Goodbye Locks

About a month and a half ago I started noticing my hair was falling out in larger amounts than normal.  I began finding it everywhere.  All over my pillows, blankets, clothes.  When I would brush my hair I would lose a lot more than normal.  At the beginning I didn't fret because I've always been blessed with thick hair and I could afford to lose some locks.

The same thing happened in high school when I got really sick for the first time.  Like a sicko I actually saved all the hair that would fall out everyday.  Only recently did I throw the plastic zip lock bag away containing my precious brown hair.  I had no idea at the time it would be happening again soon.

In high school, when it grew back it came in fuller and thicker.  But it took years for me to get it back to a healthy state.  My friend Anne gave me the nickname "Sonic" because I would have little sprouts that stuck up in the middle of my head like Sonic the hedgehog.  We might need to reinstitute that name in several months.

Back then I don't remember being extremely upset, partly because I was still a tomboy at 17 and didn't know how to style my hair anyway.  But through the years as it grew back I came to love my long, thick, wavy hair and the reaction I got from people.  Once I actually learned how to use a blow dryer and straightener, my hair became "my thing".  

This time around my hair was in horrible condition to begin with.  I guess slowly since last December my hair hair has succummed to my malnourishment, becoming extremely dry and impossible to style.  It tangles SO easily into ridiculous knots.  I'm not talking about little knots that need a little love, I'm talking a matted looking knot almost the size of a baseball.  I kid you not.

One day after washing my hair I did my usual towel dry and HELLO! somehow my hair had gotten into this ridiculous knot.  My sister and mom can back me up on this one.  They each spent at least 2 hours trying to get this thing untangled.  Once I realized it was impossible I knew it had to be cut out.

So my mom cut it out and I really don't think I understood how close to my head it was.  The rest of my hair had to be cut fairly short so I don't look totally crazy.  After I contemplated getting the Kate Gosselin backwards mullet, I settled on a shorter 'do to match the crazy short parts from the knot. It will be much easier to manage now I hope.  But still, I miss my hair!

Don't get me wrong, it's not like you see bald spots on my head when you look at me.  But wow! I would safely say I've lost at least 50% of my hair.  Or at least it appears that way visually. Everyones telling me, "It's not that bad." and "It'll grow back so much healthier!"  My balding brother rightfully complained, "At least you have hair that will grow back."

That's all for now.  My creativity will return soon.  Pain meds make it hard to be thoughtful.  Till next time...

Thanks

I just wanna say thank you to everyone who has expressed their concern, well wishes, and prayers for me in the past couple of months and especially this week.  I've come so far since a week ago when I couldn't eat and my legs looked like twigs that were about to snap.  I'm eating well again and my body is getting stronger by the day.  I'm still having my normal Crohn's problems but as far as the weakness and pain I felt from sugery, it's improved drastically.

I just took my Methotrexate injection and I'm holding on to every last ounce of hope.  It's week Six I believe so I have another month before the doctors give up all hope that it will work. Cross your fingers for me.

Again, just thank you thank you thank you to everyone who called, texted, or sent me cards.  I know I don't always do the best with keeping in touch but sometimes in the hard times I don't wanna talk to anyone.  But that doesn't mean those thoughts have gone unnoticed.

Just because

Feeling better as far as my pain levels and my appetite has returned. Here's a couple pictures from my hospital stay.  Very flattering, I know.  I don't always look stunning in the gown.

The thing to the left in the above picture is called a PCA and was also my best friend.  Attached to it is a button I could press four times an hour to administer my morphine to myself.  It was some good stuff.  Although I didn't feel like I was getting enough, it definitely made things more comfortable for me.  By the time my pain was the most intense, I was literally staring at the clock counting down till the next time I could press.  

I love this pic :)  Me and my beautiful best friend and sister, Nora.

Her and my brother in law, Ryan, came and saw me a couple of times with beautiful flowers and iced tea once I was able to eat.  Now the first time I ever got morphine I was in the hospital in Maryland and the nurse gave me a specific warning that I was to be the ONLY person to press my PCA button.  For some reason I took this warning seriously to the disappointment of my visitors.  I mean, who wouldn't want to press a button that gives someone morphine?  So this time around I made sure to let both Ryan and Nora and everyone else for that matter press it.  People seem to enjoy the concept and when you are messed up on narcotics it becomes enjoyable for you, too.  Anyways, I love these two but especially my sister because she had to help me bathe and clean up some nasty shit when I could barely move.  I have no idea if this picture was staged because on this particular day I was out of it.  For some reason I complained the pain meds weren't working but they managed to knock me out for 13 hours at a time...hmm...Maybe I have a problem!  Anyway, did I mention how much I love my sister?  

It can't rain forever

A lot has happened in the past week which is partly why I haven't updated.  Do you remember the MRI I got about a month ago to see if I had an abcess?  Well, although I didn't have one at the time, I'd say a week later I started seeing symptoms of one and it wasn't pretty.

On Monday (the 4th) I called my doctor because my condition had deteriorated drastically in one week.  It started with unbearable pain in my behind.  I couldn't lay on my butt, sit, cough, or walk without pain.  I was developing an abcess and as each day went by the swelling and pain got worse accompanied by alarming fevers, indicating my body was fighting an infection somewhere.

Now forgive me for the rest of the details as I am on pain meds and still in quite a bit of discomfort.

So the day after I called my doctor he called back and told me I needed to be admitted to the hospital right away.  I knew this was going to be the case and quite frankly I wasn't comfortable being at home anymore with how dehydrated and sick I felt.  I settled in at the hospital on Tuesday night and by Wednesday the surgeon came by to confirm that I indeed had an abcess.  

Everything happened very fast after this.  I received a blood trasfusion right away in preparation for surgery because my blood counts were horrible.  I went in for surgery around 1:30 p.m. and everything went smoothly.  They drained a lot of fluid from my abcess and left three drains as well as this rubber band type thingy that will remain draining fluid for the next couple weeks.

The day after surgery they came by to remove three of the drains.  After giving me some extra morphine they pulled the drains out.  Ohh myyy goddd.  It hurt.  Imagine if someone was pulling a thorny rose stem out of a pinhole.  That's what it felt like.  After receiving so many narcotics in one day, I literally slept for 12 hours, unable to even open my eyes in the moments where I attempted to talk to my mom.

I won't lie.  The next couple of days were uncomfortable and painful.  Keep in mind I'm still dealing with my actual bowel problems and how frequently I go to the bathroom.  On top of that I have to keep my wound clean and change the dressings quite often.  I was very bloated from all the fluids they gave me so I needed to pee constantly.  It was difficult getting in and out of bed that often while in so much pain.  

I was discharged on Saturday even though my doctor is worried about the state of my nutrition. I have dropped a considerable amount of weight in the past month and find I have no appetite. I have lost so much muscle in my legs that they literally shake when I'm standing for more than a couple of minutes.

The next couple of weeks will be a challenge in trying to get up and around more often.  In two weeks I will get the band removed from my behind and they will replace it with something else that will allow fluid to drain so that this problem does not come back.  I'm hoping my appetite will return and I can get some strength back.

This is kind of random and all over the place but I just wanted to update everyone on what is going on.  Back to sleep for me.

Today

I woke up today from a benadryl induced coma and proceeded to the bathroom in my usual wake up pattern.  Months ago I was forced to swallow my pride in exchange for an occasional five hours of solid sleep knowing I would have to wear a protective undergarment (I can't bring myself to say the word; I guess not all pride is lost) throughout the night.  Taking benadryl before bedtime induces a solid sleep and in exchange I give up my ability to control my bowels. (Not like I have much control any other time).

I proceeded into the hallway with my usual lightheadedness, scaling the walls and being careful not to bump into the line of my grandfathers World War II photos that decorate our hallway.  I entered the bathroom just as my vision returned and slammed the door shut. After cleaning up as much as I could I began to draw a shallow bath to cleanse my body and relax my bowels.  As I shuffled around in the bathroom, I unintentionally woke up my mom in the next room.  She gently knocked on the door and asked me if I was okay, to which I assured her I was.  

As I sat in the tub concentrating on my breathing I listened to each one of my neighbors start their cars for their morning commute to work.  I thought about how much time has passed since I was one of those early risers making my way to work.  I began to connect each car sound with the various faces of my neighbors, the old junker cars being much easier to assign.  Just as I was drifting off into my thoughts, my brother tapped lightly on the bathroom door and told me not to hurry but he would need the bathroom soon for work.

Damnit, I thought to myself.  I wish I could just sit in this tub forever.  Somehow five minutes later I willed myself to get out.  I dressed in the clothes I was wearing before and made my way to the hallway where a large mirror that hangs above our hamper slapped me in the face with my own reflection.

I walked closer and examined my face.  My pale gaunt skin contrasted greatly with the redness in my infected eyes and the dark circles underneath.  My skin was no longer smooth and blemish free.  My hair looked considerably thinner and as I ran my fingers through the knots I questioned in my mind if my medicine was the culprit or my lack of proper nutrition. Naturally, I blamed the medicine.

Slightly hunched over, I lifted my shirt to trace the usual spots of sensitivity on my stomach, attempting to diagnose what kind of day today would be.  The spot by one of my scars was mildly tender as was another usual hot spot of inflammation above my belly button. Maybe, I thought, today would be a good day.  I turned to the side with my shirt still raised, partly to tend to my own vanity but also to determine how swollen my belly was.  I turned back to face the mirror and glared at my scars.  Inside, I hated myself for not finding strength in what they represented, but for thinking about how much better they look on my pre-flare up stomach.

I made my way back to my room where my mom was sitting on my bed watching TV.  I think I burst into tears when I saw her because the simple task of bathing had worn me out and I was glad she was there.  I laid on her lap much like a five year old would do as she gently stroked my head and reassured me that it was okay to cry.  She grabbed the pills on my nightstand and dispensed them to me.  I even took the mutiple vitamins I usually scoff at because I knew it would make her happy.

By now my tears had subsided and my mom returned to affectionately stroking my hair in her attempts to calm me down.  She told me she was watching the Food Network and while I am often put off by the talk of food so early I was happy to watch today.  As the program returned from commercial, a certain nameless Food Network celebrity chef popped on the screen.  I twisted my head up towards my mom and with my teary face and runny nose said, "You know I hate this idiot.  Give me the remote." Turning back to the screen, I couldn't see my moms face but I could feel the silent laughter coming from her body as she chuckled in response to my comment.  And as I laid there changing the channel to my favorite morning news crew, I couldn't help but to crack a smile of my own.

Health Update #2

It was brought to my attention that I haven't updated this thing in a while.  This is because I have felt like absolute garbage the past two weeks and haven't really had a desire to use the computer let alone talk about me still being sick.

I had my MRI last Tuesday and a doctors appointment right after.  It was probably one of the worst days I've had health wise so being at the hospital for 5+ hours was torture.  I was dehydrated, lightheaded, and short of breath the whole time.  It was a rough day but I was glad I got everything done.

Not having the MRI results right away, I discussed treatment options with my doctor at the appointment.  He basically gave me three options.  Try another drug called Tysabri, add Methotrexate to my Humira treatment, or surgery.  I linked those if you are actually interested in reading about them because it's hard to explain how they work.

I wrote Tysabri off in my head right away because of the ridiculous "rules" that must be followed on the drug and incidence of a deadly brain infection with long term use.  Um, no thanks.  At least not right now.

So ultimately I decided to add a weekly injection of Methotrexate in addition to my Humira injection.  He has pretty much written off the possibility of Humira ever "working" but told me I can keep taking it, so I will.  He was also pushing for me to go on steroids again.  And while I am desperate for relief right now, I know steroids are not a long term solution.  I think back to the absolutely horrible side effects of steroids and how bad it messed with me mentally when it was time to come off them.  I don't think I could deal with it this time around.

A few days later the MRI results came in with good news that there was no abcess and therefore I would not need surgery.  Awesome.  But of course no good news comes without some bad.  The bad news was that I had a couple more fistula tracks (tracts?) then they originally thought.  But whatever, I'm already feeling what I'm feeling so that really didn't make a difference because it is not something they can treat.  Fistulas heal when your body heals.

So with the addition of a couple of antibiotics I've been still feeling like crap even after my first Methotrexate injection.  But my doctor says I won't feel relief for 8-10 weeks.  Aren't these waiting games just wonderful?

I'm wearing my marathon tshirt today that says "13.1 miles Crossing the finish line for a cure".  Ugh, if only it were that easy.

Health Update

I broke down on Monday and agreed to have the colonoscopy I so vehemently refused a couple weeks ago.  I realized my doctor wasn't going to leave the issue alone nor would he be comfortable making future health decisions without first hand knowledge of what exactly was going on inside.

For those of you who have never had the priveledge of having a colonoscopy, you are really missing out.  If you are getting complete anesthesia, the preperation beforehand really is the worst part of the whole deal.  Because doctors need your whole digestive system to be cleaned out, you have to drink massive amounts of fluids mixed with different laxatives the night before.  In the past I've had to mix mine with Sprite and Capri Sun.  Needless to say, I can drink neither to this day.  And although this prep wasn't that bad this time around, I won't be touching a bottle of blue gatorade for a while.

So I arrived for my appointment at 7 am after getting a total of 45 minutes sleep the night before.  Around 8 am they started me going with fluids and medicine to relax me.  I was visibly anxious and slightly emotional the whole time.  In case you didn't know, I had my bowel perforated during a colonoscopy before and laid there for four complaining of pain before anyone recognized something was wrong.  I've had colonoscopies since then but it's always something I think about especially when I'm flaring and my bowel is prone to perforation.

I had the procedure done at Penn Presbyterian hospital where I see my doctor.  I must say, it was the most comfortable colonoscopy I have ever had done and the staff was beyond accomodating.  Thankfully at Penn Presby, they completely sedate you.  I woke up from the procedure about 30 minutes later.  The last thing I remember was them telling me to lay on my left side and get comfortable like I would at home.  And I was out.

Now before the procedure the doctor asked me if I would like my bowel dialiated if they came across a serious narrowing.  Dialation would allow them to pass the scope around the narrowing to figure out what was beyond.  I told them No, basically, because that's exactly how my bowel perforated before.  I didn't wanna go down that road again.

So after being in recovery and getting to see my momma, the doctor came in with the results.  I was still pretty woozy as he explained the severe inflammation I have in my bum and lower colon.  Thankfully there's some healthy large bowel beyond that but they were concerned about a narrowing and abandoned the procedure when they reached the point where my small and large bowel met.

This meant that I needed to have another procedure, called a barium enema, to determine the extent of the narrowing.  Oh...My...God.  I have never had this done before and had I known how horrible it was, I would have agreed to dialation during the colonoscopy.  After my doctor lying and telling me it would "only take 10 minutes", I went to another department to have that done.  Basically, without going into too much detail, they stick a tube in you and shoot barium up there all while having you move in ridiculous poses while they take xrays.  Keep in mind the tube is still up there while you are being told to lie on your stomach, side, standing up, on your back, etc.  It was a very uncomfortable exam.

So the good news; the barium enema showed no stricture like they thought during the colonoscopy.  Apparently it was just my appendix.  Whatever that means.  The bad news; the severe inflamation at the lower end and the discovery of a fistula and possibly an abcess.  I already had an inclination that I had a fistula for a while now but didn't really say anything about those symptoms.  I don't know how to explain it so I'll just give you the dictionary definition. A fistula is, "an abnormal passage leading from an abcess or hallow organ to another organ permitting passage of fluids or secretion."  It's a lot more complicated then that but I will spare you the details.  Basically, the fisutla is like a crack in my intestine from all the damage inside whereby bodily fluids flow to places they aren't supposed to be.  Therefore, you develop a pocket of infection (abscess) somewhere in the body.  I have to get an MRI in a couple of weeks to determine if in fact I do have an abscess.  From what I've read and heard from people, an abscess can be quite serious and almost always needs surgical intervention.

While my doctor waits for the results of my biopsies, I need to consider the next move.  We briefly discussed several options as far as medicine.  Some of them have serious side effects regarding fertility and paralysis.  Scary stuff.  He also mentioned surgery to give me a permanent colostomy.  This would most likely give me my life back but at the risk of a whole host of new issues.  Not ready to even think about that yet. 

I just had the procedure yesterday (Tuesday) and I've already been contacted by my doctor and various hospital peoples about 5 or 6 times.  It's kind of scary and the fact that my doctor himself has called 3 times has me worried that he really doesn't know what the hell is going on.

Lots to think about.  In the meantime I'll keep taking Humira.  My hope for it hasn't died quite yet.