Finally Getting an Appointment at Stanford Hospital

Once upon a Time,
There once lived a happy girl with long flowing dark hair, who had been in pain and misery for quite a long time. She suffered from horrific sinus headaches and cluster migrains. which left the girl saddened. She had spent a whole year getting all of the necessary Dr apointments, insurance, referral letters and information she needed. Dozens of messages were left but none were returned, and she was losing hope. However on one warm early spring day, she received a phone call, a schedule had been made in her name. and the girl was happy.

I have good news dear readers; tomorrow is the day. No not for my surgery, although I wish it was, then I wouldn't have to wait til another semester of school to pass before I have it done. But tomorrow is the first day of my appointment in Stanford for my consultation. Tomorrow we get to make a trip of it, my husband and I, which all of my Stanford visits always end up being because its a few hours away from us. This is how it will go: We will get up early, probably stop at the In-and-Out once we are there cause we will be starving. Then we will drive to the hospital, search for the right parking lot, perhaps passing it a few times before we figure it out. We will enter the front doors and will be greeted by that distinct Stanford smell. You know the one I speak of, all hospitals share that distinct hospital smell. but Stanford has one all its own. I will check myself in with the person behind the desk, as they tell us to have a seat. Ricky will help the time pass by quicker for me by making me laugh, usually by making fun of something in the room. Then my name will be called and my heart will skip a little beat as the nurse leads us to a room where more waiting will proceed. Then, when the moment has presented itself we will meet the man himself the Doctor who will be preforming my surgery. There I will sit face to face with the professional that I will finally get to unload a years worth of questions on that I have been dying to ask. I will hand him my Cat Scan that I so proudly scrounged up at the last Minuit (Im actually picking it up from the hospital sometime after 1pm today). And well, dear readers that's as far as I am able to predict, cause honestly I have no idea whats going to really take place. I haven't had a surgery on my sinus cavities, ever. But one thing I am certain of is afterwards Ricky is going to take me to Starbucks because, well, the day just wouldn't be complete without one.


So I know Tomorrow isn't the surgery. But it lets me know that I am one huge step closer to receiving the help I need.

The Story of When I Broke My Left Femur 3 Times: A Story Of Hope

Dear readers,

I'm sure that you have read on my blog that I have broken a total of 9 bones in my lifetime starting from age 12. Well 3 of those breaks were just in my femur. Yes I have broken my left femur on 3 completely different accounts. The first time I broke it I had a metal plate put in and was bed stricken for six months. I spent those months flat on my back in a Spica Cast. For those of you who do not know what a "Spica Cast" is, its pretty much a body cast. It went from just beneath my chest all the way down my left leg to my ankle, and down my right leg to my knee, and it had a big metal bar from each leg to connect the two and to prevent any movement. I couldnt sit up, not even to eat, and it made it very diffucult to breathe. Many months after the cast was taken off I spent time with my physical therapist trying to learn how to walk again with crutches.

The second time I broken my femur was actually caused by the stress that the metal plate had put on my femur, and it broke just below the plate. I went in again for surgery although this time they took the plate out. And yet again I was in another spica cast for the same amount of time. Although this time I wasn't at home, I stayed all alone at Shiners Hospital in Sacramento, an amazing hospital for children with rare diseases. and there I received all the medical treatment and help I needed. My parents did drive up to visit me on the weekends, until I couldn't handle being all alone anymore and my mom took a leave of absence from work to stay with me the last few months. Then of course after I healed, I went back to crutches and physical therapy, which took just about as long as it did for my bone to heal and was just as painful.

The third time I broke my femur I was sent to Standford Hospital where they drilled a long metal rod down the center of the marrow canal of my bone. (now as I have mentioned on my blog before, my marrow canal is smaller in diameter due to the dense and extra bone growth and lack of osteoclasts eating away the old bone) so it was much more difficult and they had to use a thinner rod than they wanted cause my marrow canal is so small. But because of this rod I did not need another terrible spica cast! They wanted to send me home for complete bed rest and no movement for the same amount of time as before, but this time around the pain was so much more severe that they kept me at the hospital longer for the proper attention and medication. And i think you can pretty much figure out the rest, I was sent home eventually to be completely bed stricken. and then months later I went back to physical therapy.

Now I guess you might be wondering why I am posting all of this today? I guess it was just on my heart...Sometimes my left leg gives me a lot of problems and hurts for no reason at all. And today is one of those days. Its pretty painful and its causing me to limp pretty bad cause of the pain. It helps to get it all out and be able to share it with someone, or no one, I don't know if anyone will read this, I don't even mind if no one really cares. I just wrote this to make me feel better, and to give hope to someone out there that might be like me who will read this, and they will know that there is someone out there that knows what they are going through. =)

This is just one of the many reasons that I must rely on God for my complete and total strength day by day. I truly believe that I wouldn't be as physically able to walk like I can If I didn't have God in my life. He is my strength, he is my total dependence. I know all of this doesn't just happen for no reason at all. There is a reason I have this disease, there is a reason that I go through all of the physical ailments and trials that I do. I may not know all of the reasons, it may be emotionally shattering and I may get discouraged at times, but I do know that it is so God can use to me to help others. So be encouraged if you are like me, whether you have Osteopetrosis or any other physical problems or disease. God is there for you, and He wants to use you. He knows everything about you, He made you. and He is allowing it for a reason. You may not know what the reason is. But give God the glory for everything that He does for you. You can be an encouragement to someone else who has what you have. Just know that there is a reason for everything, and that God is in control.

*The picture above is not a picture of my femur, but its basically the same thing that happened to me except my breaks were always a little higher*

Going on a Trip to Massachusetts

Sept 3, 2010

So the next two weeks are going to be so much fun! First were doggie sitting  this three day weekend for friends who have a hot tub and a back yard that gets lots of sun! (major bonus). Then Monday I get a hair trim and style, I'm super excited because that always makes you feel refreshed and every time you catch yourself in the mirror you do a double take lol. And then of course Tues I have school...But then Wed Ricky and I get up at like 4am to drive to the San Jose Airport, and I get to ditch school, to Fly back east to Massachusetts for a week!! Were going back there for his cousin's wedding! And while were there I get to meet a bunch of Ricky's family members that I have yet to meet! and they are all so excited to meet me! I'm pretty sure I'll come back to Monterey with a Boston accent, because whenever I'm around people with an accent I just cant help but talk like them. And I'm pretty much going to go picture and video camera crazy, because I love towns with four seasons, warm summers, and trees that change colors in the fall, with leaves that get crunchy. And of course we don't get that here in Monterey, its always cold and Evergreens never change. So I think if Ricky wants me to come back to Monterey with him, he's going to have to loosen me from my kung-foo grip that I will have holding onto a tree with my entire body begging to stay.

The Best Two Years of My Life

Aug 9, 2010

I just celebrated my 2nd wedding Anniversary with my husband Ricky yesterday. I am so proud and blessed to say that he is my husband of two years. I love him dearly with all of my heart and with every fiber of my being. He is the greatest blessing in my life. I know that God sent him to me for a reason for he is exactly what I needed. And Ricky, I want you to know that nothing could ever take your place in my heart, our marriage and our life together is for forever.

I Surrender All to You

Aug 6, 2010

I had a really great talk with my husband last night. But in order for you to understand what it was about, let me back track a bit...

So just recently my husband has discovered the wonders of rock climbing and has been going to the rock gym practically every day since he has a membership. He just loves it and always comes home so pumped! Just the other day he brought all of his friends with him and now they’re pumped about it and want to all get memberships too! Well my husband and I have been going back and forth about whether or not I could or should go Rock climbing, because I have to be much more careful than the average person, which means limiting my activities to lower my chances of breaking something. Let me just tell you that no matter how physically limited I am, in my heart I am a very physical and competitive person, and I desperately long to do every single active sport or activity there is! If someone is doing it, I cant sit on the side and watch, I have to do it too (even though I shouldn’t so obviously don’t). I was even a gymnast who was about to go onto nationals and then I broke my leg and found out that I got diagnosed with Osteopetrosis. I was devastated. Soooo I got all pumped up about rock climbing and wanted to go too! Then Ricky, being the loving and protecting husband he is reminded me that I probably shouldn’t, because I could slip and bang a limb into the wall, fall, or anything. Mind you he is not one to be overprotective at all so when he says "no" to something, he has a reason. Well I took this hard, cause I want nothing more than to participate in fun activities that others around me are enjoying so much. And its been like this ever since I was diagnosed with Osteopetrosis. Its hard sitting on the sidelines, knowing that that’s where you have to stay and watch everyone else doing something that you want to do too.


Well back to my talk with Ricky. We were driving home late last night, the subject of rock climbing came up again and I kind of had a melt down…I was sad and frustrated that I couldn’t do something else yet again. And then pulling into the parking lot of our apartments, there we sat in the car for two hours just talking. And then Ricky said something that totally changed my outlook on how I see my situation. He said, “You are the happiest person I know, that’s why I married you. But almost every time a physical activity is mentioned that you cant do, I see you plummet and get dragged down. Wouldn’t you want to live life completely happy even though your limited in the things you cant do? Because a person’s life has the ability to affect someone else’s life. What if every time you couldn’t do something you got sad and dragged down, and someone else with Osteopetrosis, or any disease, or someone with no disease at all, saw the way you reacted about your disease, and they were influenced by your behavior and reacted the same about a situation in their life? But what if you didn’t let your physical inabilities drag you down and you stayed joyful like you always are, then how much of a better influence would you have on somebody who is watching you?”

…I think from now on, after what he said, I will definitely look at my life and physical activities differently. Granted I probably will most definitely have my moments of weakness where I will get sad about not being able to do something. But I will always re-entrust my body and mind to God, who is my strength physically, emotionally, and mentally. No matter what happens God is in control, and all I need to do is just be thankful and joyful for my life that He has given me, and not worry about what I cant do, because I am truly blessed.

Happy Birthday Ricky Poo!

July 24, 2010

So Thursday was Ricky's (my husband) 24th Birthday! And the night before I had a plan: I would pretend to go to bed, wait for him to fall asleep, where I would then proceed to decorate the entire apartment with happy birthday banners and balloons so he would have a nice surprise when he woke up that morning! Well, what really happened is he fell asleep on the couch and I couldn't wake him up if my life depended on it! and the more and more I tried to wake him up the more he got upset ( he was so exhausted I wont hold it against him lol). So here I am getting more and more tired, I want to go to bed, but I have to decorate first! So I finally get him into bed, hes mad at me, and I'm all sad and frustrated cause he doesn't know what I'm planning. So I lay in bed with him for a while, finally he falls asleep. I get up, decorate, put the banner up, blow up all the balloons, get the coffee ready for him in the morning, make him a birthday card/note that he can read before work, and as I am blowing up the last balloon it POPS! I was like ooohhhh nooooo! I was thinking, "that's it! he's going to wake up, be all mad because Im making so much noise, ooor he'll think it was a gun shot and be all worried; either way the surprise would be ruined!" haha well Thank goodness he was so tired he didn't even hear it! haha so the next day he tells me how awesome it was waking up to all the decorations before work, and he didn't even know what he did the night before and how he was impossible to wake up.

later that day we had his birthday party. It was so much fun we went to the beach, had a bon fire with awesome friends. I made a brownie cake for the party (which didn't cook right cause I mixed two boxes of brownie mix together and put it in the oven lol), we had hot dogs for roasting and stuff for Smores! we nearly burned our entire bodies trying to roast our food over the ginormous fire with our tiny little roasting sticks (cause we couldn't find any longer ones at the store), played Frisbee, pet some strange dogs, and climbed into a "tunnel" that was really a sewer drain leading to the ocean. All in all it was one amazing day!

I also made my very first New york cheesecake from scratch just for Ricky!! you can see it in the picture above. He doesn't like regular cake an just looooves new york Cheesecake! I think for Ricky it was the best thing I gave him for his birthday! =) haha that's right his little wifey can bake!

Dairy is evil

June 25, 2010

I hate dairy, its in everything, and everything it is in is usually delicious. But every time I eat it I get a bad headache (because of my sinuses), and I know this, so I've tried to eliminated it from my diet completely, and it's easy...Until my husband comes home with a cheese cake and he asks you to cut him a slice. Then you get some on your finger...what else are you going to do but lick your finger? Pretty soon you've had about 5 bites, you're thinking to yourself, "Oh my gosh what am I doing?" Yes I did that last night and even after 5 tiny bites I have a throbbing migraine today. To me, dairy is pure evilness, dressed as a lushes sweet temptress topped in strawberry glaze, and as soon as I partake of it, it reaches into my brain and kills everything good inside. Dairy, I'll miss you, but I guess, I won't miss you.

Hello High Blood Acidity, Goodbye Spicy Foods

June 9, 2010

Hello dear readers! Well I went to the doctors yesterday for a routine check up, and I complained about having pain in my chest and upper back. Well apparently I have a high acidic blood level, and the pain was heart burn. And if not treated the high acidity can cause ulcers. So my doctor prescribed me Prilosec which I must take everyday. I'm thinking "wow this is pretty random!" but it does explain the acid reflux that I have been experiencing. So after I got home I did some research on the Internet to find out whether or not it is linked to Osteopetrosis. Sure enough it is. At the website http://www.osteopetrosis.org/ I found that in Osteopetrosis patients, "The blood is slightly acidic and has a high chloride concentration (hyperchloraemic acidosis.) The blood acidity is caused by excessive leakage of bicarbonate from the kidney tubules (renal tubular acidosis)." Well, that's new information to me. So I guess I must be consistent with taking my Prilosec now, and stop eating spicy food! I don't know how I'm going to do that! One of my favorite foods is a good spicy plate of chicken curry. At least at the Chinese restaurant that I order from the curry is spicy, I don't think the Thai Chicken curry is spicy, so there may be hope after all. But Ricky (my husband) insists that I stop eating all spicy food! He is so good at watching out for his little wifey.

Apart from frequent bone fractures I never knew that Osteopetrosis could cause so many problems in just one little body. Oh well, The Lord is my Strength, and He will continue to help me overcome any and every obstacle that may come my way!

Vitamin D and The First Day of Summer vacation!

June 2, 2010

So, last night I couldn't sleep at all because my mind was working a million miles per hour thinking of all the things I want to do during summer break. Well Today is my first day of freedom and I'm so tired haha. I even have made a list of all the things I want to accomplish before fall semester comes around. I want to paint, I have so many blank canvases that I have accumulated over last semester that are just crying out to be used. I want to start drawing again, but not just with graphite or pencil, I want to go out and buy some high quality colored pencils and explore with colored drawings =). I also have a goal to find a really great book and read it over the summer, I'm thinking Jane Eyre, do you have any suggestions for me? And I seriously just want to take a whole day to do nothing but lay in bed and watch TV shows and movies. I also want to go camping with my hubby and friends, and then go down to LA and visit my sister. oooh man I have such high hopes for this summer, I reallyyy need this time to decompress from everything.

As far as the health aspect of my life, I have been taking vitamin D supplements for about 2 weeks now. I was researching my disease some more and found a little something that mentioned how taking Vitamin D may help stimulate my Osteoclast cells! Well this made perfect sense to me because as a pre-nursing student I am learning in Anatomy that your bones store calcium, and when your organs and intestines need Calcium it is the Osteoclasts' job to resorb (take out) the Calcium from the bones and send it into the gut where it can be used. Well! vitamin D is the one responsible for telling the Osteoclasts to resorb the Calcium, thereby stimulating the Osteoclasts! Well, who knows if this will actually stimulate them in my case, it may be something a lot more complicated than that, but it never hurts to try!

I Am Forever Unbreakable: by Lynsie Petig

May 27, 2010

I will not surrender, I will not break

This burden on me will never take


Fragile or weak are the words some might use to describe me

But my strength is found in The One Everlasting


In my heart and in my mind

You will never find a fragile disposition of any kind


This world may break my physical self, leaving me feel depleted

But my spirit cannot be broken nor, can it ever be defeated


I may endure pain and my heart may momentarily ache

But I am invincible despite what some might think


I will never fail to rise again

No matter the challenge, I will always win


When you look at me don’t perceive fragility

For my spirit is threaded with a woven pattern of invincibility


So Look at me and see strength, and let your vision be stable

For I am now, and forever will be, unbreakable.
 
 
by Lynsie Petig

Scheduling A Surgery

May 25, 2010

Wow, so its a longgggg and tedious process scheduling an out patient surgery! All the surgeries I have had  have all been emergency/in patient ones. Plus, when your special bone Dr in Standford says to you that you can only have surgery by a highly specialized ENT (ear nose and throat) Dr. because your case is so rare, but your insurance will only pay for a crappy Dr down here It get even more complicated (seriously they're not the best down here, they're only here so they can play golf in pebble beach. Of course this is just my experience, I'm sure there are good Doctors here I just havnt had the pleasure of seeing them). Although, my insurance stated that they will cover my surgery at Standford only if they have written proof that my Dr actually said that I can only have surgery up there. So that's what I am doing now, calling Standford and leaving billions of messages for people to call me back, and people are getting all confused about what this letter is....Ive been very clear about what this letter is, I mean you understand don't you?

More on the doctors down here: I once hurt my leg and just to make sure I didn't break it again I went to the local Hospital here. The Doctor looked at my x rays and mistook my old fracture for a new one and started planning a surgery and to put me in a partial body cast known as a Spica cast (which Ive had like a thousand times lol). Well what he didn't know was, that in Osteopetrotic patients old fractures don't heal fully like a normal break would. In a normal bone after it heals all evidence of a fracture is gone. But in my case you can still see the line on my bone where it had broken and healed. Turns out all I did was pull a stinkin' muscle, so yeah, my confidence about having surgery down here is shot. Id even give the guy some credit if it wasn't for the fact that even Doctors who are not educated about my disease can just tell by looking at my x rays that my bones are not normal, they just don't know what it is, and he didn't even notice that.

So for now the waiting continues, Ill update you on more when something happens lol.