around the 27th

Contact us with any advice for areas to check out and visit or if you would like a visit!! ❤️