It's all his fault

There are so so many important issues that I should be writing about.

Easter just passed.  

I planted parts of Tracy's ashes in several places.

ALS research and politics.  Insurance issues.  Other ALSers issues.

Work, finance and family.  Things that matter.

But since there is no one here now to MAKE me be responsible, I choose nonsense.

I told him not to go.

 I warned him what would happen.  

I am not making it happen.

I am not purposely creating a self fulfilling prophecy.  

Knowing what will happen is not MAKING it happen.

 There is no one here to make me go to bed so I'm not.

I ate a late dinner of expired cottage cheese, brown peaches and a half dozen chocolate chip oatmeal coconut oil cookies.  If I wasn't so lazy I would add fried puffed rice.

I am migrating back to my baggy clothes covered with paint and leave the house forgetting to even check if I have make up on more and more days.

I warned him.  It's all his fault.

Let me try Me being Me- Hope you can handle it.

I am on my way tomorrow to Peoria to see family and pick up my dad to bring him for a quick visit to Dallas.

I am doing my best to focus on packing and planning who I will visit when, St. Pat's Day, bringing art back to sell to my loyal friends and customers....

But I picked up the phone today hoping it was someone wanting to buy our van but it was someone from Reliv.

This is a nutrition company who is doing a study to prove their product helps heal ALS, checking to see how we were doing since they didn't hear from me in so long.

I explained what happened and instead of the quick awkward hang up I expected the representative asked questions and was very interested in hearing about our journey and wants to keep in touch.

She also mentioned the new video with Dr. Bedlack who is working to validate the healing of ALS.

Then I heard from the HealingALS.org people who are concerned about me and want me to know that they are working to get the truth out but in the mean time I need to take care of myself and that may mean I need to step back from the healing path and come back when I am more rested and energized.

(No, I have never heard from Tracy's doctor except that her staff called 3 weeks AFTER he died to see if he would be on time for his next visit.)

Then I look on my Facebook page and see a post from a physical therapist that was friends with Tracy's physical therapist posting about the fact that he works with people daily that have health issues directly to do with poor diet and nutrition and harmful medications.

I keep trying to mind my own business and give myself time to "heal".  I am doing the best to work through my grief of the loss of my love and life and love of my life.  

But the Universe just keeps putting it in front of me.  I think perhaps Tracy and I were never typical and my healing may need to be an unexpected route as well.  Maybe my healing will come in the form of helping others heal.

I'm healing not only from losing Tracy but also from the shocking journey through the medical madhouse we found ourselves in.  I am working through the repeated shaming and demeaning lectures aimed at my "denial of their TRUTH of hopelessness".  

I can find no balance in the world I am waking up in.  It's not the world I left.  That world died at diagnosis when we were BOTH offered drugs upon giving us their truth.  

Ignorance is bliss in comparison to finding out that you can indeed die due to a lack of money and lack of information.  Those I was taught to trust as a child are the exact people who let us down repeating their mantra of doom while the new "crazy charlatans" helped us for FREE and continue to check on me now that Tracy is gone.  Oh, by the way- those Crazies are ALSers that are long time survivors who have healed themselves thru extreme healthy living ideas and are completely ignored by the "experts" in the medical world.  

Can you hear in my typing the underlying over laying frustration that is at the center of my issue.

How do I heal that by NOT addressing it?  I keep trying to look away and go around and ignore this TRUTH.   When I get phone calls asking for help with a loved one who is struggling with ALS do I hang up?  When more and more facebook posts are about the scamming of America through pharmaceuticals and the ridiculous commercials pushing drugs for a clearer complexion with side effects of suicide, liver failure or blindness- how do I ignore it after what we've been thru?

Since NOT being me has not helped me I am going to give BEING ME a shot.

This I realize may be a less than comfortable ride for many many people very close to me and for that I am truly sorry. 

My turn at wellness

All my happy positive Pollyannaing is slipping away as I deal with health insurance.

Tracy paid health insurance for our family out of his own pocket for all our married years until ALS.

In 2009, since he never ever went to the doctor and didn't actually even Have a doctor he chose to drop his disability insurance to save money when times were tough.

Well, we all know how that turned out.

But- my post today is about the craziness of our health care system. 

My only experience with insurance and the medical world started when Tracy was diagnosed.

I felt that the insanity of that situation would be separate from those of us not dealing with catastrophic illness.  

So I have a really bad gut ache.  How serious?  Dunno.  I have stuff to do tho and can't.  Do I wait it out or get it checked?

I have a time line.  If I gamble and it doesn't go away then I am traveling with it. I am missing the tiny little bit of work I do have.  I guess I need to have a doctor anyway since I'm getting older, not younger and I really should practice BEFORE something serious happens and I am stuck trying to figure this out while having a heart attack.  And so it begins....

I look on my paper health insurance card that says-  for identification only- not proof of eligibility.  I call and say- isn't an insurance card's purpose to show you have insurance?  They say- yes but it doesn't prove you've paid your bill.  So....what do I do?  They check- oh- you've paid your bill.  (this I know).  Ok.  So the people I show this to will be ok with it? yes.  Then why...huh...never mind.  

Now I say I've never used my insurance before.  I would like to go to an Urgent care but when I call they don't take my insurance.  They politely give me one that isn't too far away but say you should call your doctor.  I see the name on the insurance card and agree and they give me the address.  They then give me the hospitals I CAN go to which turns out to be several in this area. Good.

I call the doctor to get a "leave a message" message without any information as to whom I am actually leaving a message with.  No call back. (now remember I am feeling bad enough that I am debating between Urgent Care, ER or Doctor).  I recall in an hour to find out that it's a pediatricians office.  I call back the insurance company who has been really wonderful actually and they are embarrassed and give me a choice of a couple other doctors but now it's noon and the offices are closed so we can't verify anything.

I call after 1 to find out the office doesn't open until 1:30-5pm.  (hate to get the doctors out of bed early).   I call back to have them say the soonest visit is 2 weeks at least but I can do a walk in. 

If they are booked up and I am sick why don't I go to the Urgent Care who doesn't book so I would actually be first come first serve?  Except I have to pay more for Urgent Care but at this point I con't care.  So the only time I would see my doctor is if I am well or if it's a check weeks after someone else has seen me in an emergency. 

This day makes it clear that my only real option is to stay well.

 

 

 

He says it like it is

I am posting this post from Facebook by an ALSer who so eloquently states EXACTLY why Tracy didn't socialize here in Dallas.

‎Gary HavenWood van Houten‎ to ALS We are in it together

March 4 at 5:12pm · Lakewood, CO, United States ·

I think I will make a sign, "Hello, I have ALS. This is a neurological disease that affects the nervous system. This includes my speech abilities. I also have an IQ of 135, which is in the upper 5%, graduated college with a 4.0 with honors. Although I speak like I have a clothespin on my tongue, my mind is sharper than a tack and when you say something like I am 4 years old, my mind is racing to plot against you. Since I no longer have dignity of speech, I am impervious to ridicule, and will think nothing of making you look bad to any number of more empathetic individuals other than yourself, who can gauge intelligence from the evil glint in my eyes, and will fall on the floor laughing when I make the fool out of you without you knowing, in a public venue. Ask me for the definition of any of these words that may perplex you. I know what they all mean." (Jus' sayin') There, I feel better.


For those of you who knew Tracy Pre ALS it wasn't as much of a deal except it was so very embarrassing and frustrating to him to not be able to speak or eat around people.  But when we had to go to doctors appointments, social situations or clinic, etc. where he was FORCED to answer questions this situation of people treating him like he was senile or brain damaged made him CRAZY!!  Most especially it was irritating when nurses and health care people yelled at him or spoke slowly because they should have KNOWN that his mind was all there.  Occasionally he would put me in the awkward position of saying something so far over their heads that they had to say WHAT? not because they didn't understand his words but because they couldn't understand HIM.

He also was a fan of giving me THAT look- warning that if I didn't put a stop to it he would actually TELL them what he was thinking.  I have found it's a common thing that although many ALSers can't speak well they can SWEAR VERY CLEARLY.  Now add to that the Eye Gaze where I had No control or filter!  Yikers!  Tracy would hit the speak button 10 times before I could pull his eyeballs off the screen!  F No, F no, F NO, F No.... As I raced over in horror he would just laugh.

So- the message is- don't assume that because someone's body doesn't work that their mind doesn't work because most of the time that is not the case.

There, I feel better too.