Tarlov Cyst Life Status: October 2015

At some point a few weeks ago after we knew what ‘it’ was, I remember telling my husband I would be able to deal with everything so much better if I could just find a “new normal”.  Unfortunately no two days are the same.  Sometimes I have pains in specific locations that start at the same time like a unified symphony, or the pains come at different times of the day and are spread out depending on what I’m doing, and/or new symptoms & pain begin surface every few days.  As you can imagine, this makes finding my “new normal” rather difficult.  I honestly have NO idea what I will be faced with when I wake up each morning or even what the afternoon and evening have in store for me.  I realize its only been a short amount of time since symptoms got much more prevalent, so I may just need to be patient with this.  Eventually I hope that I get a handle on the condition and it all settles down into a “normal” until we see the the neurosurgeons.

The one pain that is constantly present 24 hours a day is at the base of my spine, tailbone, upper tushy area.  No matter what position I am in, I feel it.  Constantly.  Without any question, this pain is ALWAYS there.  It’s such a weird thing to describe and it changes throughout the day depending on my position.  Some say it feels like you are sitting on a rock, but thats not really how I feel it all of the time.  Imagine if you cut your finger with a knife.  As the blood rushes to it, you feel it burning and throbbing.  That’s almost exactly what this pain feels like most of the time.  With every beat of my heart, the blood pumps at the same rhythm to the same location and throbs. Then from there, sometimes that burning pain will cause a radiating pain that travels into my hip and down my leg.  Every now and then, this pain will go all the way down past my knee, into my calve, and into my ankle and foot (mainly just on my right side).  On top of this, I constantly feel lightheaded and dizzy.  Standing, sitting, walking, simply turning my head from side to side, I feel like I’m going in slow motion and the room is moving around me.  It’s such an annoying feeling, I wish I could describe it better.  I would honestly take the pains I have over this one symptom ANY day.  It’s horrible.

Alright, then it comes time to use the bathroom (sorry TMI).  Most people get in, do their business (#1), and go.  Not me.  I get most ‘business’ done, but then have to push a bit to finish.  If I don’t I run the risk of making my kidney situation even worse.  Although this doesn’t cause any real pain, it is pretty annoying to have to do especially when you are still drinking almost 2 gallons of water EVERY single day.

OK, so all that more or less covered my “normal” the first few weeks…

Next up, dealing with the tasks most people would consider easy & simple.  Putting my hair up into a bun for example.  Nope, was getting harder and harder to do.  I can’t bend at the waist whatsoever without pain.  Doesn’t matter if I tried doing it sitting or standing, bending over at the waist is a no go for me now.  Putting on socks is difficult (thank God I live in San Diego where its flip flop season year round).  Making meals isn’t too bad for pain as long as I’m not standing for a long period of time, but the dizziness is present so I have to make sure I’m not moving too fast.

I remember going to Costco with my husband and holding onto the cart almost the entire time simply because I was so dizzy.  This was really the first time I was aware I started the holding thing. I wasn’t in much pain, but now I always fear losing my footing/falling.  Holding onto something just gives me peace of mind.  Anyways, back to my Costco story.

We were about 1/2 done with the shop and I needed Greek yogurt.  My husband was grabbing something else we needed down the aisle so I reached up in the cooler myself to grab two containers, one in each hand.  I struggled so much that I thought I was going to drop them.  It hurt to have my hands over my head with the added weight (and these were only a few pounds each at the most).  I used to press 30 pound dumbbells for reps and now I could barely hold 10 pounds above my head.  As soon as I got the containers down and in the cart, I immediately began to cry right then and there in the cooler aisle of Costco.  I didn’t cry because of the pain though, I cried because I felt like my life was being stripped away from me. I was devastated that ‘life’ was becoming more and more difficult.  Little things I never thought would be a problem, were now getting to be a problem.

Same thing happened when I had my husband put up some wall decorations in the kitchen a couple of weeks ago.  He wanted to know where I wanted them placed (the letters E A T).  I grabbed the ‘E’ that might be like 3-4 pounds, lifted it in position, realized I wanted it higher, so pushed it up against the wall, over my head, and bam.  Instant pain down through my entire back.  I couldn’t push it any further and almost dropped it.  I wasn’t even on my toes yet but just the motion and ‘weight’ loading down on me hurt.  Couldn’t help by cry out of sheer anger.  I feel totally useless 90% of the day now.

Then last weekend, we were headed upstairs for the night and my husband & daughter were ahead of me.   They got to the master bedroom and as I got to the top of the stairs, I let go of the rail, and started walking towards the door.  My husband happened to be watching me (I swear he ALWAYS watches me now… even more of a creeper because of all of this).  Just as I took my first two steps at the top of the landing, I stumbled and had to catch myself on the baluster.  Scared the crap out of me and I’m sure my husband didn’t enjoy seeing it either.  Not a good feeling.  I took my shower in tears that night out of fear, anger, anxiety, and frustration.

Like I said, yes the 24 hour pain sucks BUT thats something I can learn to deal with and manage with medication (once I find something that works that is).  Its ALL of the other things that come up that prevent me from at least feeling somewhat “normal”.  So much of my days are spent laying down now it’s unreal.  At least 19-20 hours of my day you can find me in bed or laying on the couch.  It’s a HORRIBLE feeling.  Totally useless even though I’m usually trying to do recipes and blog.

A couple of times a week I’m still bringing my daughter to school… hurts like shit, but it’s something I want to do.  She’s already so worried for me, I know I have to try and do as much as I can for her sake.  Having her see me ‘up’ as much as possible is important to me.  A couple of times a day I take my dog in the backyard and kick a ball around for him.  Luckily I don’t have to bend down and can stay more or less in the same spot.  I try and take a short 5-10 minute walk midday around my cul de sac.  Sometimes we still go out to dinner… yup, that SUCKS also.  Sitting down for more than 5-10 minutes will cause the worst pain.  I grin and bear it for my husband and kids.  And occasionally we go to Target, Costco, and this week I finally got to go to my daughters volley practice.  Literally… thats my ‘activity’ for the day.  It’s disgusting and sad.

You know on Fast & The Furious how Vin Diesel says he lives his life a quarter mile at a time?  Yeah, I’m living my life 5-10 minutes at a time LOL!  Literally, everything I do now is in 5-10 minute increments.

Here is what a typical day now looks like for me:

– Wake up, roll out of bed (literally I have to roll over to get off), and assess the pain (where its at, how bad, if I need to lay back down).

– If I’m doing OK with minimal/manageable pain, I will bring my daughter to school.  I usually bring along my ‘Tush Cush” (padded seat with a hole at that back to relieve tailbone/coccyx pain) which helps ease the vertical pressure of sitting.

Her school is about 20 minutes away and we usually hit a little bit of traffic so the entire process usually takes about an hour.  First 1/2 of the trip I’m still doing pretty good, but by the time I actually drop her off I’m dying.  Seriously, sitting is BRUTAL.  Absolute worst.  If its really bad, I will stop at the grocery store to grab a few things just so I can stand for a little bit.

– As soon as I get back home, I’m on the couch and begin the “cycle”…

TENS unit

Heat Pad (my new BFF)…

When I start feeling stiff or pain gets worse, I will usually stand up and walk around the house for a bit (do some dishes, straighten up, take my dog outside, grab a snack, get the mail… nothing too exciting and in 5-10 minute increments of course).  It just allows some pressure to be taken off of my lower back.

The first week after my ER visit where the Tarlov Cyst was found, I spent SO much time on the phone.  I don’t think my phone has ever rung so much in my entire life.  If we weren’t trying to get in touch with insurance people, it was calls to neurosurgeons, tracking down addresses, setting up appointments, booking our flights & hotel for Dallas, and talking with the Tarlov Foundation.  It was non stop for at least 3 days.  Once we finally had all of the information we needed to get the ball rolling, my MRI was sent out to the top neurosurgeons in the world who specialize in Tarlov Cyst Disease.  Yeah, there are less than a handful in the world.

Once things calmed back down, it was back to the couch!  This is where you can find me the majority of the day now!  Recipes, blogging, eating, TC research, and social media-ing!  I also live in pajamas now (thats kinda cool though in a depressing kind of way).

This cycle (TENS unit, heat, eat, work, and 5-10 minutes standing in between) is repeated until the afternoon when my daughter gets home from school.  Then I get up, grab her some food, have her do homework, and depending on how I’m feeling… start dinner!  I used to cook 4-5 nights a week, my husband would do 1-2 nights, and we would eat out a couple of times here and there also.  Now, I’m probably doing dinner 2-3 nights a week and my husband is picking up the slack on the other nights.  It may take me twice as long to get a meal on the table because I have to lay down for a bit here and there, BUT I’m getting it done!  Trying my hardest at least!

My daughter may see me on the couch or bed laying down quite a bit now, but I’m trying my best to keep things as ‘normal’ as possible.  I knew she really wanted to do her nails last week, but she was hesitant to ask.  She had mentioned it once, but then never brought it up again.  One day when I didn’t need to be totally horizontal on my side, I told her to grab her colors!  Instead of doing them like we normally do, we took it to the couch!  No problem!  Nails done!!!

At one point last week, I was beginning to see that bending over to put my hair into my daily high bun was causing a lot of pain.  Not only that, almost every time I did it and found myself in pain, I would immediately begin to cry.  Not so much because it hurt, but again… simple things I do everyday were getting to be more and more difficult.  I decided it would be best to just chop off my hair so I wouldn’t have to bend over and put it up any more!  As soon as I told my daughter, we jumped on Pinterest and tried to find cute short to medium hairstyles!  Her idea of cute and my idea of cute are very different so iPad for her and I stuck with my phone!!!

My hair problems were solved and no more bending over or reaching up to get my hair out of the way!  One less thing to worry about and set off the waterworks!

When things get bad during the day and I’m not getting any kind of relief with my therapy ‘cycle’, I end up in my big comfy bed!  Narcotics don’t do anything for pain (although they definitely take some ‘edge’ off), BUT tranquilizers definitely help me fall asleep!  I can usually take 1/2 of one and get a few hours of pain free rest.  I only retreat to the bedroom if my daughters at school though.  Again, I will NOT have her see me at my worst and in bed upstairs all day.

That basically covers my days now… sad huh lol? I have no idea what the future holds, but for now this is the current state of affairs.  It’s been exactly like this for the past 3 weeks now.  Every now and then if I’m feeling up to it, we will take a trip to Target, Costco, or eat out somewhere for dinner.  We have also been taking short shopping trips to prepare for my daughters birthday party this weekend or get things to spruce up the house!  I try my best to stay as positive as I can, but even the strongest individual will have their moments.

I’m extremely fortunate to have my husband by my side all day long.  Since he works nights, he’s home by the time my daughter has to go to school in the morning and upstairs (sleeping) while I’m downstairs doing my thing.  Then he wakes up, gets the kid from school, does shopping if we need it, runs errands, cooks, cleans, does homework with our daughter, takes care of me, does dishes, gets everyone ready for bed, then he’s off to work to catch bad guys for 12 hours.

I swear to God.  I may be the one physically going through this, but my husband deserves a freaking medal of honor.  I already knew how fabulous he was, but now I’m convinced he really is SuperMan!

Tomorrow we have our first neurosurgery appointment. Not expecting much from this one because its with our actual insurance (Kaiser).  We are prepared for them to offer little guidance and help for my condition, but its a process we have to go through in order to hopefully get approval to see the doctors and team we need for surgery with Dr. Feigenbaum in Dallas!  At the very least, I’m hoping for a prescription for a medication other TC patients have had success with.  We should definitely know more about how the insurance problems will go.  Based on what this Kaiser doc says in the first 5 minutes, the entire tone will be set for my treatment plan & options.  Dear God, please do NOT let me attack this doctor because my guns are already ablaze!