Camping with IIH & Wedding Gowns

I've been camping for almost a week now and while my central vision has slowly been getting better my peripheral has not come back at all.

I went to the outlet malls yesterday and man- we rely on our peripheral vision to navigate through stores. I don't think I've ever bumped into so many people or stepped into peoples paths. It was really frustrating to be completely honest.

It's hard to be so tired. I am constantly having to remind myself that I'm not being lazy, I'm recovering from a month of headaches and two back to back eye surgeries. It's hard to be perceived as lazy. It's hard to explain to people that literally my eyeballs ache and I just need to shut my eyes and sit down.

I have more sympathy and empathy and compassion and all those things for people who have chronic illnesses and deal with similar emotions and pain but on a daily basis- for years- without much complaint.

As many of you know I am getting married next year.
I ordered a wedding dress and it arrived mid July. 

They have a 30 day policy that says you have to come
 pick up your gown and pay for it in full within 30 days.

I was freaking out. At that point we had just found
out that I had IIH and needed surgery. 

I couldn't come In and see my dress even
if I wanted to- I was practically blind.

So my mom called in trying to explain my
situation hoping they could give us an extension 

so that I could see my dress when I went in.
And what the lady on the phone said had me close to tears.

Her daughter, 11, just got done going through the diagnosis of IIH. 

She had gone blind in her left eye and
almost lost sight in the right- they didn't act quickly enough.

She told my mom that I needed to focus on my eyes
and get everything under control. 

That there was no rush for me to come in and
that she would put my dress in safe keeping until I was ready.

It was literally like God was telling me directly that
He has everything under control and that I didn't
 need to worry about anything. 1 in 100,000 people
have IIH so it is not common and yet the one person 

who answered that phone knew exactly what we
were going through.
I couldn't have prayed for a better outcome.

I can do nothing but rely on God and trust that He will show me the path that He has in store for me. Whether that be photography or something that's not so reliant on eyesight. I am open to the plans that he has for me.

Thank you so so much to everyone that has said a prayer for me. Its truly humbling to know how many people are praying and I appreciate it so deeply.

To those of you who have a friend or family member who is struggling with their health, don't be afraid to reach out and just let them know that they are in your thoughts. Knowing you have support is everything when you are battling something that is out of your control.

Just my two cents for the evening. Hope everyone back home is enjoying the sunshine!! 

It's been sunny here & absolutely glorious.

Progress after 2 Surgeries

My latest visit with the doc went well.

I still don't have much peripheral vision and I can't see 3-D things anymore & I still have several blind spots throughout my vision. BUT. I did read three more lines of letters on the cart- so now I'm 20-40 or something like that (and I was 20-80 ).

My depth of field is off. My pupils are always dilated and huge- making it bright out all the time. I can't see very well in the dark- actually, I have an awful time seeing at night. My eyes never adjust so everything just looks black.

I have to look at my feet when I walk because I have no peripheral vision on the lower edges of my eyes. On paper it's very interesting to look at. After taking that blinking light test, the results are in the form of two black circles. Sophisticated right? The black circles are my eyes. And anywhere there is color, means I can see light in that spot. Well- the very first time I came in almost 85% of the black circles, were black. That doesn't mean I'm blind and can't see anything but it gives them a way to measure how much light my eyes are processing.


SO. This latest test came back much better- much more color on the black circles. Except in the lower left or right corner of the eye, the corner closest to the nose. If you were to divide the circle into 4 sections, that 4th is all black. Which means I can't see what's at my feet unless I look- frustrating.

I just got way off track. This last visit the doc started wanted to star doing some tests as to why this happened. Typically, IIH will takes years to discover and eventually the symptoms get bad enough & they discover it. Well mine didn't take years. It took approximately 25 days of severe symptoms which means the pressure hasn't been building very long.

So there are two ways this could go. Either it's truly idiopathic & there was no reason we can understand. Or there is something wrong with my brains drainage system of cranial fluid & I could have a block. She became kind of elusive at that point, meaning there are probably several scary scenarios that could result if there is a clot in my brain. So I go in sometime mid August for an MRV.
Which apparently is just like an MRI except it's shorter (that's good news) & it's an image of the veins in the brain. I'm praying that nothing serious will show up on the scan but who knows. More answers just gives us more room to move forward.

So that's the next step. 7 more weeks of healing for the optic nerves, at which point we'll be able to tell how much permanent damage there is & and MRV in August. Thrilling right?

In the meantime, I'm hoping to be seeing well enough to get back to work by the end of August. Even if I have to watch where I walk, I can still see good light and I'm pretty sure I can still capture a great image. I'm at the beach for a week. I'm hoping to pick up my camera for the first time since all of this started. I would love to get back to photography.

My Story

The Diagnosis

June 14th was the day that the headaches started. Thank you social media for reminding me because apparently this was an important date. Roughly 10 days later I go in to see my doctor. "I have a headache or a migraine and no I've never had them before and yes it's been over a week and yes the light hurts my eyes and everything sounds loud. Oh- And I can't see. Like really, everything is blurry, I can barely read and it's like I'm going blind." A few tests and an MRI later she came back to me saying I'm not really sure what's going on but it may be a sinus infection & a tension headache so we'll put you antibiotics aka horse pills. I mean really? They have all this technology yet they can't make pills any smaller?

I don't remember exactly but I visited her twice more and the ER twice more. The first ER visit was awful. "Well, unfortunately headaches are one of those mysterious things that don't respond to pain medication." So he gave me this "migraine cocktail" which included a painful shot and he said that sometimes the cocktail helps and sometimes it makes it worse. Well he was right about both. I could sleep that night, but the pain the next day was worse, which I didn't think was possible.

Day 22. I still had a headache that was putting me on my back in a dark room quietly listening to HGTV trying to get through the day. And my vision was getting worse. By the afternoon I was in tears and couldn't handle it anymore so trip #2 to the ER began. New doctor, same info, except this time he looked in my eyes. For some reason he thought that a spinal tap would be a good route since it was day 22 and we still had no answers. And yes, I did just say spinal tap- let me tell you, they are not fun. The ER doctor tried the first time and after several pokes said "Well, it [cranial fluid pocket] should be there.... We'll send you up to radiology to get it done." So up we go to radiology where it took them multiple tries even with the xray of my back telling them exactly where to poke. I kept hearing, "I just don't understand why this isn't working.... let's try a different needle size." My back was sore for several days.

Results from the spinal tap- no meningitis, off the charts pressure, but other than everything looked normal. Thank God that the neurologist that was on call that evening looked at my chart and said that I should go see a neuro- opthamologist. Between the extremely high pressure, my symptoms, and sometimes about my eyes he directed us towards Dr. Falardeau. She was booked 2 months out. She had a cancelation the following Wednesday (this day is Friday). The spinal tap lessened the headaches and I couldn't wait to see what she had to say- I wanted to know why I was half blind.

Wednesday came & I did their eye tests, most of which I failed. Test after test they brought me I was failing and it felt miserable. It was like going in for a final at the end of the semester to a  class I'd never been to, not able to answer yes to a single thing. They have a light test where you close one eye and focus on four green dots in the center of this machine. Every time you see a light, whether dim or bright, fast or slow, push the button. I pushed the button maybe 15 times- the test is almost 7 minutes long with lights going off every few seconds. Nothing like taking that stupid light test to really confirm that your vision is going.

She came in & after looking at the results explain that I have IIH or idiopathic intracranial hypertension. In other words, there was too much cranial fluid pressing on my optic nerves & if we didn't do something fast, I would be facing serious permanent vision loss. Well- that was news to me. I though I had a bad headache which caused some funny things to happen with my vision and it would eventually work itself out. No.

I have IIH which is a lifelong condition and can come back at any point.

______________________________________________

The Treatment

Day 27, headaches are gone but now I can't see much and I was just quickly diagnosed with IIH. She [Dr. Falardeau] had no doubt in her mind that's what I had. She said we should take an aggressive approach to treatment in order to drain the cranial fluid and get the pressure off my optic nerves. I was thinking- GREAT. I would love to be able to see everything clearly & be able to WORK. I miss photography- more than I thought I would. She started talking about medications that would make my toes, fingers, and lips tingle & she would start me on a dosage that was double the average. (The tingling- not fun.) Then she mentioned the word surgery.

It took every ounce of my being to sit there, nod my head, and not crumble at the seams.  It is day 27, I am tired. I am weary. I can't see much & I can't do photography. And you she just blurted those words out like they were an everyday thing. (Side note- she's amazing, and was not insensitive, just being realistic.) She said with cases as severe as mine, surgery is the best way to relieve that pressure quickly before it does anymore permanent damage. Well who was I to say no to the lady who was trying to save my eyes. So two days later, friday morning, I went in for surgery on my left eye & the following thursday they did surgery on my right.

Today is day 44 & my eye sight has improved but there is still a long ways to go. God has blessed me and my family throughout all of this. I wasn't nervous for the surgeries, I just wanted to get through them and start healing. God truly carries you through the tough times in your life and I have never seen him so present & at work in my life than now.

I get up everyday hoping that the ceiling will look clear. Hoping that I can when I sit up I'm not nauseous. Hoping that my peripheral vision returns (it's still largely gone at this point.)  I wake up thanking God that I'm not totally blind, that I can still see my family, that I can still see blue skies and sunsets, and that things are slowly  getting better. Don't get me wrong- I have my bad days. I have days where I don't want to get up. I just want to cry. Because I'm tired of being not being able to cook for myself or see where I'm going. I'm tired of relying on other people to get through my day. I'm tired of not being able to photograph people and work.

I am weary after 44 days of pain and frustration and bruises from bumping into things. But I'm alive. I am healing. I have family. I have my fiance. I have support. I have great medical insurance that will make this expensive instead of outrageously expensive.  I have God. And at the moment, I have nails that are perfectly done because my amazing mom treated me to a manicure.
I have learned a lot through this & I am no where done learning & unfortunately, I am no where done dealing with this.