Waiting.....

Kevin had 4 appointments yesterday with VA rating review doctors.  Kevin had to endure the 1-1/2 hour drive to North Chicago and back, 4 doctors poking and prodding him and x-ray techs man handling him.  We left the house at 6am and didn’t get home until 4pm.  I was wiped emotionally, physically and mentally.  I can’t imagine how Kevin felt.  He basically collapsed when we got home.  The strength and will power Kevin has to fight through the pain to get this done.  All the doctors concur, Kevin is 100% disabled and should be rated as such.  That is the problem.  The doctors know it, we know it, but the people at the VA Compensation and Pension department do whatever they want despite what we all know.

The neurologist Dr. Hazelrigg, that saw Kevin yesterday was the same one he saw back in June when we went through the first appeals process.  The doctor couldn’t believe we were back.  He thought for sure Kevin would have gotten his benefits from his review.  Not the case.  See the VA does not have a rating for RSD/CPRS so they rate it under whatever they feel like rating it.  And they will pick something that yields the lowest rating possible.  Like in Kevin’s case, they rated him 10% for partial paralysis.  Kevin has limited mobility, but he isn’t paralyzed.  So hence the 10%.  So we had to express to these doctors yesterday that they need to chart on every symptom Kevin has because of his RSD.  Swelling, pitting of skin, muscle spasms, redness, anxiety, and depression just to name a few.  He will be rated on each of those secondary diagnosis instead of being rated just for RSD.  This isn’t what we want or hoped for.  We hoped through the Chicago Tribune article and the VFW, the VA would be forced to have a rating schedule for RSD itself.  Not going to happen.  So every other Vet that ends up having RSD, will go through this same BS that Kevin had to.

I realize now that the doctors aren’t the ones totally at fault in the VA it is the red tape that binds their hands.  Though I will still go on record that North Chicago has some quack doctors on staff.  The Ortho doctor, Dr. Groves Kevin saw yesterday was off his rocker.  And I don't want to spoil my blog with a bunch of obscenities for Dr Shulmann in Neurology, who thank goodness was not the ratings doctor we saw yesterday.

The VA is so stupid.  If they would just give RSD a rating, like they do for Fibromyalgia (50%) or Migraines (40%), they would get by a hell of a lot cheaper on paying out benefits then forcing all these secondary diagnosis to get a rating. 

The thing is, I don’t even care about the money.  No amount of money is going to cure Kevin.  No amount of money is going to manage Kevin’s pain.  Sure money will take stress off of us, will allow us to outfit a home for his disability, will allow us to buy furniture to suit Kevin’s needs, but Kevin will still be in pain.

We want recognition for the disease and research for better treatment options.  But I guess no amount of money in the world will have that happen either.  Look at breast cancer and diabetes.  The billions of dollars raised and all the recognition for those diseases and they still haven’t come up with cures.

I guess this fighting the VA for benefits and fighting for SSDI has been a distraction.  It has been such a big part of our lives since September 2009.  When it is all said and done, will we be any better off?  Financially maybe.  But Kevin won’t be better off.  He will still suffer daily with pain.    

Policies and Procedures

Well we made our trek to the Milwaukee VA yesterday to get some help in getting Kevin’s pain under control.  It was to make up for the appointment we missed last week when Kevin ended up in the ER instead.  The appointment didn’t go as well as we had hoped.  Right out of the gate it seemed like the doctor had an attitude to us and was bothered to deal with us.  Kevin is in a wheelchair writhing in pain and the doctor shows no compassion.  Says “so I see you were in the ER last week”.  Yes, so what are you going to do about it? I thought to myself.  The doctor, who is Kevin’s primary care doctor, says, “I don’t know what I can do for you…I am not a pain specialist…the Pain Clinic would know more”  So Kevin asks the doctor to call the pain clinic.  And the doctor says “I can’t do that, I have to put a note in the system”.  We ask that he put the note in the system then.  But it wasn’t going to help us with our immediate problem of Kevin suffering in severe pain. 

See with the VA there are A LOT of policies and procedures.  In Kevin’s case, the Pain Clinic is the one that prescribes meds that work with the nervous system to alleviate nerve pain.  And there are procedures that need to be followed.  They have to try drugs on a list and keep going through that list in a specific order until they find one that works. So Kevin has run through the trials of Neurontin (Gabapentin), Topiramate (Topamax) and now Venlafaxine (Effexor) just to name a few.  And the trials aren’t for a few weeks.  Well unless you have a severe reaction to it like Kevin did with Topiramate, then the trial of the drug is stopped.  The doctors will put you on a low dosage and you try that for a few weeks, then they titrate you up in dosage.  So the trials of a drug that are having no positive affects on you could last for months.  In the meantime, Kevin is suffering with extreme pain.  But the pain clinic doesn’t prescribe pain meds (narcotics).  So what is a patient supposed to do while they are in a trial of a med prescribed by the Pain Clinic that has no positive affects?  According to the VA, go to your primary care doctor for pain meds.  So that is what we did, went to the primary care doctor to get more pain meds and we get the ” I don’t know what to do, I am not a pain specialist”.  Vicious circle.

In frustration, my water works start and I lose it with the doctor.  Kevin is suffering in pain stuck in the middle of this pissing match between the pain clinic and the primary care doctor of how to treat him.  The primary care did cave and prescribed more pain meds for Kevin.  They put him back on Fentanyl patches.  He was on them before he got his nerve stimulator implant.  And he was weaned off them by the pain clinic before his implant surgery.  Fentanyl is a nasty drug to get weaned off of.  It is VERY difficult to do.  Fentanyl patches are prescribed to people in Hospice.  So it is a double edged sword.  Kevin gets some relief from the Fentanyl, but we don’t want him on it.  And I am sure when we go to his next Pain Clinic appointment in March they will be less than thrilled that Kevin is back on them.  But what are we supposed to do.  Kevin can't live like he is living.  ER trips were becoming more frequent.  The pain outbreaks were getting more severe.  The RSD has spread to his arm and the doctors don’t have any sense of urgency to work on a resolution.  It is sick and inhumane, to let people suffer all because of policy and procedures.

Self Promotion

In these times of facebook and blogs, it has become self promotion.  Even my blog can be considered self promoting.  Look at me.  Look what I have gone through.  Look what I deal with.  Look how strong I am.  Look how special I am.  Feel sorry for me.  Pray for me.  Censoring myself, only putting out there what I want people to see.  I am ashamed of myself.   Just because I went through what I went through and came out of it OK, doesn’t make me any more special than anyone else.  I didn’t get through it alone.  God walked with me, holding my hand. 

Chatting with a good friend of mine today, I realized how I need to work on my inner harmony.  Work on my soul.  Not worry about who hears or sees, but worry about what I am saying or doing.  Because God hears and sees all.  I am not fooling him.

This blog entry is coming about because of something I said this weekend.  And how I was more worked up about who might have heard it, than actually saying it or doing it.  I was calling my church to inquire about a food pantry drop off.  I got their messaging service and was just about to leave a message when Lincoln turned the TV on full blast.  Well a bunch of expletives came out of my mouth and I yelled at him.  I then realized I still had my phone in my hand and panicked that my scream fest was recorded on my church’s answering machine.  And what I got upset about was not that I yelled at my child for no reason, or the words that came out of my mouth were bad, I was upset that my church would have heard me say it.  It shouldn’t matter who heard it, I shouldn’t have done it.  Because God hears and sees all.

Don’t beat myself up over that, right? I have a lot on my plate.  I am stressed.  Well that is no excuse.  Just because I am going through a lot does not give me a pass to say or do something I shouldn’t.  I needed to get knocked off my pedestal.  Because I deal with all I deal with and manage to get through it, I got a superiority complex.  Look at me.  Look how special I am.  Look how strong I am.  My blog was meant for RSD support and it turned into self promotion.  It wasn’t my intention.  Just became self consumed in all my problems.  I am sorry for that.

"Have you had suicidal thoughts?"

Have you had suicidal thoughts? "No..but the last couple of days I have been thinking, I have had enough".  That is the conversation I overheard last night in the emergency room between the doctor and my husband.  And it rocked me.  I lost it. Tears welling up, I turn away so no one can see me cry.

It was supposed to be just a doctor appt in Milwaukee to re-evaluate Kevin's pain meds.  Instead it became a 6 hour emergency room event.  Kevin had thrown up, lost bladder control and was blacking out on the way to Milwaukee, so calls to the doctors and we were told go directly to the ER.  They were scrambling when we got there trying to find a place to put Kevin, trying to do something to help him before a doctor was available to prescribe something for the pain.  We were put in a supply room.  So there were people coming and going in the room for supplies.  All looking at Kevin and giving that look of pity and saying "I will see how they are coming with those pain meds".  It is hard to watch your loved one suffer like that.  He was clenching his teeth so hard he chipped a tooth.

Finally the pain meds came.  His spasming leg subsided, his hands which were fists and his clenched jaw relaxed.  Ahh relief.  They were talking about admitting into the hospital.  We just wanted to go home.  So two hours go by, "how are you doing?" the nurse asks.  Kevin says "the pain is starting to get uncomfortable".  Off the nurse goes, comes back with a syringe and plunges it into his IV.  "I will check on you later".  Another hour goes by and same thing.  We just want to go home.  Finally they give the OK for us to leave.  A feeling of relief comes over me.  Then a feeling of worry.  Maybe he should have stayed.  What if something happens on the 1-1/2 hour drive home.

I was getting so tense driving home.  My neck and back were killing me.  The headache settles in.  I end up waking up with the same, so decide to call off work to decompress.  It is helping me mentally to be home with Kevin today.  He is doing much better than yesterday.  Relaxed as he can be in pain all day.

What a wild ride yesterday was.  To feel so helpless and scared.  Relying on people you don't even know anything about to take care of your loved one. I am just relieved we are home, safe and sound.

Waking up time

My son Lincoln wakes me up on the weekends by saying “it is waking up time mommy”.  Yesterday in church during the homily, I found my mind wandering to other things than what the gospel was about.  Lincoln looks up at me and says “it is waking up time”.  I know he said it because of the sun shining through the windows and he was fighting falling asleep, but it really spoke to me, that I need to wake up and focus and listen.

I have been away from my blog for awhile all caught up in my crazed life.  Kevin’s RSD, our recent move and the holidays.  I have had time to decompress and really reflect on my life and how fortunate I am.  God gave me the good things and the bad things so I could experience life fully.  It is hard to watch Kevin suffer in pain daily, but to be witness to his strength is amazing.  And I get the opportunity to show my strength and my support.  Those are blessings too.

In times of crisis people always come to help and offer prayers.  But when it is a chronic illness that goes on forever, never goes away, some people forget and fall away.  Then when you give a window into your life, like the Chicago Tribune article and video, some people pull away, not knowing what to say or do.  They treat you differently because they don’t want to upset you, or burden you with anything else because “you got enough going on”.  You become that elephant in the room.

It is waking up time for everyone in my life.  Kevin is disabled with RSD.  He will always be disabled.  It isn’t going away or going to get better.  Please don’t pull away or avoid or be afraid of what to say or do.  I need all of you in my life now more than ever.  I want to be there for you in your good times and in your bad.