Happy Birthday to me...

Today is the 27th anniversary of my birth. Let the world rejoice in fear. This year's disaster probably lay in that my on of my Best Friends, Darin, and I are not celebrating together. (His birthday is on Febuary 1st) I will be spending today with my other Best Friend, my beautiful wife. On the 1st there may be a gathering of fellow psycho's in San Francisco to celebrate Darin's birthday, which I hopefully will be joining.

Let the Celebrations begin!

Luke

Some more Good News

I found the really old clunky family site I used to run. Now it is on my new site in all its shameful cluttered magnificence. Click here. I will get to cleaning it up as soon as my life isn't so incredibly crazy.

Luke

Some Good news.

As some of you know Kesi has some speech problems. We thought it might be due to the frequent ear infections she had as a baby, which would mean she had some mild hearing loss. We found out today that she has Excellent hearing. She just has some difficulty with certain letters. They will be doing some speech therapy on her and she should clear up soon.

Luke
犬が　ありません、それで　犬が　ほしいです。

More Medi-cal problems

First I want to say to all you reading this: Please feel free to make comments! Dialog makes this even better.

Well we found out that the reason Melissa has not had her 1 week follow up (even though it is now 3 weeks later) is yet another paperwork mishap. Apparently the ER Dr. did not know that he needed to submit a Treatment Authorization Request (TAR) to get her follow up approved. She is in a lot of pain and probably really needs an LP despite really not wanting one. In fact, she said earlier today that she wants one because of how much pain she is in. Unfortunately, all we can do is wait for the paperwork to get processed now.

The degree of pain is so bad now that Melissa has already asked about going and sitting in the ER again to get another LP. I dread the idea of spending another 10 hours in the ER Again, but it may be what we have to do. And this is not a good timing to spend in the ER. Friday is Kesi's hearing and speach specialist appointments, Saturday Melissa has an all day class and it's my Birthday....

I have been completely unable to work any temp jobs around our schedule so money is kinda tight. Oy, vey.


Luke

What life has been like....

I realized that the details may have been a little sketchy.

This thing is a pain in the butt. The biggest thing in our life right now is keeping up with it. Melissa is fatigued and in pain. Since we are both students scraping by this makes our schedule a little tighter. Fortunately, we have her parents to help with watching the kids and now that Arriana is in school she is taken care of for most of the day during the week. All of our professors are pretty sympathetic. I am a little behind but nothing huge. Melissa had to drop a couple classes but she remains optomistic about the rest of them.

Insurance. As some of you know we are covered my Medi-cal because we are students and don't own our own home, etc...They have been good so far about covering the medical costs. Mostly they have been a hassle to get into the doctor. So far I have had to make dozens of calls to get anything done. To even get her in to see the ophthalmologist, I had to call and call. At first they denied the claim mostly due to a paperwork error. I had to appeal it to get it approved. This took about 2 weeks. During which Melissa was in pain and having vision problems. After seeing the ophthalmologist, we found out how bad it was and the Dr. said she would get us the refferal to get a CTScan or MRI to rule out a Tumor. She quickly found out that the process was going to take a week or more for that, so she told us to got to the ER. Fortunately, it seems Medical thinks the ER visit was justified. I have no idea what we will do if they don't since it was an extremely expensive visit.

Now we wait for the next refferal. I just got off the phone with Medical and it seems there is another paperwork snafu........

We don't know how much Medi-cal is going to cover in the end. The scary part is that as of right now the treatments are life long. Which is going to make things difficult once we have a decent income level because most insurances will look at it as a preexisting condition.

The Get Well Fund is not Melissa's idea (she doesn't really like it, actually...) I figured that this is both going to become a major problem and because as students we are just barely making it as is. With her needing me more at home I will have less time to do the temp work I have been doing. Please don't feel obligated. Give if you can and be blessed in doing so.

Luke

To donate to the help Melissa Get Well Fund:

Pseudo Tumor Cerebri

The Pseudo Tumor Cerebri...PTC for short. What is it really?

You know how SPAM is Something Posing As Meat, well this is SPAT, Something Posing As a Tumor. This malevolent disease somehow invades the spinal column and brain areas, but cannot be seen. It wreaks havoc that closely resembles the symptoms of a Tumor. Ergo the name Pseudo Tumor.

The main symptoms are:

• Severe Headaches
• Blurred and spotted Vision
• Complete whiteouts of vision
• Forgetfulness
• Loss of concentration
• Tiredness
• Dulled hearing

It causes Papillary Edema from the severe cranial pressure, which is basically excessive pressure on the eyes where the retina actually becomes misshapen. This is what causes the many eye problems.

Essentially, it causes an extreme build up of Spinal Fluid in the cranium and spinal areas. This problem mimics a tumor in all ways except the part where you have a visible mass in your head that can be bombarded with radiation or removed by surgery. Therefore they can only treat the symptoms of this insidious disease. There is no cure as of right now. It is a life long condition that requires 1 of 3 options or a combination of options:

1. Medication
2. Lumbar Punctures
3. A Shunt

The medication is the most benign. However, it is also the least effective. The medicine basically dehydrates the spinal fluid so that there is less of it, so that pressure is relieved. Unfortunately, this can also leave the person slightly dehydrated and this drug interestingly enough also can cause drowsiness, loss of concentration and forgetfulness. Yup, you are reading that right. It causes some of the same symptoms as the PTC. Melissa is about to go insane from how much info she has to process more than once to remember it. And it now seems to have stopped helping her headaches.

The Lumbar Puncture (LP) is just the new name for Spinal Tap. They are no nicer than before. It still involves jabbing a giant needle into the person's back. They do this to remove some of the Spinal Fluid to relieve the pressure. This helped Melissa when she got one the day we were in the ER, but it's only temporary. And as you probably read, because of her Sciatica the procedure is even more pain full than normal because it takes someone really good at it to find a spot that doesn't cause her to have excruciating pain. For some people with PTC an LP every week or so works. For many others it takes a combo of drugs and LP's on a weekly or almost daily basis to relieve the pressure. This aspect is one that scares us the most since Melissa already has severe back problems. The LP she got at the ER made her sore for days. This would possibly mean that she would be in continuous pain.

The final option is a shunt. Basically the operate on the person and put a tube from the spinal column to the stomach. It siphons off the extra fluid into her stomach. This procedure has a high success rate with minimal symptoms. The problem is that shunts are not an exact science apparently. We have found info on people who have had them and everyone has a different experience. Many people have to have them replaced regularly from every 3 months to every year. The operation puts a person on total bed rest for a week. We have met someone who had a shunt for 7 years trouble free. We are hoping that that will be the case for Melissa should she need one.

Luke

To donate to the help Melissa Get Well Fund:

Melissa, my dream, is having a nightmare.

My lover, my wife, my confidant, my dream is having a nightmare from which there seems to be no waking.

She was having these horrid headaches, when suddenly her vision completely blanked out. After much convincing she went to the doctor. He looked in her eyes and said "It doesn't look that bad." He then wrote a referral to a specialist in eyes (ophthalmologist). He could not have been more wrong!

After a week and many calls to my insurance, we finally got the referral. The ophthalmologist, Dr. Lien Nguyen, took one look at her eyes and panicked. She told us to immediately go get an MRI, because she said my wife either has a tumor or a Pseudo Tumor. We were stunned. Of course, our medical insurance wanted to wait a week to get the referral to get an MRI. So she advised us to wait in the ER to make sure we got a CTscan of her brain to rule out a tumor.

We spent the whole day from 10am to 11pm in the hospital, because it was the same day that the dealership in Los Gatos exploded. After so many hours we finally got some good news...it wasn't a real tumor! Unfortunately, this was only the beginning. The key treatment for Pseudo Tumor Cerebri (PTC) is spinal taps, which they now call Lumbar Punctures....(I think Spinal Tap sounds more friendly...)

Because of my wife's sciatica, the doctor had to 'puncture' her 7 times to get the needle properly situated. She was in excrutiating pain. They have now prescribed a medicine to help that has not worked very well.

When we did the follow up with the ophthalmologist, she let us in on yet another scary fact: her head doesn't have a tumor causing the blockage but it is possible that there is a tumor in her spine causing it. So that is why it is rather urgent that she get an MRI. So we can rule that out.

I will keep this updated as I can.


Luke

To donate to the help Melissa Get Well Fund: