Discouraged or Thankful? That is the Question.

It's been one of those days.
We all have them.
Sometimes it just seems ours pound us relentlessly. It would be so easy to be discouraged yet we pick up and carry on.  We muster up enough gusto and stamina to get through our situations.  I am very thankful for family who help out in whatever ways they can.  Today, Mom has done laundry and dishes, cleaned around the house, and Papa came to get the kiddos for a last hooray before school. 

How did your day start?

My day began with a quick trip to the doctor to get my soft cast on my broke foot re-wrapped.  I came home to one kid still sleeping and John and the youngest were watching TV.  Soon after I came back, I heard John calling, "Amanda! Where's the bathroom? How do I get to the bathroom?"  I went to the living room and found him screening the walls, moving his head around the room in a panic.  I helped him to the bathroom as he quizzed me.  "Who's house is this? Where are we at?"

After I told him it was our house and we had lived here for over four years, he turned to our 6-year old son and asked him, "Who's house is this?" 

Gabriel told him, "It's our house, Daddy."

In almost disbelief, John chose to lay on our bed, asking "Who's room is this? Who's bed is this. Are you kidding me?"

I called mom and asked her to come over to help get the kids dressed and such.  John asked if she was coming to take us to our house. 

Matthew 6:27 NIV
Can any one of you by worrying add a single hour to your life?

How do you even respond?

You could panic.  Likely, it wouldn't do any good.  We all calmly dealt with the unusual morning we were presented with.  Our kids are terrific.  They really adapt and deal with our unique situations better than most adults would.  What would you do if your 37 year old spouse suddenly woke up disoriented to the point that he or she didn't recognize their surroundings?  Thankfully this doesn't happen often.  But, it happens.

The boys loved John, hugged him, and we tried to assure him that this was indeed our house and reorient him as best we could.

Philippians 4:6 International Standard Version

Never worry about anything. Instead, in every situation let your petitions be made known to God through prayers and requests, with thanksgiving.

 

Why choose Thankfulness?

Why not? Does it really do any good to be discouraged?  Try to focus on the positives.  These are the precise moments that make us realize that we must cherish the good times,

This week's quick trip to Universal

the good days, the good moments, the fleeting precious moments that we can experience and embrace as a family. 

For John, it is important that we do things with the kids that they can look back on and know that he tried to have good memories with them, even if he is unable to remember them.  He and I took a vacation a year and a half ago that he really doesn't remember.  Yet, I know the effort he made to make sure that we had a getaway just for us.  Our children will have memories and photos to look back on after the images are no longer in John's recollection. 

Our spontaneous trips provide an escape and a vital key to him believing that he is trying his best to show them he loves them, wants them to know that he cares, and put forth the effort when possible.

Thankfully not every day is like today.  Not every day is a cake walk.  Thankfully we have good experiences that we can cherish and we can hold onto the unconditional love that we have.  We are blessed with a great family.

Whether your family if filled with members who have special needs or just average folks, love them, cherish them, and tell them how much they mean. 

I Thessalonians 5: 15-18 NIV

Make sure that nobody pays back wrong for wrong, but always strive to do what is good for each other and for everyone else. 16. Rejoice always, 17. pray continually, 18. give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

My Amazon Subscribe and Save Deals

I've started taking advantage of my Amazon Prime account by ordering things in to my business that are more cost effective than a shopping trip.  I have done a substantial bit of research to make sure I'm getting a good deal and thought I'd pass along what I've found.  With a Prime account and a Subscribe and Save subscription you can choose the items you want and how often you want them delivered.  With 1-4 items delivered on the same order you get a 15% discount.  With 5 or more items you get a 20% discount.  You can cancel or put orders on hold at any time. 

One of the best deals I found was on 48 double rolls of toilet paper.  The cost with the 20% off was $18.10 delivered each month. That's alot of toilet paper but it is easier and more cost effective than loading two buggies each week with paper products. This way they are delivered to our door and I don't have to pay payroll costs for someone to go get them.  Now, don't get me wrong becuase I'm all about keeping money local when I can but with me having to stay at home with my husband, I'm trying to save as much as possible too. 

Items scheduled to arrive in August include (Prices subject to change and Subscription includes 20%off):

• Purex Ultra Packs Laundry Detergent
•  $6.97 or $5.58 SUBSCRIPTION
•  Bob's Red Mill Flour 4- 5 lb bags 
•  $13.91 SUBSCRIPTION (not currently in stock since I put it on my list)
•  Mr Clean Magic Eraser
• $4.97 or $3.98 SUBSCRIPTION
•  Cascade Dish Detergent Packs, 85 ct
•  $15.46 or $12.37 SUBSCRIPTION
•  Angel Soft 48 Double Rolls
•  $22.63 or $18.10 SUBSCRIPTION
•  Platex Large Gloves
•  $2.15 or $1.72 SUBSCRIPTION
•  Scott Naturals 6 large rolls paper towels
•  $9.22 or $7.38 SUBSCRIPTION
•  Lysol Disinfectant Spray, 19 oz
•  $4.88 or $3.90 SUBSCRIPTION
• Nestle Carnation Instant Dry Milk
• $10.61 or $8.49 SUBSCRIPTION
• Microwave Pork Rinds, case of 18
• $18.99 or $15.19 SUBSCRIPTION

Some of the items' regular prices are already discounted.  Remember that Amazon prices are subject to change and I suggest checking your subscriptions a few days to a week before they are scheduled to make sure you don't miss out on an out of stock item.  I'd hate to miss my 20% off if something wasn't in stock.  That's why I added smaller "filler"items that we use, just in case.  

Maybe you don't want to buy that much TP but you can always search for a smaller amount.  I just thought I'd  share my hard work with you so you could take advantage of some savings.



(Disclosure: This post may contain contain Affiliate links)

Frustrating Journey - C&P Exams Tomorrow

Many friends know we have to go to Atlanta tomorrow for John's Compensation Exam.  This is nerve wracking for me on several levels. First, last year's exam was incomplete and not at all accurate.  We were told after the fact that the examiner was not "qualified" to conduct TBI/PTSD exams.  She didn't adequately fill out the papers, didn't submit them back to the VA in the allocated time frame, and it was a miserable experience.  The VA only sent about 10 pages of medical records (out of 300+ for the year) for the examiner to review.  They didn't record the actual responses John gave for the complaints and disabilities being evaluated.  It was such a frustrating experience driving all the way to Columbus for three separate days that just before his PTSD evaluation John jumped out of the moving truck on the freeway.  Yes, you just read that right.  I knew he was agitated and had slowed down and pulled over as much as I could before he bounded out of the truck, but it happened.  I eventually coaxed him back into the vehicle and we went for the remainder of the exam.  You better believe I was shaken but guess what....even after that and all the other details of his symptoms and daily life, the examiner reported that John didn't have any significant difficulty on 14 out of the 16 facets listed.  Yet, the VA exam at the VA hospital by two collaborating physicians on the same 16 facets showed EXTREME difficulty in 14 out of the 16 facets measured and some difficulty on the other two. 

So, our financial well being and John's access to more local medical care literally lies in the hands of someone we will see for about 3 hours tomorrow.  Dear Lord, I really pray they accurately record what is real for us.  We're not asking for something he doesn't deserve.  We just want what is needful and appropriate.  Did you know that between the 80% compensation that he presently gets and the 100% that he needs, there is a $1400+ a month difference? Yes. Stark difference. The price of our mortgage and taxes each month, actually.

Even though the VA determined over two years ago that John needed a full time caregiver, and gave me a stipend and health benefits, they have also denied his compensation for Aid and Attendance stating he needs no assistance or care! Yes, they did. Even though his neurologist at the time we applied (Sept. 2011) wrote "Needs Constant Supervision" across the bottom of the application.  So John is frustrated that the VA pays me more when he's the "suffering" one. Right now we can't get close medical care for John.  We have to drive 1.5 hours for emergency care and 3.5 hours for regular care.  Even though the VA allows me ChampVA health care insurance and I can access whatever resources I need close to home because I take care of him.  For me it is great. Yet, it shows how warped the system is because John can't get the same care. 

John's supposedly "expedited" Social Security Disability was denied because the VA hadn't determined him "Unemployable." So now we've waited 12 months on an appeal that hasn't made any progress.  John's Unemployability was denied by the VA based on the fact that they didn't see any barriers to employment.  Yet, he now hasn't worked in 23 months and the Vocational Rehab division has him enrolled in the Independent Living division because they determined him to not be suited for employment or education.  So, they have given him new can openers, jar openers, pens, eating utensils, etc.  so he can be more independent when he looses feeling in his hands.  They gave him a vacuum and a steam mop, a couch cane for assistance getting up, and a pill container that alarms and talks to him.  Still we can't get the home renovations approved.  The housing grant was denied  because John has a brain injury and seizures. Since he hasn't lost a limb or eyesight, they say we are out of luck and have to struggle. (See "We are the VA Backlog" blog)

John fell several times this week again.  He had a multitude of seizures again.  We can't get his oversized wheelchair through the door to our bedroom or our toilet closet or our clothes closet.  This week the most frustrating was when after helping him to the bathroom he had a seizure and fell against the door closing it and blocking my way in.  We were helpless to help him.  With the exception of a few weeks this year, this has been an almost every week struggle.  For a while last year we left several of the doors in our home off.  We took them off the hinges and completely removed them so EMTs could get John out on a couple occasions and John could maneuver easier. 

Now, however after a few bills the VA refuses to pay at our local hospital, John refuses to go there.  A few months ago after a bad fall my grandfather took him to the hospital and because he didn't have insurance they acted like they didn't want to treat him.  They gave him one shot and immediately brought discharge papers, even though it didn't relieve any of his pain.  They refused to call the VA hospital for transfer or treatment, and we wound up driving the 90+ miles to the nearest VA facility as John had to have some relief from the pain after the fall on the tile floor. 

Oh I digress.  If you're still reading my frustrations then "Thanks" or "I'm sorry." I am not sure what is more appropriate.  Today, I needed to vent.  I'm concerned.  I'm scared.  I fear that tomorrow's exams will not be adequate and we'll have to keep fighting for appeals.  The congressman's office requesting expedited case due to hardship didn't work, the Voc Rehab putting in requests for Dental treatment in May and June didn't work, and filing a wounded warrior SSD claim didn't work.  We've been in a backlog of claims since 2008 and I'm tired. I'm tired of fighting it and I can't get a break. 

We took one of the new Disability Benefits Questionnaires to John's Mental Health doctor two weeks ago to his 2 week check up.  My thoughts were that he'd seen her for about 2 years and she could accurately describe his need for total disability.  We go to the appointment to find John had been reassigned to a new doctor.  His doctor wasn't gone but as the VA hired many new MH employees, they redistributed the cases.  Oh my...."Here new Dr. W. Here is this detailed questionnaire for you to fill out" and my heart sunk again because I wanted it done by the doctor that knew John and knew of the severe issues that he was having and knew that they were real. 

Dr. W. did check the box that John has "total social and occupational impairment" and I was happy to see that he did a 97% accurate job, in my opinion.  But it is frightening.  I'm not supposed to be the paranoid one but the whole process is beyond frustrating.  Yes, I have faith....I've had faith....and I am sure I will continue to have faith.  But my faith in the VA system is wavering.  My faith in God to provide for our family is still there but we desperately need this increase in compensation from the VA for my husband's suffering and impairment from his disabilities.

So, if you are still reading....PRAY! Send up a prayer on our behalf that when we get there tomorrow we'd have favor and the records will be in order.  The symptoms and problems will be apparent and recognized and recorded appropriately and justice and mercy and goodness will prevail on behalf of this wounded veteran and his family.

Celebrate Independence and Thank a Vet

Today is a day of national celebration.  Again another holdiday marked by food, family, friends, BBQ, deserts, and maybe a little watermelon.  Yet the true meaning of the holiday is to celbrate America's independence.  We need to take a moment to acknowledge the battles and perserverance of the founding fathers and those who settled in America and then fought to keep her free all these years. 

 

Remember the Veterans that have sacrificed for our freedoms and remember also that some who come home still suffer from the mental and physical wounds they incurred as a result of their service. 

 

If you have combat veteran friends, family, or neighbors be aware that the celebrations, fireworks, crowds, and loud noises may trigger panic, PTSD symptoms, dissociation, etc. 

 

Happy 4th of July.  Happy Independence Day.  Thank a Vet today.