So, day before yesterday I'm going into the Safeway by my house and I go in and there's this guy in a wheelchair all messed up on drugs and a lady with him.  When he saw me passing by, he's like, real loud WHAT'S UP WITH YOUR ARM???   IS THAT A SHARK BITE!?!?!  He kept on and on, yelling shark bite, and saying stupid dumb stuff like that.. I finally got what I needed and of course had to walk by him again..

I checked out at the store and left.  I then had walked to another store real quick and started to walk by the bus stops.  All of a sudden I hear him screaming SHARK BITE!!!!  SHARK BITE!!!!!  YOU BETTER TAKE CARE OF THAT SHARK BITE!!  ANd I said you better SHUT UPPPP!!!   I didn't hear anymore after that.  I mean really?  Why?  This kinda stuff happens to me.  He yelled BOTH times in front of so many people.  It was really embarassing.  Then people are all lookin at my arm.  Ugh, leave me alone.  Isn't this disease bad enough?

Ugh, again, my skin is breaking out in an allergic reaction from the Cyloriprep that the nurses use to clean your skin around your line or port.   Last time I had one it took a while to do this, but this time it's doing it right away!  It like, rips and burns my skin off... leaving it burning and itchy, and scabby lol.  I hate it.  Then the IV nurses always come in and use something different that doesn't really work... uhhh I wish they just wrote down what the first person did, cause that was the right way that felt better, and no one is listening to me..lol.  Anyone know what's better to have a line or a port?  My Dr. said the line in my arm would be better, and the port would have been more noticeable but I'm not so sure...

All I know is, it really sucks having this "thing" back in my arm.  It really bothers me, and I'm self concious about it.  I think I wierd people out with it, I really do.  Especailly people out here.  Even my roomate looked at me funny when I told her I was getting it back.  It's like you had one before, maybe for like a week, but shit, give me a break.  Hope no one minds me cussing every now and again, I just really need some support and I'm just fed up!  I give others so much support and such over small things, and no one can ever give me some support.

I don't know if I will ever find anyone.  I'm 31 years old, and by myself, and right now I choose to be, but like my ex used to say, "You'll never find someone that will be with you because you're sick."  I didn't think this was entirely true, but maybe it is.  How is someone going to want to date me with this "thing" in my arm.  Even my roommate said last time that it's good it's out so you can start dating :(  Why can't someone just love me for the way that I am?  I don't know, people are different out here.  It's even hard to make friends.  But, it's even hard for my family to understand.  I don't have much support there, except for my grandmother, Nanny <3 I mean, if they can't understand, how will someone else?  My mom doesn't even call me like ever.  Yes, recently we had a falling out, but things have been horrible for quite a while.  I'm sorry, but what kind of mother, doesn't even call her daughter after a concussion & all this for that matter, and never calls anyways.  Didn't see her or talk to her for years, whatever, guess I just need to execpt that this is always the way things will be.  But, it's just so hard to do that.  I've always wanted a relationship with her, and always tried so hard, but I don't have the strength anymore, or the emotions.  It's too much for me to handle, even just writing this brings tears to my eyes.  I don't know what it's like to have a supportive family.  I know a lot of you do out there, hold them tight.  I am on the west coast, and my family and friends are on the east.   I don't really have anyone out here.  I take care of myself, worry about myself, and do all this by myself, and it's hard...

First of all, I absolutely hate riding the bus because I already, excuse me, but feel sick as hell, and now I have a picc line to worry about and it's summertime with no AC on buses or at home for that matter.   Anyways, I'm coming back from the food bank (kinda embarassing, but i'm going to put everything out there now so people can know)(and the food bank is another issue I'll talk about later) I have a bunch of stuff in this cart.  The bus pulls up, and I looked at the guy and knew it would be a problem to get him to lift down the ramp so I could get this thing and myself on easier.  I get on struggling the whole time, and get on and there were no seats.  I kindly asked the man if he could help me get a seat and I started telling him why, I guess he didn't believe that I'm really sick, and also have Meneres Disease (still don't know if i spelt that right) and so i'm dizzy all the time.  Anyways, he says "Open your mouth and tell someone to move" in shock I started asking people almost in tears telling them I have tubes sticking out of my arms. Everyone was staring at me with blank stares, and finally an older man let me sit down.  I thanked him, but was still furious.  A girl had walked up to the bus driver to ask a question and he was really nice to her, guess it was also a racial thing.  When I got off the bus, I stopped and asked him his name because I was going to complain about him.  He stared at me looking pissed and I said you were really rude to me, he said no I wasn't... I mean really?  Can you believe this guy?  Then, he "Kicks" me off the bus when I didn't even do anything wrong and it was my stop anyway!  I guess he was trying to look like a tough guy.  I never emailed about him, but I really should have.  It was so humiliating, and I also had just had a concussion, but I guess they wouldn't have believed that either.

So, last week, I got my picc line put back in, Wednesday it was.  Everything went fine, and I even felt better than last time (or so I thought) My heart wasn't beating funny like last time, that was freaking me out.  Anyways, I went on home, then decided to go to the store real quick.  It's not very far, and I've had one of these before.  Well, it was a hot day & after the procedure & bus rides, I should have stayed home.  I went into my room and sat on the bed and started texting a friend.  I started feeling very strange is all I can really say, then my arms & hands were going numb, I stood up, walked over to my door, opened it up and called for my roomate Courtney... I said "I'm not feeling very good" she says "ook" then next thing I know I'm on the floor & shes on the phone with 911.  I had actually fainted, and hit my head hard on the hardwood floor, and I had a big clip in my hair so that hurt it too...  I had no idea what had happened, and kept asking over & over again what happened  my roomate kept telling me & I wouldn't even know.  I got knocked unconcious for a sec or 2, and then the paramedics were here.  I started shaking & convulsing, and kept asking if I'd be ok.  All I remember is a guy was holding onto my hand and I held it so tight.  And it felt so good, I really appricated him doing that.  In the ambulance it was a real blur, but I don't live far from a Hospital.  Then we got in the ER & I don't know why, but I told the medics they were making me laugh.  I think they were cracking jokes. 

I got to my room, don't even remember the Dr. coming in, but I remember someone feeling the back of my head saying there was something there, but didn't think I needed a cat scan, I wasn't cohearent then, but excuse me, but wtf?  Shouldn't they have done that as a precaution?  Just in case?  I mean I was knocked unconcious!   Also wasn't happy about it because I was there on Sunday, and the Dr. then basically called me a liar!  Grrr!

The nurse came in with some Adivan to help me calm down, of course I was shaken up but my head n neck hurt so bad, they didn't offer anything for that and said the anxiety meds would help it... whatever, I had pain meds at home.  Then they didn't give me an ice pack, & I wasn't cohearent at all when I left the hospital.  I had to walk pretty far to a bus stop & I guess I waited at least 15 minutes from what my grandmother (nanny) tells me.  I don't remember it took this long lol.  I finally got on the bus & made it home safely and fell asleep right away.

Also, right before I left the hospital, they told me I was very low in Potassium and gave me a shot of it and it was gross and an orangy color from what i can remember.  I don't remember them taking blood, maybe they did, or I guess that they did lol.

Now, it's been almost a week since my concussion and still this morning I woke up at 6:30 a.m. because my head was hurting.  Maybe from sleeping on the bump.  The first few days of the concussion were the worst.  I felt so dizzy, me head and neck hurt so bad, and it was scary.

I saw a Dr. yesterday after my fluids and he told me it can take up to 2 weeks for me to feel completely normal again.

# 7

So, I don't even know where to begin.  It's been a while...

I guess I'll start by saying, that I did get my picc line out about a month ago.  I was getting 3 days of IV fluids and 2 bags at a time; I started getting really dizzy because of my Menere's Disease & the amount of sodium that's in each bag.  (Apparently I should only have 1500mg of Sodium a day) So, the nurses ended up taking it out...

Since then, I've dropped a little weight (I'm down to 109) & when I got the line removed I was at 116.  The nurses told me I hadn't gained enough wieght, but they took it out, and I was really anxious for that!  The past week, I've been very sick; not being able to keep things down, throwing up undigested food.. I finally decided to go to the E.R. which I didn't want to, but it was a week straight of this & I knew I was dehydrated.  I got to the hospital, they took me back real quick, the Dr came in & I told him everything.   My Gastroenterologist (who specializes in Motility Disorders) has put special instructions in my file for when I go to the hospital.. Basically because no one knows what to do with me.  I simply let the Dr. know this & he acted like Mr. Know it all & said I know what to do... Anyways, he did the norm (well for the most part) .. fluids, bloodwork, nausea, and something for my pain.  I started feeling better, and they were talking about admitting me.  When the Dr. came back he sat down in a chair & said if you were having all these issues it would be showing up in your blood... and "you're not dehydrated" I got so upset!!  I said then why was I on fluids for over 6 months!!!?  He said maybe you were dehydrated back then.  OMG!!!  I told him to take the damn needle outta my arm n let me go home since I obviously didn't need anything.  He told me to please stay and finish the rest of my 2nd bag.........................

At the end of the whole thing he apologized and said that he didn't mean for it to sound like that, well it was already too late.  (it's hard for me because my family doesn't give me support or believe me either, execpt for like 2 people) So, it's very frustrating!  All of a sudden, I remembered this Dr. from before when I went... UGH!!!

I called my Dr.  Dr. Patterson, and got upset at the office because they weren't returing my phone calls, and it takes months to see my Dr.  Well, to make that long story short, he sqeezed me in his schedule the next day.. (today!)

I went in, and just as I thought had lost 4 pounds in 2 days.  Everyone always says, I need that kind of diet.  I mean, my ex even said that to me tonight on the phone... I said really dude, you know that's like the worst thing to say to me, he said yeah I know... Anyway, I was told by Dr. Patterson it was time to put my Picc Line back in, and that I might have to be on TPN.  I never ever thought I would get to this point...  I went and got some bloodwork done, I can't remember what it's called, but that's how they know if you need TPN or not.  Normal range is 20-40 and last time I was at 21 and weighed a little more so it could go either way.. He said that he would find out the results tomorrow, but the suspense is killing me.  Plus, I don't know how long it'll take them to call me.  So, basically, my appointment is at 1:30 tomorrow, and I won't know what I'm going to really be doing by then, or maybe I will who knows.  But, I do know one thing... it's really hard being 3,000 miles away from home, dealing with all this alone...

     So, today I had to walk most of the way to the hospital unfortunately because my car died on me the other night, I didn't think I was going to make it.  I had to stop about halfway and then keep on truckin, I couldn't miss the appointment.  I got to the first building got on a shuttle and went the rest of the way.

     I finally get there, and the nurse takes my blood pressure and she looked worried and said "your heart is racing, did you run here?'  I said "no, but I did walk far to get here and had to walk really fast thru the hospital because I was running so late."  I totally forgot to remind them to do that again before I left because it was a different nurse.

     I did also forget to add that I am working on getting an at home nurse.  So far I am able to get one with my insurance, I'm just waiting on my Doctor to call me back and tell me that's Ok.  I hope he will because when I went to see him last week he seemed like he really wanted me to stay in the area and go to his hospital.  If he doesn't let me do that, I'm going to have a far drive twice a week and I don't think I'm healthy enough to do all that.

     I continued my fluid bag today as I was drifting off to sleep, and the nurse came in to unhook me, and she said "Have you been feeling any better since we've started this?"  I said "No, I don't"  Well, she was telling me that most patients that are on this get 2 bags of fluids and that I should be doing that as well.  She actualy even said I could call me Dr. so I could get it today, but I just told her I'd call him and get it set up for next week.  And I was on my way to go back home...

     It feels kinda weird to have this thing in your arm.  It also kinda depresses me.  I'm glad it's the winter and I don't have to go around wearing a tank top or something where everyone can see this.  Hopefully it will be gone way before Spring and Summer, although, I did talk to a women that had it in for 18 months, that's a year and a half, no thank you..

     Can't sleep again tonight, guess it's because I slept for about 15 hours last night, but I needed it.  Well, I've had my line (TPN Picc Line) in for 5 days now, and I'm starting to get used to it.  It's really hard to take showers, I have to wrap my arm and tape it before I take showers.

     I went to go get my line cleaned yesterday, and when I got there I started feeling really dizzy, the nurse had to grab my arm so I wouldn't fall.  I think the elevator ride up had made me dizzy.  I also hadn't taken my pill that helps with my dizziness (another health problem I have), and I guess I really needed it.

     The nurse started to feed me, then started to clean my line.. I started to then have a lot of nasuea.  Nothing to do with the feedings though; just my normal Gastroparesis.  She took the "lock" out of my arm, and all of a sudden, it rushed over me; I was really about to be sick.  I kept saying to the nurse, "i'm going to be sick" "i'm going to be sick", well I guess it was the worst time ever to be sick, because the lock was out of my arm.  I have no idea what my arm actually looks like with the lock out of it, but i'm sure it's pretty nasty!  LOL.  Anyways, She tells me "I have to get the lock back in your arm" (I don't know what would've happened if she didn't) And it seemed like it took forever!   I guess a few minutes later I said "I'm really about to be sick" and she leaned me back in the chair and grabbed me something to get sick in.  I started dry heaving, over, and over, and over again, then I started getting sick. 

     Finally, I was done, and it was time to just continue my feeding.  I actually started to drift off to sleep and before I knew it, my machine was beeping to let everyone know it was done!  One of my nurses who I've seen every time I go comes in and says "I heard you got sick" and I just kept telling everyone "I always get sick, it's normal for me"  It's so embarassing.  Like, when I was getting sick they were sitting there watching me.  Guess it's kinda normal cause I'm in a hospital, but I'm really private when it comes to stuff like that.

     At first the nurses told me I had to come to the hospital every day, except the weekends, to get my line cleaned and all that good stuff, but on Monday they left me confused, so I showed up today and they told me I only have to come twice a week now!   Yay!!!  That's great... Still don't know how long I will have this thing in, but at least I only have to go to the hospital twice a week now!  The nurse did tell me yesterday though that when Dr's put in a TPN line, they expect you to have it for quite some time, so we'll see what happens ;) Until next time ...

It's always best to rest ...

     I can't sleep again, but that's kinda normal for me for right now.  Well, I guess last time I wrote I was going to the ER, well I went, and everything was Ok, but i'm glad i went to make sure.  No one told me that it's kinda normal to get those heart paulpitations.  When I went to the hospital, I waited for a few minutes and they rushed me right back.  I started getting so much anxiety because I didn't understand what was going on, but I knew it didn't feel normal.  They gave me a EKG, and that came back fine, then the Dr. showed me my chest X-Ray and he said that was fine too.  And I said well the other Dr. said maybe you should adjust it, well he didn't want to touch it, so we left it alone.  My throat and face were going numb at this point.. I guess from so much anxiety from not knowing what's going on with me...

     Luckily, I started making postings about it on Facebook, and found out a few people have had this done before and they said your heart can race a lil bit.   *sigh* of relief, it's always great to hear from people that have experienced the same things so that calmed me down a lil.

     I'm actually getting kinda tired now, so i'll write more tomorrow =)

     I'm so exhausted.  Well, woke up today, with not enough sleep and rushed to the hospital for the placement of my line.  It went pretty well, I'll post pics soon.  I walked in and my room was beautiful and had such a nice view of the city.  The nurse walked in and we got started, expect I guess I didn't know how extensive of a procedure this was.  Well, they call it surgery, and i didn't know why until now. 

     I didn't look the whole time, the nurse kept running a sonogram over my upper arm, then i did look to my right at some point and saw a long tube she had pulled out of me, yes for real, and i'm like OK i'm not looking again ... lol.  Anyways, she actually stuck a needle in which she said that was the worst part and it pretty much was.  But, i was still wondering why they had to numb it.  Next thing I knew we were done & I was left to lay and watch T.V. for a while.

     A bit later the nurse came in and said it was time for my chest X-Ray, and i'm wondering why are they taking a chest X-Ray for pretty much an IV in my arm?  Still didn't know how serious this was ..

     I started to drift off to sleep, and they came back about an hour later to tell me that my chest X-Ray came back ok, and the TPN Picc was in place, I was YAY =)  It was then time to start my IV fluids and my Vitamins that i am always lacking.  She starting to give me the fluids and i started noticing my heart beating funny, especially if i laid on one of my sides.  I told my nurses and they sort of looked at me like I was CrAzY !!  So I thought maybe I had anxiety or something, but it just didn't feel right and my heart didn't start doing that till they put that in!  So, the nurses tell me to get dressed and walk around, pop a Xanax and try to be calm, even tho i really was, I was so happy and confortable the whole time I was there.  Thought I was doing ok after about 10 min so I left.

    I decided to go shopping a little cause my Dad gave me some Christmas money, and I really needed some new clothes because nothing fits anymore, especailly pants, I gotta hold them up alll the time, lol.  Anyways, I start noticing the heart palpitations again, especaillly went i was bending down a little, but it would also just come on all  of a sudden, even when I was driving.  My Nanny (my Grandmother) then told me, "You've done to much, you shouldn't have gone out and you should go home" Bless her heart I love her so much and she's right!  I shouldn't have, but been under stress, then all the health problems, I really wanted to go shopping a little and just feel normal, but I can never just do anything without this getting in the way of something.  I couldn't keep doing what I was doing because of my palpitations...  So, I listened to Nanny, and high tailed it outta there ;)

     On, the way home I keep telling Nanny about what's going on and we both didn't really think it came from the Picc line, but who knows?  When I returned home I called the on~call Doctor at my Dr's office and he got on the phone right away and he was telling me it can kinda get hooked onto a part of the heart, then he said you CAN go to the Emergency Room, but he said you could also wait till tomorrow and maybe they can adjust it.  Then he said it definitely something that you don't want to just let go, but it's not that big of a deal.  Well, what's that supossed to mean?  lol

     So, needless to say, Nanny and I talked about it and decided it would be best to go to the Hospital