My Blue Room

Dad made plans to visit this week. He is currently en route on an Amtrak train to Winter Park for tomorrow 13:00. Over the last couple of weeks, we've been getting ready for his stay. I thought about the room he would be sleeping, and how it was sort of an office, but not really ready for guests. It was pink, as is much of the house, but it had a different personality with the carpeting - and pink just didn't work in here, IMHO. So I spent a good week or two cleaning up and painting. Steam cleaned the carpets and vacuumed to get it really clean and fresh. Then I selected a Valspar metallic paint called "blue sateen" and spent 3 or 4 days painting. Base coat was easy, but the metallic top coat was a challenge, and required 2 or 3 coats to get right. The third gallon Lowes comped us on, when I called for advice they gave me an RA#... saved me $42 for that can. It wasn't easy, but I think I got it to look pretty good. Check it out with the fish-eye lens! Needs some art and mirrors, but the room itself is much more accomodating and now that I have the USB turntable and the Bose speakers all set up, this space is really, really sweet - warm and cozy, relaxing. Dad is going to love it.

Slipping Away

In 2007 I noticed a fixed visual disturbance in my left eye just below my center of vision. It looked like the kind of spot you would see when looking at the sun for an instant and looking away. But the spot never went away, and it annoyed my reading on the computer monitor. So I went to the eye doctor and he dilated my eyes. "Well look at that, isn't that interesting. You have what's called a cotton wool spot." He told me not to look it up online because I would needlessly scare myself shitless, and immediately sent me over to Central Florida Retina to have them investigate further, while my eyes were still dilated.

They performed a fluorescein angiogram and scanned my retinas. Indeed, a single Cotton Wool Spot. Doctor there was great. His recommendation was to wait on it to clear, which took a few weeks. If it goes away and no more appear, we need not worry. So I go about my life and it's just a memory.

Tests were inconclusive and since it went away, it was chaulked up to be possibly inflammation from a virus or something temporary.

At the time I was not really clear on what the condition was, the paperwork was checked off with "branch retinal arterial occlusion". But that was only because there was no option for "cotton wool spot".

Dealing with dull headaches in my eyes for years, multiple times a week. Some were migraines, or whatever they are they are bad enough, some make me feel very sick and not even a pillow feels good. I went for all kinds of tests to see why I got these, even an MRI of the brain back in late 2006, but nothing unusual. So I started taking Maxalt.

Also dealing with random severe allergic reactions bordering on anaphylactic shock. Allergist tells me severely allergic to malt, mildly to walnuts and oysters.

So I was out looking at houses earlier this year, in April, when I noticed another one of these spots. So I went back to the eye doctor, and again he sent me immediately over to Central Florida Retina. This time they wanted me to get tests to find the underlying cause of the inflammation. They recommended an internist.

So I transferred from my primary care physician to this internal medicine doctor from Florida Hospital. He first gives me a CBC and a physical. All normal except slightly lower than normal white blood cell count. Nothing to be concerned about.

Next we did an echocardiogram. Slight mitral valve prolapse. No evidence of blockage.

On my own, I went on recommendation to see a phlebotomist at the Mid-Florida Cancer Center. We looked into protein disorders, and coagulative disorders, and threw in something for Lupis as well. It took a month to get results, but all were negative. It took 6 months for the results to be sent from the hospital to my new doctor.

My situation with the eyes was recently noticeable again. I was now experiencing at least two of these cotton wool spots in my eyes. One is in the left eye just to the left of where I read, which creates a little bit of a disturbance in reading.

Again, these should clear in time, but the cause is some underlying condition.

This is the deal, I was confused for a while what it was I really have in my eyes... but the doctor called me back after tests for Hypercoagulability syndromes, Protein S/C deficiency, etc came back negative.

http://www.odpalace.com/cottonwoolspots.asp

Wikipedia describes these as:

Cotton wool spots are an abnormal finding on fundoscopic exam of the retina. They appear as puffy white patches on the retina. They are caused by damage to nerve fibers. The nerve fibers are damaged by swelling in the surface layer of the retina. The cause of this swelling is due to the reduced axonal transport (and hence backlog of intracellular products) within the nerves because of the ischaemia.

Does that not seem like an oxymoronic definition? Nerve damage caused by swelling, swelling that is is caused by "reduced axonal transport" due to the restriction in blood supply that causing the nerve damage that is causing the swelling that is causing the backlog, and so on. Is that not some kind of feedback loop? And how does it happen in the first place?

So I get a letter in the mail 2 weeks ago with a prescription for more bloodwork. This time viruses are on the list. Ironically, this all is happening just after I got my new glasses from the prescrip I recieved in April. The glasses were not made to spec, and I got intense eye strain from them, headaches, etc. Maxalt to the rescue. I'm expecting my glasses back by tomorrow, and a follow up with my doctor as well...

Expecting results for cryptococcosis, coccidiomycosis, toxoplasmosis, HIV-1, CMV virus, RPR (rapid plasma reagin) - think this is due to some conditions related to Lupis causing a false-positive result for syphilis. But I'm almost certain I've had that and the HIV test done a couple years ago by the other doctor for this issue, but of course it was negative. Also expecting results for HSV 1, ACE Level (Angiotensin-converting enzyme), HbA1C test for diabetes.

As you could imagine, I am NOT looking forward to finding out the results. At the same time I absolutely need to know as soon as possible. This has been going on for too long.

Carissa thinks it is a side effect of the very same Maxalt which, as I mentioned, I use when I get bad headaches... these headaches mostly affect my eyes, one side of the head and with nausea. They are not always terrible headaches, but even if slight I have a sense of non-well being when I get them, and Maxalt clears it all up otherwise I would be that way or worse all day when I need to work and stuff.

Maxalt has some vascular side effects but at no time in any study did it result in Cotton Wool Spots. But since I have been taking the medication for about as long as I have had these, longer I believe, anything is possible. That said, I'm stopping the use of Maxalt as a precaution. This will suck but what can I do.

I otherwise feel OK mostly I guess, I have no idea what I should be feeling given the long list of morbid conditions this thing typically is associated with. After 2.5 years, I would probably be dead by now. So maybe it will all turn out alright. There is always that one word in the list that is on my side... idiopathic. Let's hope for that one.

Finally, I will write here what I wrote on paper tonight. As I know my vision is slipping away.

Need visual field test.

Amsler Grid shows degraded scattered in left eye all over the field of vision. Upper right eye has a clearly defined region that is grainy blindness. It is a couple inches side to side and a half inch thick, but completely undefined and grainy.

My eyes are confused as one eye sees what the other cannot, so it is scattered 3D and 2D in pinpoint spots everywhere and concentrated in these areas, which are completely non-uniform.

It's getting more noticeable when reading. It's not as bright, or as comfortable as it used to be. Words or letters off from my center of reading are hinting undefined, grainy shadows, but it is hard to describe because it is like what you see behind your head, not black, but just not seen at all. And it is not defined, it is scattered. I'm not really sure what I cannot see, or if my center of vision is affected at all... maybe it is.

Stopped taking Maxalt indefinitely. Cut back on aspirin.

Low blood sugar hit me tonight. Arms are hard to lift. Ate half a banana, apple juice, mozzarella, turkey breast. Am still tired. But feel a little better. Headache is lifting a few hours later. Nausea or malaise not really bothering me now. But I should stay up to digest so I do not feel sick in the morning. Never eat before sleep. Especially sweets, which I rarely eat anyways because they make me feel sick.

Sometimes if I eat before sleeping, I wake up with what feels like a bad hangover. Never eat after 8pm unless you feel like I did tonight, hypoglycemic.

Headaches, dull pain behind the eyes, nearly daily, but some are bad and Maxalt always takes them away within an hour or two.

I cannot risk my vision though, I have to stop the Maxalt indefinitely in case it is causing these cotton wool spots.

My family is depending on me. I'm 37 years old. Just bought our first house, trying to solidify my career.

I'm a visual person, artistic... video, photography, drawing, painting...

This is my tragedy.

I call the retina place and the person there is nice, but asks me why the need to see so soon, and I tell her the cotton wool spots and she asks - but is there anything new? It's not an emergency. So the best they could do was 8 days out. Even if I need these checked out yesterday.

DO THESE C.W.S. SCAR MY RETINA?

I should have had ALL these tests by now, or 2.5 years ago!!

Why did it take this long?!

I need a full review what has and has not been done so far.

Must find out the underlying cause because precious time is passing.

All these conditions on this list are really terrible sounding, and I don't want to die not knowing what killed me... and leave my family lost in a mess trying to pick up the pieces and live life without a father and husband and provider.

I know one thing. I'm not getting better.

This is adding up and I'm not willing to take it any longer.

I need ALL possible remaining tests done ASAP - anything and everything. Just write me up a prescrip and let's get on with it before it is too late.

Please, please help me.

Hazard Insurance - The Case of the Missing Balls

Before we could secure financing, we had to find an insurance carrier for the house. It was a hellish experience. Over and over again, not one company had the cojones to step up to the plate. Too far from the fire station and hydrants, can't be seen by neighbors, can't be seen from the road, etc. Fortunately it is just under 5 acres, and most of the time, they go as the crow flies to get to the fire station. But anyways, it was a lost cause... until I mentioned all of this to my loan guy. He was always very helpful, did an excellent job for us. So his contact in Port St Lucie was able to find us a policy through Olympus for $1,183... not bad I thought. Another agent wrote me an e-mail stating that it sounded great now, but once they send out the underwriter to inspect, they will cancel it. Then I could go back to her to get Citizen's insurance. Well I had to take a chance.

So a month passes and we are finally settled into our beautiful new house in the country... and I'm making all these plans to pay down the principal and budgeting... and all of a sudden we get a notice of cancellation effective 12/15!

"Open foundation, house above water, cannot be seen from a paved road or by at least two neighbors."

I shouldn't have been surprised. But this sucks. So I have been trying to find an alternative, with little success. Got a quote from Safe Harbor for $1,586. Citizens is our last resort and is over $1,700.

Then the original agency called having found something that was LESS than Olympus! I was so excited. All I had to do was send some photos out to be safe...





These show the porch and beneath, how the actual load bearing walls extend down to an enclosed crawl space.

5 days pass and I get the following response: "I spoke to (the agent) at Cypress and she stated that they will consider to cover the property but you have to enclose the front part of the house. Let me know if you would like to go forward with the policy."

My response: "I'm not sure what this means. The porch/deck is external, not part of the sq footage. The front part of the house is enclosed."

Their response: "The entire porch needs to be enclosed. You have to enclose it with block. (the agent) stated."

What choo talkin' bout Willis?!

My retort: "It's been 5 days since I sent the photos to you. We are one week from being uninsured. And they want me to do what? That is unbelievable. Why on Earth would I want to do that? It's an external wrap around porch. It's not part of the inside of the house. It's external, and it will stay that way. There is no reason to enclose it when the actual walls of the outside of the house are solid and fully enclosed. Add to that the base of the structure is enclosed and following the exterior walls above it.

This makes no sense to me. It seems like another excuse to get out of having to cover the property, no one wants to do it. Why do I have to spend tens of thousands of dollars to destroy the character of the house in order to protect an external porch and get affordable insurance?

Excuse me for venting but this is --. What could the risk possibly be to the porch?"

Then I apologized for my tirade and offered more photos. And more specifics about which are the load bearing walls. Everything was done to code.

So we'll see. I'm leaning on the $1,586 policy and then will try to find something cheaper. But the clock is ticking.