Saturday, September 27, 2014

Lasik Day 1 and 2 Experiences

Today is the day after I had Lasik surgery.  I know I have had a few people on Facebook asking me what it was like as they are on the fence.  Right now I'm less than 24 hours after surgery and am not about to tell you emphatically to do it, because I"m not fully healed yet and that wouldn't be a fair assessment of the procedure.  Mostly right now I want to outline what happens and my experience.  I'll do another blog post in a couple of days as my eyes continue to heal.

I have been considering Lasik for years and years.  I was always too chicken shit to do it though in the years that we had the money to do it, and often we didn't have the money for something extra like this.  This year, we have the flex spending dollars left and I ran out of contacts, my glasses prescription was old and it seemed like the stars aligned.  So I scheduled some consultations (2 actually) around Denver for the procedure.

I finally settled on Icon Lasik because John Elway went there.  Ha ha, not really....actually they had the best price and they seemed very knowledgeable and I just had a good feeling about them.  The other place I tried was in Belmar, they wanted twice as much and just didn't get a good vibe from them.  I didn't bother with a third because the battery of tests they put you through to determine if you are a candidate is to put it mildly, exhausting.  It takes about an hour and a half and they dilate your eyes, then do something to them where you feel very far sighted and near sighted.  I couldn't see and ended up having a bad headache the rest of the day...both times.  Both places said I had no astigmatism, had very little correction (-2.50 and -2.75), had very thick corneas (this is a good thing) and should get better than 20/20 vision with Lasik.

I scheduled my appointed for 2 weeks out with Icon.  The last 8 days or so, I had to wear only my glasses as contacts can reshape your cornea and really botch the surgery.  I can tell you, wearing my glasses for a week really made me anxious for the surgery.  I have bad light sensitivity (a Lupus thing) and not being able to wear my sunglasses was really painful.  Plus I had a hard time adjusting to not having peripheral vision and the prescription was new (they put new lenses in since the lenses that were in there were really old and out of date).  Anyway I just hate glasses, not sure how people who wear them put up with them so I was excited to ditch them forever.  Contacts never honestly ever bothered me, however the week or so I went without them, I realized how bad they are for your eyes.  I had to have tear duct plugs put in before my surgery because my eyes were super dry (the plugs make it so less of your natural tears leak out, and remain in the eye instead), but I never could feel it because my corneas were too desensitized from the contacts to feel that . Then 2 days after stopping wearing them, my eyes became very bloodshot and I found out that's because contacts don't allow much oxygen to your eyes, so now that my eyes were getting a lot of oxygen, the blood vessels basically freaked out.  So I was okay to be done with those too.

Yesterday I went in at about 11 for my 11:30 surgery.  They redid many of the tests to ensure they got it right the first time, and especially wanted to remap my cornea since the shape had changed because the first time I went in, I had been wearing my contacts that day and as I mentioned before, contacts can reshape your corneas.  I went back to the pre-op area and they gave me Advil and a Valium and numbing drops and I waited about 10 minutes for the drugs to kick in, then they took me back.  I met the Dr and nurses and they explained not so much what would happen but what I would feel.   I already knew what would happen since I had googled it so I was okay not having that explained again.  They handed me a stuffed monkey named Max (cute huh?)  and opened my eyelids with this plastic thing.  They also numbed the crap out of my eyes, she was just spraying the bottle in both of them, they want to be totally sure you feel nothing.  The Dr. told me I'd feel a lot of pressure, which I did, then more pressure.  I didn't feel anything but pressure, kind of like someone pressing hard on my eyeball.  It didn't hurt and I wouldn't even say it was uncomfortable.  The weirdest part of that was when my vision went out for a few seconds, it faded to grey.  But he told me that would happen so it wasn't that bad.  Then they did the same thing to the other eye.  After the pressure thing was done (this by the way is where they cut the flap so they can access the cornea for cutting - and I opted for the blade less laser cutting machine which cost a little more but supposedly creates a thinner, smaller flap which makes it heal faster), they took me to the laser machine.  I was very wobbly and couldn't see a damn thing so they helped me to the machine.  The nurse put more numbing drops in my eyes and the Dr. put another clamp thing on my eyelids to keep them from blinking.  This, by the way, was my biggest fear but it wasn't bad at all.  You actually even still feel like you are blinking.  You aren't, but the sensation is there.  So they laser one eye and it takes maybe 20 seconds.  The worst part of this was the smell of burning hair. That's actually just your corneal tissue being burned away.  Once the laser is done, the Dr. replaces the corneal flap which was also weird.  My vision kept going in and out and even though my head and eyes were stationary, I could see things all around the room as he was moving it back in place.  They did the same with the other eye and then I was done.  The ENTIRE surgery was 20 minutes.  The actual messing with my eyes was maybe 4 minutes per eye, and that's probably an over assessment.  It's quick and painless.

I went to the waiting room to sit for about 5 minutes to make sure I wasn't going to throw up (I guess they have some pukers, I don't know), then we went home.  At this point the Valium really had kicked in and I just wanted to sleep.  The numbing drops were also wearing off and it felt mildly like I had an eyelash in my eye.  I went home and put the happy drops in (more numbing drops they sent me home with) and fell asleep almost immediately.  I woke up less than an hour later because the kids came home and wanted to make sure I was still alive.  I opened my eyes and felt pretty bad pain.  I did more drops and my medicated drops and went back to bed.  I kept waking up here and there but really didn't want to open my eyes.  At times I forced myself to to put more numbing drops in.  Around 4 I got out of bed and had a snack and felt OK.  But every 10 to 15 minutes had to put more numbing drops in because my eyes would start to burn and sting.  I definitely didn't have good vision still either, it felt like I was looking through plastic wrap.  So that was disorienting and more reason why I didn't feel like opening my eyes.  At 5 I went back to take a nap, and woke up at 7 and the pain was gone.  My vision had cleared a little too, but definitely still not 100%.  I went to bed at 8 because staying awake seemed too annoying, I couldn't watch TV or focus on anything so sleep seemed easier, and woke up this morning at 6 to get to my 1 day appointment.  I was hoping to wake up and be able to see really well but that was not the case.  Everyone makes it seem like you just wake up and have better than 20/20 vision, but mine was still slightly blurry and still had that plastic wrap over everything haze.  I also woke up feeling a little nauseated but that has nothing to do with the surgery, I just forgot to eat yesterday.  I was too nervous before the appointment and too tired/too much pain to worry about it after.  I still drove myself and was grateful it was slightly before sunrise because the sun is so painful.

Still less than 24 hours after surgery, I am about 20/30.  That line below, 20/25 I could read with both eyes, but was pretty tough to see the 20/25 line with each individual eye.  This is about the best vision I ever had with contacts/glasses so it can only go up from here.  I was never 20/20 with corrected vision.  Not sure why, just could never get there.  My flaps are healing nicely and the Dr said I am right on track, he said there was significant dryness, swelling and inflammation so he said Advil at least all day today and the artificial tears for the next week .  He said the haze and halos I see will go away over the next few days but it might take weeks to months for the halos to go away, but they will too.  I have another appointment in a week, hopefully after that I can wear make up and do my PiYo again :)

Bottom line, the surgery is no big deal.  After surgery hurts a bit more than people would have you believe, and I know I have a high pain tolerance so I don't think it was "just me".   Oh and you have to sleep with these annoying and very sexy goggles so you don't accidentally rub your eye in your sleep which is a HUGE no no.  Also why makeup is not allowed nor is any kind of contact with your eye especially in the first week.

I'll update soon with how I'm feeling 24 hours after the procedure.

Friday, September 19, 2014

Week in Review and Random Thoughts

I really want to blog more.  I have so many wonderful ideas and thoughts that I know you all care so much about (really I am just bored a lot and it's a means to entertain myself with my randomness).  Really though, I regret not blogging through more of my kids' childhood.  So many moms do that and I think it's a cool way to look back at your kids' lives when they're grown and out of the house and you don't remember the cute things they used to do or say (like how Abbie says "eyebrown" instead of "eye brow" and Alex calls "spearmint" gum "experiment" gum and the way he cuddled up with me last night and told me I read the best stories and I was his favorite mommy ever).
















Apple craze 2014.  I do not get it.  Seriously.  This is not a bash on Apple.  My first smart phone was an Apple and I loved it and I still think it's an amazing product.  I had a 3, 3G, 4, 4S and a 5 before I saw the light and went to Android , mostly because I wanted more customization, more options and less "big brother" on what I'm allowed to download and what I am not.  What bothers me with Apple, while they were the original pioneers of today's smart phone, they act like they come out with this technologically advanced new shit every year or two, and Android users have had it for years!  Larger screen?  Check, I've had that for 2 years.  Predictive texting?  Check.  It goes on and on.  Really I don't understand why people are sleeping outside, waiting in days long lines to pay $600 (WITH a contract) for something that's been out for 2 years + already.

Source:  HuffPro.com

This morning Abbie made the comment that she works harder than I do and has a more stressful life.  My knee jerk reaction was to dismiss her, I'm an adult with a lot of damn responsibility and stress..she's 8!  Her biggest concern is whether to watch SpongeBob or play Minecraft in her down time.  Whether to choose pizza or mac and cheese for lunch.  Am I right?  Actually no, I'm not.  I thought about it for a few seconds and agreed with her.  I told her, actually Abbie, while your life may not be MORE stressful than mine, it's probably equally as stressful, we just worry about different things.  And you're right, you do work as hard if not harder than I do.  She goes to school for 8 hours a day five days a week plus does on average 2 hours of homework a day, 6 days a week.  Using my archaic math skills (more on that soon), she's in school about 40 hours a week.  Then she has 12 more hours of homework on top of that.  So that's 52 hours a week she's "working".  Then add in the stress of constantly being tested, constantly having to learn new things, constantly being criticized for her work (daily grades on returned papers), and just the simple fact of learning how to be an overall decent human being, and yeah, that's pretty damn stressful.  It's a part of being a kid, no denying that, but any adult that says kids are on easy street need to give their kids more credit.  I don't even remember the last time I worked a 52 hour week  and was constantly being reminded how to behave and constantly being criticized and evaluated on my work product.  (I do actually remember, it was a year ago when I worked for the psycho at the flooring company, and I almost had a mental breakdown).  Think about it.  Anyway she wasn't expecting me to agree with her and was happy that for once, I listened to her and respected her opinions.  Parents should do that more often I think.

Speaking of homework.  This could, should and will be a separate blog post, but OMG, the homework.  It's insane.  Insane can't describe it.  It's not even the quantity of homework that bothers me, although that's bordering on ridiculous as well - 2 hours a night for 8 and 9 year olds?  It's the quality of it.  Abbie brings home these math worksheets with no instructions whatsoever and I just sit there for a half hour looking at it trying to figure it out.

Stuff like this:

Source:  National Review.com


And this:

Source:  Truth in American Education.com - although I could have ripped this out of Abbie's math workbook 2 weeks ago


I have an advanced degree and a certification in Accountancy and I do a lot of math every single day, and I cannot do this math people.   What's worse is when my daughter looks at me, someone she used to think was smart and someone she used to look up to and she calls me dumb because I can't do 3rd grade math.  And I agree.  I feel fucking stupid that I can't do 3rd grade math.  Instead of bonding or God forbid, doing something fun, we both end up in tears over it until daddy gets home and he is usually able to muddle his way through this garbage and either check her work or explain it to her if she gets it wrong.  It's beyond frustrating.  I'm not an old fogie who is against change or new ideas, but to completely revamp the way things have been taught since...well since the beginning of time, and create this "new" way that is so nonsensical that not even the most intelligent people can figure it out (I'm not saying I'm intelligent per se, but I have rocket scientist friends who don't  get this crap either).  Why I ask? Why??  As though being a parent isn't hard enough, now we have to pour through these hieroglyphics to try to figure out the new way to determine what 6+6 is because simply adding the numbers isn't good enough anymore.  I fear what the future holds because she's only in 3rd grade and I already can't help her with most of her homework.  Regardless, we're putting her in tutoring because she's struggling so badly with it and her self esteem is shot because she thinks she's "stupid at math."  Good job government.  Thanks.  This one size fits all curriculum is sure working out really well for my daughter.  And no, I by no means blame her school or her teachers for this.  They were forced into it and had to learn it too.  I feel really bad for the teachers who had to revamp their entire curriculum to support this new way of learning.  I'm not a fan.  But it is what it is and looks like I'm repeating 1st and 3rd grade for the time being.  Although I can do 1st and even 2nd grade math, go me!  I'm struggling in 3rd grade though.  

I hate working downtown.  Have I mentioned that?  It's a disgusting, dirty place that's impossible to get to...or to leave.  Nothing good about it to be quite honest.  Except for the happy hours.  The happy hours are good.  Wish I could go to more happy hours but I need to spend my evenings crying over Common Core homework.

I'm getting Lasik next week.  In preparation for that, I have to wear my glasses for a week to let my eyes "heal" from the contacts - I never wear my glasses except for when I'm deathly ill and even then, usually I have my contacts in.  You know what's gross?  Today my eyes were totally bloodshot.  I called the ophthalmologist and I find out it's because my eyes have been so oxygen deprived from wearing contacts for so long, that now that they're getting oxygen, my blood vessels in my eyes are becoming hyper-stimulated to it.  He said it will correct itself in a day or two.  I did some Googling after that and didn't realize how bad contacts really are for your eyes.  All the more reason to get this surgery!

I really need a better diet.  Not to lose weight.  Since I got sick, I actually stopped caring about my weight and a miraculous thing happened.  I started losing weight and now I'm maintaining it with no issue.  I'd like to lose a few more pounds, sure, and I'm moving toward that goal by doing PiYo (I still can't do strenuous exercise or anything that impacts my joints, my joints hurt too bad all of the time to even consider high impact anything).  But breakfast is usually whatever scraps my kids don't eat (don't judge, you do it too).  Lunch is a diet Pepsi and some crackers and maybe a cheese stick for some protein if I'm feeling really healthy.  Sometimes I'll go on a Starbucks run and get a skinny frap.  That's the only coffee I've been able to handle since getting sick...my heart still beats weird and I usually feel like I'm having a heart attack at any given moment and the fraps don't have as much caffeine and don't taste like coffee (I've also totally lost my appetite for that flavor, it grosses me out now).  Then I will try to eat a small salad with whatever dinner I'm making (which is much healthier than my aforementioned choices because my family eats it and I'd feel like a bad mom if I fed my kids Cheeze Its for dinner).  I just have no appetite...still.  Nothing sounds good except for crackers.  It's rather annoying.  But I really do feel like Cheeze its for lunch and scraps of Eggo for breakfast are not the fast track to health.  I need to do better.  No wonder I have no energy all day and feel unmotivated all of the time at work.

I guess that's it for random thought Friday.  If I keep going I'll have nothing to blog about next week.








Thursday, September 4, 2014

Remembering Caroline

I am not honestly sure what got me thinking about her today, perhaps it was the lady I saw downtown walking with a baby in a stroller that looked just like her.  I think of her often though, especially lately for some reason.

She was my role model at 19.   I wanted to  be just like her when I grew up.  She is the one who encouraged me to go back to school and finish my Bachelor's Degree in Business.  She took me under her wing and taught me so much about business, work culture, and life in general.  She was like a big sister, a bit too young to be my mom as she was only in her early to mid 30's...about the age I am now.  She was my first boss.

I remember in 1998 when she got pregnant with her first child, a son, Owen.  She took a lengthy sabbatical after he was born, but would still often bring him into the office and I'd babysit him while she was in power meetings with the other company executives - hey, duties as assigned right?   In late 1999, she became pregnant with a second child, a girl, Sophie.  I never had the opportunity to get to know Sophie as well as I did little Owen, as I quit in 2000 to pursue my education full time.  I had heard she quit as well to become a full time mom, her husband made plenty of money as a lawyer and she wanted to spend her time volunteering and raising her kids.

Caroline and I didn't really keep in touch after I left the company.  She was busy with her new life as a mom.  I was busy with my new life as a wife and trying to finish up those difficult last couple of semesters in college and trying to find a job.

Several years later, in 2008, I was chasing after a toddler Abbie, feeding a baby Alex and the news was on in the background.  I half-heard a story about a family that was tragically killed while vacationing at a friend's cabin in Aspen.  I caught the names of the kids, Owen, 10, Sophie, 8.  I thought, how strange, that would be the ages of Caroline's kids, and the same names too.  A few days went by and I couldn't stop thinking about that news story and decided to do a quick google search on Caroline.  She became a bit of a socialite, I knew that much, and I knew there would be a lot of results.  The first result I saw shocked me to my core.  That family who died in Aspen was Caroline, her husband and her two children.  They died a pretty gruesome death from carbon monoxide poisoning.

http://blogs.westword.com/latestword/2010/08/carbon_monoxide_lawsuit_filed_on_behalf_of_the_late_beautiful_lofgren_family_a_photo_gallery.php

After the shock wore off, seriously it was like the world went silent, my heart stopped beating and I just felt pure grief and agony for this family.  I shot off an email to a lady I worked with at the company who I knew still worked there and asked her if it was true what I was seeing on line.  She said that it was, and they were all as devastated as I was.

I guess I think of her a lot as I am about the age now that she was when we first met.  My kids are about her kids' ages when they died.  I'm still not the power executive that she was, but I am not sure I want that life anymore.  When I was 19 it seemed glamorous and perfect, but now my lowly 9-5 accounting job suits me just fine.


She was truly one of those NICE great people you just couldn't help but admire.   One of those people that nothing bad could ever happen to because she had EVERYTHING but was still likable and approachable, and did I mention NICE?  I guess the learning experience in all of this, besides have a carbon monoxide detector in the house, is just to appreciate life.  Because even those who seem to have it all, can have it all taken away in a heartbeat.

Thursday, July 17, 2014

Answers...

The evening after my last post, I went to the hospital as instructed for more tests.  I had a Brain MRI, a Chest CT and two bags of Levofloxacin.  But before I got to all of that, I decided to make life really exciting and fainted as I was walking to the admission desk.  I got a pretty "fall risk" bracelet and free rides in wheelchairs all evening.  I was sent home though, my vitals were good and they said I was just dehydrated...which was BS because that wasn't the first time I have fainted recently.

I also got a 10 day prescription for the Levofloaxcin and am on day 8 of that.  It has really helped to knock this crap out of my system.  It's a very strong antibiotic, it's also used for anthrax and the plague.  I will likely be put on another round of it after this.

Anyway I did hear back from the ID Dr. two days ago and she said I have endocarditis, encephalitis and my left lung is 75% full of bacteria and other bad fluid.  I think that has resolved some since I had the Chest CT because my cough is much much better.  Regarding the endocarditis (which if you didn't click the link, is an infection of the inner lining of the heart) I have an appointment with a Cardiologist to talk about as they want to make sure I don't need heart surgery and that the antibiotics are clearing the bacteria.  That is also what is causing my heart palpatations  (heart skipping beats) and tachycardia (heart beating  too fast).  The Encephalitis is what is causing my confusion and walking into walls, getting bloody noses, headaches, all of that.  And if you didn't click the link, Encephalitis is swelling of the brain...caused by infection or virus.

So essentially I had a virus, they are still thinking West Nile but it was not this year's version and they do not know how I had a version that  they were aware of 2 years ago, reactivate.  I am a medical mystery as far as that is concerned.  The virus caused pneumonia and then strep, which caused the endocarditis and who knows what caused the brain swelling.

And the reason I had this train wreck happen is because I have Lupus.  Lupus is an autoimmune disease with no cure.  It, in laymans terms, is my body attacking itself.  My immune system is in overdrive and can't recognize bad bugs from my good cells and it goes after everything.  So my body was completely unable to fight off this what should have been mild virus, and the virus was allowed free range to wreck my body.  In fact, not only was my body unable to fight it off, but it was working against me by killing all of my good cells that would have helped attack the bad bugs.  It's been in remission my whole life (it's typically something you are born with.  It is not AIDS.  It is not contagious.  My kids are scared of me because they think I'm going to give them some disease.  I'm still me, and I can't hurt you - it's actually very similar to MS, another autoimmune diseases), and I"m at the right age for it and the right gender, and a simple virus which shouldn't have amounted to more than a cold, caused a flare.

It explains so much though.  Why I get sick so much, why I can't seem to kick things as fast as I should, why I am always so wiped out.  It always lays there in remission and the symptoms are mild then (fatigue, joint pain, getting sick often)...but when there's a flare, all hell breaks loose.  I recognize now, that week before I got sick where I was so fatigued I could barely function...that was the first sign of a flare.  Now when I recognize that, I know to get on antibiotics right away and steroid treatments.  A simple cold can kill me.  My immunity system is unable to protect me.  During a flare, not only will you feel very very sick, but your hair falls out, you have constant fever, no appetite, weight loss, severe fatigue and joint pain and for some people rashes, but thankfully mine hasn't done that...yet.  I did have all of that other stuff going on...still do.

Some of the symptoms include (from WebMD):

People with SLE can develop different combinations of symptoms and organ involvement. Common complaints and symptoms include severe fatigue, low-grade to moderate feverloss of appetite, weight loss, muscle aches, joint aches and swelling, hair loss(alopecia), arthritis, ulcers of the mouth and nose, facial rash ("butterfly rash"), unusual sensitivity to sunlight (photosensitivity), inflammation of the lining that surrounds the lungs (pleuritis) and the heart (pericarditis), and poor circulation to the fingers and toes with cold exposure (Raynaud's phenomenon). Complications of organ involvement can lead to further symptoms that depend on the organ affected and severity of the disease.

I have all of that except for the rash stuff and seizures and thankfully no sores or ulcers.  But the sensitivity to sunlight really hit home, that is new for me and it is literally painful to be outside without very dark sunglasses on.  
And I'm losing my hair, it's so bad I need to consider a new hair style and am constantly in headbands because I'm getting bald patches.  I've always had thick and long, what I would consider to be beautiful hair, so this rocked my world.  Call me vain, fine. It's just hard to deal with, I cry after most showers where I wash my hair and literally thick handfuls of it fall out.  The good news is it will grow back once the flare is gone.  

More bad news with this disease is that I have a very high chance of cancer, specifically lymphoma (which ironically enough I am awaiting test results back for that as my lymph nodes appeared abnormal on the chest CT).  When I mean high, I'm talking I have a 40% higher chance of getting cancer than that of the normal population, especially Lymphoma ,in my lifetime.

Half of Lupus patients also find that they have severe issues with their kidneys - another favorite body part the disease likes to attack.  I do not know yet if my kidneys are at risk, but I will be tested for it since there is a family history (with Alex) of kidney issues.  Likely he got that from me but he got diagnosed first which is a bit odd... normally a parent or grandparent is diagnosed first with genetic issues.

I have the SLE kind of Lupus for sure, which means it's systemic, it's also the most serious form.  It attacks everything.  The good news is there are periods of remission where I won't notice many symptoms at all. And of course periods of flare ups which I described above.  There is medicine I can take to prevent flare ups...I will likely be put on a course of steroids right away to help with the inflammation...and long term there is a cocktail of drugs I can take to keep it from flaring up...although a new friend of mine with Lupus said that in the community, most people don't know whether Lupus symptoms or the drugs are worse.  I have a good chance of living a normal life span and a mostly normal life if I can keep my organs healthy and keep that nasty cancer away.  But, I also need to think about some lifestyle changes...reducing stress, staying out of the sun, eating healthfully, trying to not get sick (ha ha, that's not possible with two kids and working in the germ cesspool) mild exercise, but my new friend said that lots of people with Lupus can exercise normally.  My Dr. told me for right now just easy walks and yoga are all I'm allowed.  Those even sound like too much, I still can't walk a block or even a flight of stairs without needing to sit down and catch my breath.

I have been referred to a Rhumatologist who will map out more long term care for me to manage this and hopefully prevent it from getting too bad later in life.

I don't think it's hit me yet.  I don't consider this to be very serious or life altering, but I think once I get more informed and am hit with constant periods of flares and remissions the rest of my life, it's definitely going to get real.  I'd love to hear from anyone who has it or knows someone who has it.  Knowledge is power and right now I'm feeling pretty clueless.

Thursday, July 10, 2014

ID

Today I had my appointment with the Infectious Diseases Doc.  Interesting place.  They obviously deal a lot with AIDS patients as the walls and literature were plastered with "living with HIV" stuff.  Thank God I don't have that.

While I was waiting for my appointment, I couldn't help but feel uncomfortable as to what everyone else in there had and whether I should be breathing the air.  Obviously whatever it is that I have going on isn't contagious, but what about them??  I don't want to think about it.

Anyway, of course today I woke up and my fever was gone.  My temp was 97.4.  What in the fuck?  It hasn't been below 100 in the morning since...um, never.  But she listened to my symptoms, listened to my lungs, and took 7 vials of blood.  She seemed to take me seriously and didn't seem to think I was totally insane, but she did say that my constant confusion and headaches didn't match the rest of the symptoms.   I'm supposed to go to the hospital at some point to get a brain MRI and a chest CT and IV antibiotics.  I have to wait for an "appointment".  All of this waiting is enough to drive just about anyone crazy, seriously.

She also prescribed some heavy duty antibiotics Linezolid or something like that.  It's supposed to kill just about anything.  The side effects also mention confusion.  Great.  I'm already confused.  Yesterday I got lost going to the kids' school to water the flowers.  I've been there 1M times and I got lost.  For 30 minutes I was driving around trying to find it.  Then I thought for sure when I was backing out of a parking spot, there was someone standing behind my car.  I slammed on my brakes, got out, and no one was there.  I had imagined it I guess.  So if I'm to be more confused, I guess I'll have to hire a full time driver and someone to sit with me since I can't be trusted to be alone.

Last night I started getting these terrible headaches on either side of my head, it's not the entire head, it's just on the temples.  I've had headaches almost this whole time....but what I had last night was unlike anything I've experienced before.

People, I birthed a baby weighing almost 10 pounds, after having a version to turn him around...with NO DRUGS.  I could handle that.  Yeah it was painful...but I managed.

This?  This was worse than that.  I thought I was going to die.  This was a pounding ugly thing where I saw stars flashing when I closed my eyes and could see my pulse in my vision.  I was crying out in pain and had to remember the birthing breathing I learned in hypnobirthing class...it was as bad if not worse than labor.  When I coughed, or moved it would just get bad and I'd have to cry and grit my teeth and breathe through it.

It was so bad I threw up several times.  I was scared...moreso than when I had that fever, I thought my brain was going to explode.  I was going to call 911, I was that scared, but had vertigo so badly I couldn't even turn my head to find my phone.  I couldn't do anything and don't even know how I made it into the bathroom to get sick.  A mega dose of Advil finally took enough of the edge off to where I could sleep.  I have another one right now, but it's muted by the help of Advil (caught this bastard early), but I can see my uneven pulse out of the corners of my eyes.  And light hurts lately.  I hate the sun.  It's so painful to be outside.

So that's all I know, which is not much more than I knew a week ago and even a month ago.  I just sit and wait to get an answer.

Monday, July 7, 2014

Heart Stuff and Some Whining

I got my awesome heart event monitor today.  Basically since I got sick, I have been having heart arrhythmia's and palpitations.  I had an EKG done and it came back slightly abnormal...how something can be slightly abnormal is beyond me.  It's either normal...or it's not.  So I'm on a full time heart monitor.  I have electrodes coating my chest and sides and a really terrible bulky monitor I have to wear around my neck.  To make matters worse, I have to carry this BlackBerry around which apparently talks to the monitor and sends the info back to the Dr. and I can't be more than 10 feet away from it.   If there's an event (like a palpitation or whatever), I electronically record it on the BlackBerry and my Dr's office can immediately see if it jives with what they're seeing.  It's mostly information getting, but if my heart starts doing some really bizarre stuff, they will call me.  Here is a link with lots of information if anyone is interested.  It's not very interesting.

http://www.nhlbi.nih.gov/health/health-topics/topics/holt/while.html

Sad Panda.  You can see my lovely lanyard
and one of the electrodes.  Gonna have to get
creative with the old wardrobe to hide this
thing.
I've been off work for 4 days and kid free to boot, you would think that would make me feel better, but I am really feeling worse, if that's possible. I can't motivate myself to do anything.  I am nervous about going back to work tomorrow.  I don't know if I can do it and the thought of it at all fills me with pure anxiety.  I have been making so many mistakes and it's so hard to get out of bed and get dressed and get out that door.  So.Hard.  Almost impossible.  The thought of being unemployed again keeps me going.

I checked out some books at the library to keep me busy while they're gone and hopefully catch up on Book Club.  Last book I read was in February!  I am a book club failure.

While reading this last night, I started getting a fever.  I noticed it when it was 102 and took some Tylenol.  I briefly felt better and went to water the plants, then an hour later started feeling dizzy and weird.  My temp was at 103.9.  I couldn't take more Tylenol so I just sat and read.  I ended up under a blanket because despite it being 81 degrees in here (no a/c), I was freezing.  Goosebumps, teeth chattering, the works.  A half hour later my fever reached over 104 degrees, and it finally stopped at 104.8.  Despite being really uncomfortable, at around 104.5 I stripped down and layed on the couch with the fan on me and cold washcloths coating my body.  I was literally shivering.  I actually felt at peace when it was super high.  The constant pain I live with now was gone.  And I think I was delusional enough to feel super content.  Which is kind of scary.  I also thought the kids were home and in their beds and had a minor panic attack (okay, major, I literally couldn't breathe for seconds)...then realized they are on vacation.  Then I saw the neighbors in their back yard with their kids and dogs and thought I should join them even though I've never met them.  Glad I didn't leave the house.  It seemed like a really good idea at the time.  I did call the on call Dr. and he didn't think I should go to the hospital.  So I dealt with it at home and it broke around 2 a.m.

It's looking like tonight will hold the same kind of fun.  I am rocking a 102 fever right now and that's after Tylenol.  I'm starting to alternate with Ibuprofen, even though my cardiologist said not to take that.  I think getting my fever down is probably more important.

What else?  Oh, my hair is falling out.  I don't want to wash it because that's when the hair loss is worse, but I sweat so much at night that I feel like I should wash it every couple of days but I do use dry shampoo a lot lately (sexy I know...a chick who is all sweaty with electrodes all over her body.  Hot).  Literally handfuls come out.  I have a small patch on my hairline where you can see my scalp.  You all know how I feel about my hair so that's depressing.  I bought some headbands yesterday that are bright and colorful so it works for now.  Gotta work with the hand you've been dealt sometimes.

I am not sure how much weight I lost as I didn't start weighing myself until a week into this illness, but I lose about a pound a day.   I would guess it's in the area of 20 or so pounds now the past 3 or 4 weeks.  It's a miracle diet!  Who else is in?  Sadly some people would probably jump at it LOL.  We are all so fickle.  I take vitamins, but I can tell, I've lost any glow...and that's probably why I'm losing my hair.  I try to eat.  I just can't.  I force it down.  Anything that sounds good, which is usually carby junk food.  I eat a lot of Cheez Its and ice cream.  And Popsicles.  I also don't drink coffee anymore, it makes my heart too jumpy and honestly the thought of coffee makes me want to gag.  I am digging the caffeine free Fraps at Starbucks lately though.  I try to go high calorie whenever possible.  Thus, the milkshakes, ice cream and Fraps that I live on.

I have dark purple circles under my swollen eyes.  And usually I don't care enough to cover it up.  Or don't have enough energy.  I guess I still care.

I am just tired of the pain.  And tired of the fatigue.  I can't even go to the bathroom without getting winded and I just have to sit there for a minute, then I have to sit down again when I'm done.  I can't concentrate.  I get lost all of the time, or forget stuff.  I have notes laying all over the house.  I feel like a total failure half the time because it takes me so much effort and so much more time now to do simple, menial tasks.  My house is a disaster.  I'm a very neat person, but I can't muster the energy to deal with upkeep.  I cry a lot.  I am scared.  And tired.  Someone asked me the other day if I thought I might be depressed and I said no.  But maybe.  I suppose depression would be a natural reaction to living your life as basically an invalid...in constant pain and fear.  But I'm not even going to mention that to the Dr., I don't need another med and another issue on my damn chart.

And I'm scared about work.  I cannot take more time off (with the exception of another Dr's appointment on Thursday).  I don't want them thinking I'm some whack job hypochondriac.  I've just had a shit run of luck this year with health issues in my family but try explaining that to your new employer.

When Matt returns, I'm going to go through our wills and update them.  We drew them in 2006 so Alex isn't even mentioned.  And I can't remember who we put as the guardian of the kids or the trustee of the will.  Yes I am thinking about this stuff.  I started thinking last night that I was going to die and no one would find me for a week.  My dogs would die from lack of water, and my kids would be motherless.  I think about it a lot more than I would like to admit but last night I seriously thought it was the end.  I wasn't sure I'd wake up.  A lot of that was probably delusional from the super high fever, but overall, yes, I honestly feel that terrible with this thing.  I feel like I'm dying half the time.  Someone this sick and in this much pain can't not be dying...that's what I keep thinking.  I sincerely hope I get some answers soon and it's something small or fixable.  After you go a month with chronic pain and suffering (and yes, that is how I would describe this), you change.  The little shit that used to bug me doesn't matter anymore.  Not just because I don't have the energy to deal with it...it's just not important.  I just don't want to leave my kids, I want to see them grow up.  So I'm doing everything I can to get better and healthy.  I'm trying hard to think only positive thoughts.  It's hard, but I try.  I put positive affirmations out there and say stuff like, I'm grateful I am healthy and well...even though it's total bull shit.  I guess I just need to believe it more, maybe a miracle will happen.

I'm feeling you Grumpy Cat

Thursday, July 3, 2014

Sick

I'm sitting here at work before a long 4 day weekend feeling pretty unmotivated to...work.  I thought it might be helpful for me anyway and for anyone who might come down with whatever this is in the future, for me to type out what's been going on.

It mostly started June 16th.  I was just feeling very wiped out and had bad body aches and was really dizzy all of the time.  I didn't quite feel like I was sick though, just  felt more like I was pushing myself too hard.  This went on for another two days, then that Wednesday I got home from work and took my temperature and found I had a pretty high fever.  I somehow made it to work Thursday, Tylenol helped my fever go down to a more manageable range and I basically got home and went to bed.  I was off work Friday for my flex day and Abbie and I sat around and watched movies all day.  My fever was hovering around 103 regardless of Tylenol...I slept a lot.  And started having really bad headaches, body aches and was dizzy, weak, and tired.  Literally, so tired I could barely walk to the bathroom.  That went on all weekend. I did call the Dr. on Friday and they  told me it sounded like I had a late flu virus, not to come in and I should feel better by Monday.   Finally on Monday the 23rd, I went to the Dr. in the afternoon.  I had a fever of 101 when I checked in there.  They took blood and sent me to the hospital as my pulse ox was lower than it should have been and I had started having some chest pressure and a slight cough.  I went to the hospital and they did a chest CT and found I had pneumonia.  I was on oxygen for awhile until my pulse ox went back to normal then was sent home with cough syrup and antibiotics.  Two days later, June 25th, not only was my cough bad...not only did I still have the debilitating headaches and high fever, but I noticed my heart started beating weird.  It would beat, then sort of pause for a second, then start beating again.  So I went back to the Dr. for an EKG.  When I got there, my pulse was very high, 120, and my blood pressure was high, 130/90.  The EKG was slightly abnormal and caught three palpitations during the 30 seconds I was on it.  The Dr. ordered an event monitor for me to wear for awhile...which I still don't have; I get it Monday.  The hold up was because I had to wait for my insurance to approve it.   I also had two blood cultures done which as far as I know at this point have come up clear in that there is no bacteria in my blood...only an elevated white blood cell count so sepsis is out, which is a good thing.  

Basically since then, I went in again to be tested for strep, which came up positive also.  I was given a different antibiotic which I started Monday 6/30.  And more cough syrup, which I can only take at night so isn't super helpful.  My cough is still bad, but it's productive now so I hope that is a good sign.  The fevers are more intermittent...I can go 8 hours or more without having one, but then usually the next day I get a bad one again, so it's tricky.  I get hope that I might be recovering then the next day I wake up feeling like shit again.  The headaches are definitely still there, especially in the morning and night.  Fatigue is horrible.  I can't even walk up stairs without having to stop to catch my breath.  I'm really dizzy and afraid of fainting, almost constantly, I get that fade to black feeling a lot...way more than I'm comfortable with.  I'm scared to drive, I get confused and I've been getting lost driving to places that are common to me.  I totally missed my exit to work this morning and had to GPS an alternate route, I just couldn't think of it.  I've been making a lot of mistakes at work too.  I don't know if it's just that I'm tired or what, but my brain is seriously not working right.  My heart is still doing the weird beat thing...it's actually doing it more often.  About every 4 or 5 normal beats then it skips.  I woke up really bloated today...I almost feel like I'm not outputting as much as I'm inputting.  I'm drinking a lot of water but I don't feel like I'm going that much.  That might be something I should mention.  I don't eat much, I have no appetite.  I force myself to eat but it's not much.  If I eat normal amounts, I get sick, and my cough is so bad that I'd be scared of throwing up anyway.  I have dark circles under my eyes, despite sleeping on average 10 to 12 hours a night and naps when I can grab them.  Even though I've lost significant weight since becoming ill, I look like I've aged 15 years.

I sound like a hypochondriac, the symptoms keep building up and I know people are losing patience with me.

I have an appointment next Thursday to see some specialist who works mostly with viruses.  They think I could have encephalitis.  Which explains a lot.  Again, another condition of the original virus.  And nothing can really be done for it, pretty much it sounds like I have some kind of nasty bug (probably mosquito or tick borne) and I have to be patient and heal.   It's hard to be patient though when I have to wait forever for any answers, then there aren't any, meanwhile more symptoms keep popping up and I'm not getting any better.