Extras ~~~ "I'm at risk for Huntington's..."

I'm at a point of catching up again.

It's October 2013. This year has just zoomed by. I can't get over it.

I think I'll work backwards here. I probably can remember better (if anything) this way.

Most recently involves my little Grand Nephew Mason. For the past six weeks he's been in and out of the hospital with complications from a brain tumor. He was admitted on the 29th of August (I think). The tumor was removed successfully and Mason did very well through it.

Out of surgery and a smile for Daddy. My heart broke when I saw this picture. His little arms in restraints to keep him from pulling at the cords and catheter. (Catheter is draining fluid from his brain)

No more bandages! Another smile for the camera but I think he's more relieved to be able to sit up! Catheter and restraints are gone! God was watching over this boy. He will be home by September 5th.











He did very well until September 10th. The fluid wasn't draining properly so back into the hospital he went. It was a short stay as he was home by the next day. He's so adorable, isn't he?

So, he was so happy to be home again. Honestly, I don't think he has let any of this get to him. Randy (Grandpa) says he such a happy little boy even through all of this.

Then, on October 5th, he started having seizures. Back into the hospital again. This was over night. He was put on meds for the seizures and they sent him home.

He had his hair evened out after this hospital visit. His right side had been shaved but not the left so Kelsey and Jeff finally had it evened out.

 Yesterday, he had to go back to the hospital. Fluid was leaking around an old incision. After all the tests the doctors decided to remove the shunt from the outside of his head and put in inside. Thinking this would be a quick fix and back home again, Kelsey posted on FB saying "three times in the hospital in six weeks" was too much and asked for prayers.

This morning on FB Kelsey wrote:

"So we didn't get the great news we were hoping for this morning. The spinal fluid in Mason's brain around the shunt is infected. This means that they are going to have to pull all of the hardware out of his brain they have put in the past few weeks in order for the infection to completely go away. So he will have surgery this afternoon to have the shunt pulled out. He will be in the hospital for the next two weeks or so on antibiotics to fight the infection, and once it is gone, he will have surgery again to put the shunt back into his brain. This is all very frustrating and hard to understand how things keep going wrong no matter how careful everyone is. However, despite everything, Mason has been very happy and basically his normal self all day. Please keep the prayers coming."

So, prayers have been said again and I ask anyone, who might read this, please keep little Mason in your prayers. Poor baby. He really is a happy little fellow. No matter what, I know God has watched over him through all of this and He is with him still.

Florida Family

On October 10, 2013, two days before her Grandpa's 64th birthday, Eleanora Antonia Abella was born. Isn't she beautiful?
















                                 Grandpa Shelby and Eleanora.

                          Oh my goodness, she's so precious!


                                                       





Auntie Lee and Big Sister Evie with Eleanora.















                                                In Shelby's arms.













So sweet! Not sure who's holding her here.









Grandma Paula, Aunt Lee, Evie and Eleanora. I've been wondering what they will call her. I mean, Evie is Evelyn. I'm thinking Eleanora might be Ela (or Ella). I'll just have to wait and see.








Mama, looking so lovely and happy. Evie and her little sister. I love this photo.

No pics of Papa yet. I'm sure they'll be up soon.













Then Aunt Catie visited.
           



   
           

My Friends
September 29, 2013, Debbie and Jeff came up for a quick visit. They drove up that morning and were leaving the next morning. They squeezed in a long visit with Jeff's mom and sister, Suzie and her husband Kyle. Then they came and got me and we went to visit Mark and his friend Heather.

Debbie and Jeff are seriously looking for a house up this way. Preble county maybe where it's a bit more spacious. But, they're having a horrible time trying to sell their house. It's all a waiting game right now.

I took some pictures but my camera was fooled by the light and most are blurry. Debbie will hate her photos as she looks like she's been drugged. No, she wasn't, but it had been a long day.

Above: Not too bad of Debbie. She's trying to talk while the picture was being taken. A good one of Jeff  here. Handsome as ever.

Just a good picture.













Mark and Heather ~ Sweet.

















Old man Marty.

Satch starting to show his age.

Debbie and me acting silly.










                                              Below is a pretty good picture of us both.

Florida Family August 4, 2013

Shelby, Anna, Evie and Lee made the yearly trip up again. When they arrive, they try to cram several things into one weekend. For instance, this year they started arriving on July 31st and/or August 1st. Since Shelby is self-employed he usually stays about ten days to two weeks. The girls usually have to go back by after two or three days.

This trip it was Lee who had to return early. I never did find out when Anna left. I think it was the day after Lee but Shelby stayed on. He not only visited with us he made a trip to visit other family and of course the friends he's known all his adult life in Yellow Springs.

The August (fourth) day turned out to be beautiful with the sun shining, a breeze blowing and the temps in the low seventies. We couldn't have picked a more perfect day!

Shelby

                     Anna Lee and Shelby

Lee Anne







Below, Evie just up from a nap.

But she was happy about the pool!







                         Lisa and Mason


                                 




Randy and Mason

                                                 Shelby and Barbara June

Diana and Randy






                                         Shirley  

Diana                      

 Barbara ~ Shirley ~ Shelby

Kelsey and Mason (this is so sweet)

                            Beautiful Jenny

Tom and Darrin














Now

I am using my calendar to work backwards. Everything I have written or posted here is the most major events of this year. I'm sure I'm missing something. Still ~

I have gone through two family doctors this year. I stopped going to see my original family doctor for one specific reason. I was in her office in 2012 when an ambulance was called to come and get me. When I went to see her after I got out of therapy I sincerely believe she forgot that I was in the hospital. I was blown away by the fact that she had no records of treatment, prognosis or medications.

I stayed with her just a short time before I went to a clinic doctor. I stayed with him until just this past September. The reason I left him is twofold. First, people who work in a clinic are demeaning, condescending and uncaring. My doctor was okay but how can one work in this atmosphere and not see what is going on.

Second, he sent me to a Pain clinic. Again, the people that work here are as described above but so much worse.

The clientele was - - - I hate talking about this. I sound judgmental.

The first person I spoke to was a woman.  Actually I saw her before I spoke to her. I stood in line to sign in (yes, in line). I was reading some of the signs hanging on the wall next to me. "Payment is due before before you can be seen." Okay. Not a problem. I hadn't a clue I had to give a urine sample. The next sign went something like this:

You will be asked for your sample-If you can not give a sample you will have to wait 20 minutes-At that time you will be asked to give another sample-If you can not give a sample your appointment will be cancelled.

Remember, a patient has already paid for their visit and NO money is not refunded if the appointment is cancelled.

I was slightly appalled but okay.

While I stood in line I saw a lady moving around, talking to anyone who would listen. She talked to the guy who called the patients a couple of times and several of the patients in the waiting room.

When I got to the window the woman at the counter hardly looked at me. I told her politely that when I called for the appointment no one told me about having to pay up front or about the sample. "It's how we do things here." She said without looking at me. I told her I've never gone into a doctor's office and had to pay for my appointment before my appointment. "It's just how we do things here." I paid for my appointment.

I moved my wheelchair as out of the way as I could since there was little room to move in the waiting area. I had forms to fill out. I bent over a chair to do so when a man came out of the back. He obviously had seen a buddy across the room and yelled, "Yeah, I just got out of jail and need my stuff!" He was standing over top of me. I couldn't help it, I quietly began to cry. The man continued to talk to his friend until I finished the paperwork. I returned it to the woman behind the counter then I just tried to stay out of the way. I waited and watched. Patients were called back but would come back out within about ten minutes.

The lady that kept talking to people spoke to me. She apparently couldn't give a sample both times. She was hanging around in case they could squeeze her in. It all became clear finally. She had to give a sample to get her drugs. No sample, no drugs.

I wanted to leave but I was here, I'd tough it out. I waited and waited. My appointment time of course had come and gone. An hour had passed. All the waiting and my morning meds were dictating it was time to go to the bathroom. I told the woman behind the counter; she just looked at me. I waited as long as I could but I had to go. I hurried to the bathroom and thank God I was able to get my wheelchair in with little problem.

I just rolled out of the bathroom when my name was called! I couldn't believe it. I told him I had just gone. I told him I told the lady behind the counter too! No matter. I had to wait twenty minutes. I was so embarrassed. I didn't think there would be a problem though. Taking Lasix in the morning moved things along properly.

Forty minutes later my name was called again. I produced a sample and was told to go back to the waiting room. What? I had to wait out there for my actual appointment!

I waited an hour and a half before I was called back to my appointment. I was treated to "how things work here" by an intern. Basically it was if we give you drugs today you'll get them for ten days and you'll have to come back. What they aren't saying, 'we don't trust you so if you take too many or are just selling the drugs we'll know it when you come back'.

I was near tears again at this point. Two doctors actually came in after this. Two! They were so excited to be talking to someone who had Huntington's Disease! I looked at them confused and promptly told them "I'm at risk for Huntington's but I don't have Huntington's". Someone obviously looked at the paperwork wrong.

They blinked.

After that I was nobody to them and treated as though I was wasting their time. I can't talk about this experience or even write about it without feeling ashamed and small. I left the clinic in tears and sat on the sidewalk waiting for my bus. Of all the days we had this year that were beautiful, today was hot and humid.

What I actually wrote about this clinic was difficult. I can't write about all of it nor can (should) I say what it looked like. It would sound judgmental and that's not what I want to convey. Simply put, when one is not used to something like this, it can be demeaning. Needless to say, I will never set foot in a pain clinic ever again AND I left my second family doctor.

I am happy to say that I am now with a (so far) pretty good doctor. He's helped me quite in bit and I've only seen him twice. He has been the only doctor (in two years) who has fully explained about the pneumonia shot to me. I am not allowed to take the flu shot as I am allergic to eggs. It has been pounded into me about NOT taking it so when the pneumonia shot came out I was leery.

I took it and lived to tell about it!

I did tell him about the pain clinic (story) and left nothing out and cried while I told it. Even writing this now, tears push out and I feel the immense shame of being in that clinic.

Before I left that appointment the nurse has told me that there is a flu shot for people who are allergic to eggs. She ordered it for me. Actually, she called me yesterday (the 21st of October) and told me it was in. It seems I'm getting a flu shot this year.

Other Things

Once out of the hospital, Jeri has been so helpful to me this year. She has taken me to most of my doctor appointments. She has taken me to the grocery. Some of these trips have included Eric. My sister and I have become close again and I am intensely aware of how much I've missed her.

Even though it is just October I have to state that it has been a year of learning to adapt. I have gotten used to my wheelchair but still insist that in about two (or less) years I will be walking whether I will still need it or not.

My arthritic knees, hip and ankles aren't the only thing that keeps me from standing. My feet have their own problems. The fact remains, I was walking before I went into the hospital, I will walk again.

A realization: Talking to Becky the other day I was told that I had a heart cath while I was in the hospital. Nope, don't remember it at all. Of course it happened while I was still on the vent. They found nothing wrong with my heart (aside from the a-fib). No blockage of any kind!

This realization only makes me more curious as to what really happened to me. No one seems to know why I couldn't get off the vent. I keep saying I'm going to call the Valley and get my files. The only reason I haven't done it yet is I'm pretty sure they'll charge me for them.

I see Dr. Lynch (my heart doc) in November. I will talk to him at length about what is/what isn't in my file.

I'm about as caught up as I can get. I will be diligent at posting regularly from now on.