It's just a birthmark!

Told ya.  Lots of medical stuff has
been taking place!  

During the last month, in the midst of all the holiday celebrations, I've had a lot of medical stuff going on. No worries - none of it has caught me by surprise. To summarize: in the last month I have had ankle surgery, a wisdom tooth and molar removed, and a laser treatment on my birthmark.

Whenever I am out and about, I just about always expect staring due to my birthmark. I expect weird questions and statements…and sometimes the occasional stupid remarks. The thing is though…When I go to a hospital or a dentist office, I don't really expect many ridiculous stories to unfold - at least not because of something hospital employees say. I guess I go into those buildings thinking that those who work there have a bit of knowledge that maybe the average Joe doesn't have. Maybe they don't know why my face is purple and pink, but I guess I've always assumed that they realize, as they work in their field, that there are many different kinds of people that don't necessarily look, or even act the same as others. I guess I also assume that they have trained themselves or have learned to have a professional filter somewhere between their brain and their vocal cords. But, I suppose that even people who work in the medical offices are also human…and can also give me a story to tell.

All of the stories I am about to tell you are true. And they've occurred within the last few months.

As I was preparing for my ankle surgery, I had to have a few podiatry appointments that included me going for x-rays of my ankle and foot. While waiting to be called back for the x-rays, a young lady (who works for the hospital) came in the waiting room, saw me, and asked, "Oh, are you wearing face paint or something?" I looked at her and said, "No...It's just a birthmark…"

This lady then became super embarrassed and flustered saying, "Oh, well, I just thought that since it's

My fun knee caddy/scooter. I've
even decorated it a little more since
this photo. 

time for Halloween and some people...well...you know...yeah...Sorry about that." Holding back my laughter, with a smile I said, "It's ok - don't worry about it!" She then walked out.

After I was called back for my x-rays, the same (embarrassed) lady ended up assisting the person I was with. The poor lady kept looking at the ground and wouldn't even make eye contact with me. She even asked the x-ray technician if she "really" needed her assistance. I could tell she felt bad. And awkward. I actually began to feel bad for her, but didn't know what to say to help her feel better about the situation...and it really did take all I had not to laugh - so it's probably better that I stayed silent!

Before I had my ankle surgery and before Christmas break began, my mom had me get the flu shot. Although I got the shot - I can't say that there wasn't a lot of protesting on my end…But eventually, I caved. Probably a good thing too, since I work at an elementary school and get germ-filled snot and slobber on me constantly…Just thinking about it makes me shiver.

Turns out, I'm allergic to the flu shot! I had a red and feverish spot on my arm that kept growing, even a few days after receiving the shot. Eventually it became the diameter size of a baseball and mom had me call the nurse hotline for advice. The nurse on the other of the line told me to go to the ER and that I should have called about it sooner.

As I am called form the ER's waiting room to see the triage nurse, the nurse asks me what I'm there for. I responded, "I'm having an allergic reaction or something to the flu shot." Looking at my face and with a monotoned, yet tired voice, she pointed and asked, "Is that the reaction right there??"…What????

I mean, I guess that's a valid question. I don't know. She wasn't the only nurse who had that thought that night. Valid or not…I just laughed in disbelief and a part of me wanted to respond, "Yeah…because we all get our flu shots in the face, right?" But I didn't. I just held onto my laughter until I left the room and I just cracked up once back in the waiting room with my mom.

About a week later I went to an oral surgeon for a pre-op appointment for the surgery to remove the two teeth removed. We introduced ourselves, and with a smile he looked at me and asked, "Oh - you have Sturge-Weber syndrome, don't you??" (Which, honestly…I'm not sure how to explain Sturge-Weber Syndrome. I have it in addition to the birthmark, but it is caused by the birthmark. I haven't learned much about it, but from my understandings…it's basically all the complications that a port-wine stain can cause, like my glaucoma. Except, I have it easy in comparison to a lot of people with the syndrome.) Looking at him amazed, I told him, "Yeah…I do."

The oral surgeon got really excited. Seriously. He was like a kid in a candy shop!! I think I made is day by just walking into his office. Before pulling down a book to read about my birthmark and the syndrome, he commented, "I don't know the last time I operated on someone with Sturge-Weber syndrome. Actually, I'm not sure if I ever have…at least with it on the gums. I wonder if you'll bleed more, since it's caused by extra blood vessels. I'm quite curious!"

Even the kiddo (my cousin) likes to take
a joy ride with the scooter/caddy! Who
can blame her?? 

Confused, I asked him how he knew about my birthmark. He told me he not only went to a school to learn about dentistry, but also went to medical school to learn more about the face so he could be better
prepared as an oral surgeon and dentist. I then told him the story of the ER nurse, telling him that I am impressed he knew so much when someone in a hospital setting knew so little. I hadn't expected a dentist to know anything about it…at all…but it really felt good to know that he made an effort to learn and still wanted to learn more.

I didn't go back to have the two teeth removed for a couple of weeks. Once I had them removed, he told me to make an appointment for the next week so he could make sure I'm doing okay and to remove the stitches.

I didn't make it a week. Within two days, I was back in their office. The stitches were driving me CRAZY. Being so far back in my mouth, it would literally feel like I was swallowing a piece of string.

Going back into the office, one of his assistants greeted me and took me back to a room. As I sat in a chair, the lady looked at my face and wide-eyed asked, "Oh my!! Is that from your surgery? Did the doctor do that to you?? You should of called us sooner!!" I then explained that, no, the doctor - her boss - did not do that to me. (Knowing I was having a laser treatment within the next 24 hours, I wanted to say, "You think I look bad now?? You should see me after my laser treatment tomorrow!!")

Unlike the ER nurse, I didn't find this situation to be funny. I actually felt the opposite. It frustrated me and I felt annoyed with the lady. I don't really know what the difference was. Maybe it's because I was still feeling crummy from having two teeth removed, in addition to having my cast as I heal from my ankle surgery. Maybe it's because I am tired of people who work around people in a medical type setting being totally clueless, and not knowing how to be a more classy type of clueless. I don't know. But just like my laughter with the ER nurse, I held in my annoyance with the oral surgeon's assistant.

The oral surgeon then came into the room and started checking things out. As he did so, his employee basically "told on" herself, recalling the conversation and comments she made…laughing while doing so. The oral surgeon's expression said it all - even before his words of apology for the lack of sensitivity of the lady who works for him. His face held a combination of frustration, embarrassment, and disbelief. After he apologized, the lady continued to laugh as she said, "yeah…Sorry about that!"

Yeah. Okay.

When I tell the stories that seem to continue to pile up, my sister always tells me that I need to have fun with people. She tells me I should unleash the sarcastic responses that come to my mind in response to certain questions or comments. Really, if you could see into my mind when situations arise, it can be a fun and hilarious comic strip playing out…but I always hold back. And sometimes my sarcastic responses come to my mind a little delayed.

Although I always expect people to say things, no question or comment is ever 100% the same. Somehow, I am usually caught off guard. I mean, even though the ER nurse's comment and the comment of the lady who works at the oral surgeon's office were both similar…They were not the same. At all…Each catching me by surprise!

Maybe being sarcastic in response isn't the right thing to do. Maybe it is. Or, maybe it doesn't matter…Maybe I should decide if I want to be sarcastic, depending on the person, the age, comment, attitude, etc, etc, as I can usually - and very quickly - weed out who is genuinely curious and kind verses those who are just plain ridiculously rude. I don't know.

My Deaf professors are always sharing their stories of the crazy things people tell them or ask them, along with their quick-witted sarcastic responses they give to people…and I love their stories! I love how fast they with their witty responses and often wish I could be the same way.

Maybe you work in a medical office or dentist's office. Possibly you're a doctor, nurse, or a receptionist with no medical training. If you work in either of these settings and your'e reading my blog, please take at least one thing from what you're reading.

Everyday I have to go out in public and deal with staring. Nearly everyday I am put into uncomfortable situations caused by the general, awkward public.

I get that you may not know why my face looks the way it does. I get that you may have questions about it. Truthfully, I don't expect you to know a thing about it or to go out and learn about it. But when I walk into a hospital or dentist office? I expect and hope for a decent sense of professionalism from you.

Hospitals or any kind of medical buildings *should* be a safety zone away from nonsense. Realistically, in these settings - nothing should be assumed. I mean, come on! I can't be the only "oddball" you've met.

Expect different people to walk to your doors at anytime!! Sure, those of us who are "different" may get stares and off-the-wall comments from other people in the waiting room, but more than likely - they don't work in a medical setting. Fair or not, I set the bar a little higher for the people who do.

And although it may not be in your job requirements, I hope that you have the previously mentioned filter between your brains and your vocal cords. Think before you speak! Treat me with respect. Treat me how you'd want to be treated if you were in a similar situation. Think through your words, vocal tones, and the looks you give others.

You can ask questions. Just be kind and please think about the way you phrase them.

The Travelin' Chick,
Crystal

PS: By the way - if any of you near me need a recommendation for a great oral surgeon, let me know! I really enjoyed the guy I was referred too. He was really kind and had a great sense of humor as he signed my cast while I was knocked out during the procedure, and told me he took a ride with my knee caddy I use to get around.

Not-So-Normal

In my last blog posting I wrote about my dad going to the hospital.  I wrote about sitting in the ER, him getting sick, and how that is a normal at this point in my life.  It's becoming normal as it has happened many times this year.  My dad has been the ER about 5 times, hospitalized three times.  The illnesses are becoming normal...the doctors, the ER, the hospitalizing...

My dad went to the ER on Thursday but was sent home.  My mom and I went to the coast for the weekend, the whole time both of us concerned for my father.  We were hesitant to go, but he, however, urged us to go as it would be the last get-away chance we would have together before I leave for London.  He would also have my sister and brother-in-law to help him if anything occurred, as they currently live under the same roof.

When we returned home, dad wasn't doing well.  In fact - he seemed worse.  I won't go into detail here on my blog, but it was all quite concerning.  The symptoms and signs were not good.  Seeing my reality in front of my eyes made my mind flashback to March.  I flashed back to his past illnesses when he almost died.  I flash back to when mom had to call the 911 hotline.  It was not a good feeling.  It was almost like living it all over again.

Sunday night, right after mom and I returned from the coast, dad chose to go back to the ER because he wasn't feeling right.  When he got there, they automatically hospitalized him as he came down with double pneumonia.  His oxygen levels were so low his doctor's were amazed he hadn't started turning blue.

Here we are.  Back in the ER, back in the hospital, back to our reality...all to what is becoming our "normal".  I'm still thinking that the hospital needs to buy some VIP recliner seats for each member of our family.

While all that is starting to become "normal", there are things that will never be normal.  The seriousness of some illnesses will never be normal.  Once the seriousness hits, it is a terrible and worrisome feeling.  Having my father almost die?  That will never be normal and it never gets easier.   It's not normal to be able to say, "Yeah, my dad almost died three times this year.  Each time from something different, but each time from a type of infection."  Living a life that inconstant in regards to his health?  Again, not normal.  When dad gets sick again (really bad kind of sick) and I start to have flashbacks and start reliving past experiences?  That may be normal...I'm not sure...But I know it doesn't feel good.  It doesn't feel like it's normal to have to experience any of the experiences and then to also relive them every time an illness occurs.

If you read my last blog entry (Normal to Feel Normal?), you may be asking, "How are you doing now?"  I've been better.  To summarize it...It's been a rough week for our whole household.  It's stressful, worrisome, and tiring.  We thought we were though the worst of the year, hoping and praying things were looking up, and here we are...right back to the starting point of our rough year.  (Maybe it'll end where is started??)

Dad is still in the hospital.  Yesterday my mom said, "He is still in the woods, but the trees are thinning."  Today the trees have "thinned" even more.  The doctors have been running tests and are impressed with his progress.  It feels good to know he is hiking out of the woods and I pray that dad continues to do so.  Thank you for praying with us and for us.  Please keep the prayer coming our way.

The Travelin' Chick,
Crystal

PS: If you missed my Facebook status update yesterday, I have made decision.  I've decided and realized why my family is in the hospital so much this year.  My theory?  I must be destined to meet and marry a good-lookin', kind, and single doctor.  We just barely keep missing one another in our paths...Not that being a doctor is a must for my future husband...but this theory...It's possible, right?? Although, I think it would just be easier to join a dating site and require only doctor's to respond to my profile.  It would save a lot of heart aches, fear, energy, time, and money.  Ha ha ha...Kidding.  ;-)

Normal to Feel Normal?

This evening my mom called me as she was out and about as she often does.  This time, however, was different then her, "How are you doing?  What did you do for dinner?" type of phone calls.  Instead she broke out of our  usual conversation and told me, "Your dad called me from work.  He told me to come and get him - he is sick."

Before I continue, let me explain something.  My dad is a strong man.  Even when feeling ill, he finds some hidden strength and pushes through.  Only once in my life do I recall him calling in sick for work - and that was within the last month or so.  Never has he called my mom to leave work early after driving himself to the location of his job.  While feeling well or ill...he pushes through and holds on to his responsibilities, even if it requires working double shifts.

By sharing that bit of information you now know that my mother calling with that news was unusual.  After talking to me, she went and got my dad taking him directly to the ER.

The hospital actually got him in rather quickly.  If you were going to have an emergency that requires the ER, tonight was the night.  Once I got to the ER there was at least an hour's time of which I was literally the only body in the waiting room.

Turns out dad has another infection.  The first decision was to hospitalize him.  They don't know the type or location of the infection, but they do know it's a serious one.  (Although from what they can tell, not as serious as one he had in March of this year.)  When I left they were talking about releasing him to go home.  (Which they've done that before but made him come right back a few hours later after getting test results.)

I got to the hospital around 9:45 PM and left around 1:30 AM, getting home around 2:00 AM.  When I left mom was still there and dad was still in the back as they still have yet to determine what they want him to do...Go home, or stay.

While being in the waiting room my mom let me play with her iPad.  Doing what a typical young adult does, I got on the free WiFi of the hospital and got on Facebook.  While on Facebook I chatted with 4 or 5 friends to give me something to do as it was too late to text "my usual people".  I can't remember which friend asked me first, but they asked, "How are you doing??"

That's when it hit me.  How am I doing?  That was a good question and one I didn't quite have a quick answer for.  I hadn't yet thought about how I was doing.  Thinking back to March, I could tell you how I was doing then when 911 was called and dad was taken away from the house in an ambulance.  I was a mess.  Thinking back to March I can recall the emotion of fear flowing through my veins.  Once the ambulance left and mom followed in her car, I remember being home alone taking the whole scene in (before leaving myself), soon to be followed by being doubled over in tears in the middle of our hallway.  There were countless tears I shed that night before heading to see my dad.

How am I doing?  This time around it is different.  At this point it seems almost routine and normal.  I've seen about as many movies in the theater as times my dad has been hospitalized this year - if not less than the times he was hospitalized.  If you look at how many times our family has visited the ER (not cancer diagnoses, surgeries, hospitalizations, or the death of my niece), we have been to the ER at least three times the amount of movies we have seen this year.  We've been there enough times in 2011 alone that I've just about decided they should have V.I.P. recliner seats for each member of my family.

This time when mom called to tell me she was taking dad to the ER, I started to shed a tear or two thinking, "Not again...", but stopped myself to ask my mom, "What do you need?  What do I need to bring you?"  (Granted, my reaction this time may of also been different than in March because in March I saw how bad my dad was, which was worse than tonight.  From what we know right now, the situation in March was a lot more severe as we would of lost him that night had we waited just one more hour to call 911.)

To actually answer the question, "How am I doing?"  I still don't know.  This is routine and normal now.  I'm not sure if I've either numbed this part of my brain and heart for it to hurt less, if it's just that I've become stronger through all that I've been through this year, or if I've not completely taken it in that he's back in the ER.  I'm not sure if my mind is waiting to react until we know more details of the infection (severity, type, etc) or if God is just giving me a peace about the whole situation.  Any of those are possibilities.  In fact, it could be a combination of all of the above, or a mixture of certain ones.  

Is this normal for this to feel normal?  For it to feel as though it's part of our life and routine?  Is it natural to numb myself to the situation?  There are other questions that come to mind but those are to just name a few.   I've had a few unique situations in my life where it's hard to find people who have been in similar situations. (Example: The death of my niece.  It's hard to find people who have experienced the lose of a child from an aunt's perspective.  In the past I've even Googled support groups for the aunt/uncle perspective and there are none that I could find.)  However, while I know there have been unique situations in unique combinations, I do know I must know people who have had a sick father or sick mother in their lives.  It's a more common situation for people to experience and yet I have no idea which of my many friends have gone through a similar situation.  (And although common, it doesn't make it any easier.  Having a sick parent is a tough thing, and I imagine that goes for a child of any age.)  It's amazing what you learn about other people when go through different trials and situations.

Although it feels routine and normal I can't help but ask myself, "When did this become our way of life?  When did ER visits and dad's ill health become so normal to me?  Is this really our life now?"  And although it feels normal and routine, I still do have emotions, fears, and dreams attached to the situation that I've had since being 15-years-old when his bad health started.  I dream my dad will still be here to see me graduate college.  I dream he'll be here to meet the man I fall in love with, that he'll be here to walk me down the aisle as I stand next to him dressed in a beautiful white gown.  I dream he will hold my future children, his grandchildren. At the same time I fear my dreams are truly only that - a dream and not reality. 

I'm not much of an emotional person.  Okay - I take that back.  I'm not an openly emotional person.  If I want to cry, I usually wait until I'm in private and am all alone.  I let myself break when no one else can see me or hear my cries of pain - whether it be physical, spiritual, mental, or emotional pain.  Even when my niece died I was like this with family.  My grandfather, of whom I love dearly, asked me, "How are you doing?"  Instead of telling him the true burdens and pain on my heart I hid from him the honest cries of my emotions telling him, "I am fine."

This is something I am really trying to work on as I realize it's unhealthy.  I know of a few reasons in some situations, but I'm not 100% sure why I hide and ignore what I feel, especially around others.  I'm trying to be more open with my feelings and to be honest with family and friends that I know genuinely care.  (Obviously I'm not going to tell a random stranger how I feel, but when friends or even family ask, I want to be more honest and to not feel ashamed or as though I need to hide the feelings I experience and have.)  For me this blog is a start.  While I don't open up about everything on this blog (as that is not what is for as some situations, emotions, or feelings, are meant to be private), I want to open up some.  

How am I doing??  Ask me tomorrow (which I guess is technically now today).  Ask me once I get some sleep and once my dad's third infection of the year sinks in deeper.  Ask me when we know more to the situation.  My answer may be different than my repeated answer of earlier tonight, "I'm okay.  This almost just seems like it's routine and  normal."  Once sleep is in my system and we know more details, it may not feel as routine and normal.

What is your story?  Please share with me via message, comment bellow, on FB, text, or call me (there is a "Contact Me" page above).  I would love to hear your story and your experience.

Tonight was an eye opener.  Even if my family is currently done with cancers, tumors, and most surgeries, my dad's weak health and ER visits are and more than likely will forever be apart of our life and routine.

Oh, and is he hospitalized or coming home?  I've already posted this blog, so this is an update, but as of Monday, December 12 - He was taken to the ER once again.  This time he has been hospitalized with double pneumonia. 

The Travelin' Chick,

Crystal

PS: Thank you for the prayers for my dad, me, and my family!