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Monday, August 29, 2011

some secrets ive found to help with this disease...

so, this disease sucks. you gain weight for no apparent reason (btwn 60-80lbs in like 2 months), you work out like a nut but that doesnt help, your hair thins, you lose your hair, you develop stria, you have fat pads, you look pregnant, your muscles start to deteriorate, your skin thins, you itch all the time from the cortisol, it's harder to do anything because you're so tired all the time, you become depressed, you have crazy mood swings, you feel like crap most of the time... and there are days that you hate yourself and want to end it all. and? you start to hate the way you look.

that was my big thing, well, still kind of is. some days i just look in the mirror and want to break it. i dont look like i used to. some days its really hard to push through, but i do. how? i dont know. some days i just cry and cry and cry, other days i force myself to laugh and smile. it sucks, but it's doable.

so right, beauty things.

Jergens Moisturizing Body lotion/ self tanner. It gives your skin a natural glow, without leaving orange streaks. Since we cushies cant be in the sun for too long, it's nice to not look so pale, plus it helps cover some of the stria.

Avons moisturizing lotion: for those who dont care about the tan. it's fabulous and calms the skin, unscented and doesn't leave a rash.

Triamcinolone cream. I got this from my dermatologist, it helps with the breakouts/rash while moisturizing. It also helps to relieve the itching.

Mary Kay has a timewise facial cleanser, moisturizer and day and night cream. Fabulous stuff. My skin feels incredible. Since our skin is so sensitive and delicate, it helps to keep me look refreshed.

HAIR LOSS: this is a big one. our hair thins and falls out, one of my biggest fears for after radiation was that I was going to lose it all. my mom bought me nioxin, it helps with hair growth, and it's working! so far so good.

dry scalp: from the radiation my scalp was dry and itchy. it drove me bonkers. i was afraid to touch my head bc i didnt want to risk pulling my hair out. so, im flipping through my moms womens world and it tells me to mash up two asprin and mix them into my shampoo... i havent itched since! and my scalp is alot calmer... who knew?!

the bump it: i know... i thought they were pretty lame too... but... i can't cut or dye my hair and it's not working for me... so i caved. bought the generic at the dollar store and it works! you couldn't even tell i had something on my head! i went to a friends wedding and actually FELT pretty, something i havent felt in months. it was a good feeling.

aloe juice- pour a shot of that into juice or soda or whatever you want... it helps with the itching!
painting. just something i started to do. it helps occupy my time, and i feel accomplished. im not too good, but im working on it. this whole having to relearn everything sucks.

when i say relearning i mean: walking, talking, focusing, writing, reading... it's hard... but im doing it.
i guess those are all my fun things for the day, hope it helps!

did you think we'd be here a year ago?

that's what chris asked me, as we danced at laura's wedding... my response? nope, i thought id be dead by now...what a beautiful day... no seriously. so what, there was a hurricane. i woke up next to the most amazing man in the world, well, third next to my dad and brother, and we got to see my babygirl get married. the pain ill feel tomorrow will be well worth it :) Laura looked absolutely stunning, and Doug looked so happy... and don't get me started on Blake! Watching Laura walk down the aisle with her dad... I couldn't stop the tears from falling. Laura and I have been together since we were 6/7 years old... she's not just my friend, she's my sister. and watching my other dad give her away... beautiful. I couldn't help but squeeze Chris' hand. He was kind of emotional too. Such a beautiful ceremony, for such a beautiful couple.
Chris pulled me onto the dance floor, surprise surprise, and asked me, did you think a year ago, you'd be here? and honestly, no. I thought i would be dead, or something else would be wrong. what a journey i've been on... it's been absolutely INSANE! black outs, a broken foot, blood clots, brain surgeries, meeting Danny Gokey, meeting Hanson, getting engaged, having radiation... and that's only in the past year! CRAZINESS I TELL YOU! but... im truly blessed. I've been able to weed out the bad apples in my life. I've also grown closer to some people, and rekindled old friendships. I love my life, I really do. I know some days are really bad and I can't help but be depressed. I AM DEPRESSED. I have PTSD. some days it's harder to crawl out of the darkness than others, but I can tell you that I always will crawl out. I have too much to live for in my life, but some days it's hard to come to grips with everything. This past week alone I've actually spent HOURS and DAYS crying. But it's ok, because that's part of the grieving process. I just felt like being sad and falling down, meant a setback, but apparently it's ok and I shouldn't be so hard on myself for getting upset with missing the life I've lost. And you shouldn't get mad at me either, that's just not fair. You don't know what it's like, or the life I'm living or the life I've lost.
Did you know that I have to relearn pretty much EVERYTHING and I feel like I'm 5 years old? no, you probably didn't. Do you know how hard it is for me to read or write? Nope. How bout driving? Or even walking. I fall over. I fall into things. I can't always see where I'm going. I'm very off balance, but you didn't consider that did you. I have an incredible fiance, who, has to deal with insane mood swings. I yell. Then I cry. and do you know what he does? Holds me and tells me everythings gonna be ok... I would have left myself, but he stands by me. I sit home, every day, because I can't go anywhere and I can't really do anything. I have started to paint, which I really enjoy and is helping me to focus and be proud of myself. Yeah, let's talk about focus and how I can't really concentrate on anything for more than 10-15 minutes. Or how I talk superduper fast because I'm afraid if I don't say everything that I want, I won't remember. Memory... that's a fun thing. I don't always remember people, places or things. That's fun too.
But you can go ahead, sit there and get annoyed with me because I have bad days, because I cry or because I get angry. Go right ahead. You don't know the pain I'm in CONSTANTLY or how i HATE taking pain killers... but i have to. Or how I'm not working, and yes, I miss it. I do. I absolutely LOVED what I did... why? because I knew I was making a difference in the life of a child, or a family. Sure, they don't always appreciate what we do, when we do it... but they do. My job is what made the tumor grow second time around, but, when you lack a support system in your place of business, especially when it's high stress, what can you expect? And NO, i don't care if im offending you. I cut out pretty much all of the people I worked with because they let me down, hardcore. What did my unit decide before I came back? Oh right, "you're really negative, you don't appreciate anything anyone does for you, you have a low self esteem and you need intense therapy" Gee thanks Placement Unit. If I remember correctly, I was the FIRST to jump for ANY of you- birthdays, thank you cards, pick me ups, whatever, whenever. I believe Alison even put that in an email to the ENTIRE office when she wanted you guys to sign a card for me. Hmmm... not like any of you will see this since I blocked you all, but whatever. Feels good to get it out.
So anyway... I absolutely love Chris. *warning, this section may make you pukey if you're not a mush* He is... just... incredible. I loved him when I was 16 and I love him even more now. He stands by me, regardless of how sick I get, how sad I get, how angry I get. He takes care of me. He says it's ok for me to need him, to lean on him, that he's going to support me. I just... how the hell did I get so lucky? Some days I just... I want to walk away because he deserves so much better! He is by far the most wonderful person I know. He's so caring, compassionate, full of love and understanding, he talks to people, he is a genuinely GOOD person, and those kind of people are hard to come by. EVen if we weren't in love, and getting married, I'd be so blessed just to be able to call him friend. I've always felt that way. I always referred to him as my favorite ex boyfriend, because he didn't do anything wrong, and he was incredible then. On our second first date, before we went our seperate ways, I said to him "do you know how wonderful you are? no seriously. you're like the most wonderful person i know". and it's true. anyone who gets the chance to meet him, is truly blessed because they will never meet anyone as amazing as him, ever... and I get to marry him :) and when I'm better, I'll be able to fall asleep and wake up with him EVERY.SINGLE.DAY. how lucky am i?
and i met hanson. let's not forget that. and taylor kissed my cheek and said he was glad im alive. HELLO! that's totally worth getting sick! haha
and Danny Gokey... he is just.... phenomenal. Listen to his music. and he's not bad on the eyes either, I told Chris if I wasn't going to marry him, I'd marry Danny... lol
And my family, they're some pretty awesome people. I'm so lucky to be a Velardi/Gilliam/Velli/Close girl :) I don't think I'd be where I am without them. My mom and my sister are my best friends. I know, my sister? haha. Anyone who knew us just fell over, but it's true. She's my rock. My aunt is pretty flippin awesome too :)
and my friends, the ones who are TRUE friends. What, there are like 600 of you on my friends list but are we really friends? not really, more like aquaintances, but that's ok. I don't mind. But my TRUER THAN TRUE friends, have been incredible through everything and every day I'm amazed...
but then there are those friendships that are dead. People who I thought were ride or die, are pretty much sucktastic and I have nothing to do with them anymore. EIther they let me down or, turns out, I was the one who was making the friendship work. I would make the phone calls, make the plans, send the cards, etc. But seriously, why should I have to be the one to do it all? Friendship is a two way street. Why should I be the one to make it work? I'm over it. So, should my list of 'friends' dwindle, I don't care. Wait no, I'm lying. Because I do care, I'm just tired of it. I'm sick, not dead.
Hmm... I dont know that there's anything else for tonight, I'm just so happy I got to watch my girl get hitched today, to her best friend. And i'm looking forward to next September when she gets to watch me marry my best friend

30 things about my invisible illness that you may not know

For invisible illness awareness week!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Cushings Disease: I have a tumor on my pituitary gland which causes an overproduction of cortisol, which is the bodies natural steroid. my body produces 8x's the amount that yours does... only 1 in 500,000 have this disease...
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: probably high school, but they really started appearing the past 4-5 years. but the drs just said i was fat. and needed to diet. and exercise. so i did, but it didnt help.
4. The biggest adjustment I’ve had to make is: that I have to let people help me, let my guard down and trust people to be there. I'm not as independent as I was. I can't work or go out whenever I want.
5. Most people assume: That everything is fine because I'm smiling, or that I don't need people to say, how are you? or ask me to hang out. why do I need to keep our friendship going? I'm tired of it, and I'm done doing it. 6. The hardest part about mornings are: trying to wake up, walking
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My crackberry
9. The hardest part about nights are: falling/staying asleep. Not scratching myself to death. The stria itches like crazy
10. Each day I take __ pills & vitamins. (No comments, please) I take about 15-20 pills a day
11. Regarding alternative treatments I: I LOVE reiki and I love @thehealingpath
12. If I had to choose between an invisible illness or visible I would choose: It depends. No one believed my headaches until I had the crainiotomy and had half of my head shaved! But then again, certain bitches decided that I threw myself down the steps to break my foot so I could get out of going to work and I could go to the beach.
13. Regarding working and career: I miss working, but there's no way I can go back right now. I need more treatments, I can't drive long distances or focus for long periods of time. I don't know that they care that much either. But I would like to be doing something. 14. People would be surprised to know: that I feel broken and I fear being a burden to my loved ones. and that I feel ugly... I know it's crazy but... it's true.
15. The hardest thing to accept about my new reality has been: I cant see out of my right eye and I keep walking into things, or I forget alot bc of the brain tumor/surgery
16. Something I never thought I could do with my illness that I did was: Fall head over heels in love with the man of my dreams
17. The commercials about my illness: there are none.
18. Something I really miss doing since I was diagnosed is: going to the beach, going to the bar, dancing, laughing, hiking,
19. It was really hard to have to give up: im a busy bee! i always do lots
20. A new hobby I have taken up since my diagnosis is: relaxing :)
21. If I could have one day of feeling normal again I would: go to wildwood, ride the coasters, run in the ocean, have a few margaritas, dance the night away
22. My illness has taught me: that I don't have to be so strong all the time. It's ok to let people in. I've also learned who I can and cannot count on.
23. Want to know a secret? One thing people say that gets under my skin is: It's gonna be ok. or how's your eye? or... my favorite, you mean you really cant see?24. But I love it when people: send me random messages saying theyre thinking of me. or cards. i love cards.
25. My favorite motto, scripture, quote that gets me through tough times is: never lose hope. never lose faith. never ever give up.
26. When someone is diagnosed I’d like to tell them: this sucks, but we can get through it together.
27. Something that has surprised me about living with an illness is: that it's not so bad relying on other people. and I love my cushie friends.
28. The nicest thing someone did for me when I wasn’t feeling well was: surprise visits at the hopsital :) my team nicci jersey crew coming out here to take me to dinner, jennie having her 25th bday by MY house bc i couldnt go an hour 1/2 away
29. I’m involved with Invisible Illness Week because: people need to know it's not so easy being us.
30. The fact that you read this list makes me feel: that maybe you really give a shit :)

a glimpse into the past year 5.30.2011

i posted this in my cushings support group. most of you have NO clue as to what im going through. alot of people judge me, think im sittin home having the time of my life. of course im gonna smile through the pain asses... it's what ive done all my life. you think im gonna let freaking almost dying a few times stop me? ha. funny. but seriously, it sucks. but read. see. eff the haters :) you just make me fight THAT much harder!

about 4-5 years ago I went to a dr about my buffalo hump. her response? you're fat. you need plastic surgery to get rid of it (i was about 4 sizes smaller at that time. fat? ha no) i worked out like a crazy person. ate like a bird. very health conscious... as time went on... i was gaining weight. i saw a difference maybe 2 years ago, my face was rounder and i had gone up a size or 2. i thought it had been because of the relationship i struggled to get out of (i was being beaten)... but no one seemed to be able to help. i work a very high stress job and had a crazy emotional relationship. i was having blackouts and not remembering who/where i was or what things were. my speech was starting to slur too. but, the drs thought it was the seraquel. i went to the emergency room, they did a CT and told me it was all in my head, nothing was there, gave me some tylenol and i went home. so? i weaned myself off the pills. and then what? i fall down my inside steps out the front door and down those steps, "spraining" my foot. do i remember? nope. another black out. the ER said it was a sprain. great. so im out of work for a week or so. and the girls at my job? yeah, think i did it on purpose to go to the beach. did i go to the beach? NO! i cancelled my trip because i was BROKEN. wtf. i swear. anyway, so i start walking on it, go to six flags and for some reason all of the upside down coasters arent working... interesting... so my foot still hurts. i go to the foot dr... guess what? ITS BROKEN! it WAS broken before and the hospital misread the xray. gee thanks. so i get casted and im out of work for a few weeks. and then... this EXCRUTIATING pain in my leg... i call the dr every day and the secretary tells me that i need to take my pain meds and this is normal... so normal that i had a 102 fever and was throwing up? i dont think so. i make them see me. he cuts off my cast. guess what? BLOOD clots in my leg. great. so? im out again. dr says if i have pain in my chest go to the er. im asthmatic... i always have pain. but whatever. i showered. shaved. did my toes and went to the ER the next day. guess what? clots in my lungs. fanfreakintastic. and then? im in the hospital for a few days. then im home bc my dr went on vacay and couldnt sign me back to work. and then these headaches, omg. so i call the dr and he has me come in to make sure there are no bleeds in my brain. no bleeds... but he saw the tumor. like my life wasnt sucking enough, lets add this to the mix! it's bad enough i had been cheating death the past 3 months... so i do the MRI... tumor the size of a QUARTER on my pituitary. so i make an appointment for a neurologist. he says i have time to make all these appointments for a surgeon and all these tests. well, i get a call THAT NIGHT that i have to see the surgeon the next day bc its too close to my optic nerve. (had those coasters been working... id have gone blind) so i meet with the surgeon and he says theres a blood test and maybe i dont need to have surgery... nope. not me. I NEED EMERGENCY SURGERY. he was going to do a crainiotomy and shave my head... i just had my hair done. and i was bawling. great. lovely. made my day. AND? he tells me about cushings, that i have it and it makes sooooo much sense! the mood swings, the crazy periods i would or wouldn't get, the weight gain, the buffalo hump... *sigh* so, emergency surgery. i wake up fine, go back to sleep wake up... blind in my right eye. great. so i was put basically on sucide watch bc of how my life was going. but whatever. just another bump in the road. i liked that my surgeon wanted someone to stay with me every day :) my sister and i got really close and the nurses at sacred heart... phenomenal. anyway, we didnt know much about cushings, but i lost 35 lbs in the hospital ;) i was bringin sexy back! i went home, had visiting nurses bc i could barely move (but my foot healed) and they were nice. i started physical therapy... but no one knew how i was really feeling. i woke up some days thinking i couldnt see bc i opened my blind eye. i wouldnt know where i was. what things were, how things worked. i wasnt sleeping. i was itching. i was hot. i was cold. i was sad. i was angry. my friends had abandoned me i felt so alone... wtf was going on!? and then... id swell randomly. the weight came back. i wouldnt be able to lift my legs because they would be so big and sore. i had pain in my head all the time. the drugs didnt always work. i had the dilauded itch. my mom had to bathe me. i couldnt do much on my own. but i persisted. i worked my ass off at physical therapy. the people at my job were mad that i was getting my nails done, or going to see a movie or going to the beach. for every good day i had... i had 3 bad days. my REAL friends were trying to help me feel normal. i didnt have money, but people were helping me. and i hate asking for help, but i did. life was pretty sucktastic, but i found alot of blessings. i went to the beach for my birthday. my mom and i met danny gokey (american idol) my friend set me up to meet hanson... my obsession and they even had a concert in my town! i figured out who mattered and who didnt, what mattered and what didnt. i went back to work in january, figuring i was ok, especially because my surgeon said he got all the tumor. my endo was an ass. he didnt know anything about cushings, wouldnt listen when i said i was allergic to the generic form of sinthroid, funny tho... because as soon as i went to the name brand, my rash left! hmph. anyway, my surgeon wanted gamma knife. but my neuroopthamologist said NO. so we went to thomas jefferson for a second opinion. guess who still has MOST of her tumor! 1st surgeon left most of it in, and it was growing. not like the stress of my job was helping... god forbid i have a support system. anyway, so we still have a tumor. and were getting sicker and if we dont kick this thing, im dead by 30. (im 27). ok, so lets do this! april 12 i went for a transphenoidal to get rid of the rest of it... but noooooo. he got most of it, but its attached to my carotid and in my cavernus sinus which means if he pulls it wrong... i lose all facial movement. so now were hoping that it falls away and in july/august well do gamma knife to kill it and get rid of it so i can finally start to heal. i swear... its like one thing after another. i didnt heal right from that either. these dizzy spells... forgetting things, my temper, the crying, the feeling of being a burden on everyone around me... it sucks. i hate it. i hate it. i hate it. but godforbid i complain. i do have a lot of blessings. i do. i have an amazing family. the friends i have are amazing, "team nicci" or "nicci's army". my boyfriend? forget it. he's the best. i dont think i could be getting through this right now without him, my family or my friends. do i wish things were different? that i could see? that i was already healed? sure. i was already supposed to be back at work! i love what i do, but i cant go back. i cant drive. some days i can barely move. some days i fall into the wall. i have a few good hours and then i collapse, but some people only want to see the good. they dont want to see that im struggling every day to smile and get through the pain. no one knows what its like. well i mean, some people do. but im tired of being judged because im smiling and laughing. its not always real people. i fake it. its hard, but i do it. i cant wait until im finally better. i look at pictures... this isnt me. the smile and the light in my eyes, thats me. this body? these emotions? not me. im a strong, independent, positive individual who had a shitstorm thrown at her. but this is me. surviving. i dont know any other way than to push through this. and that's what ill continue to do.