The Words Beneath My Fingertips

Some excepts of my last blog entry: Before my surgery, I told my surgeon (if you recall from that entry) that I had pain on my right side, too,and he pretty much told me that he wouldn't do anything about it...I was told that this pain was referred pain from the left side tumor and it would go away after surgery.   IT HAS NOT. In fact the pain on my right side is worse than it has ever been before ...If I press deep down on my skin, the muscle around my  bone is VERY sensitive and it hurts to press down on it. It hurts from the top right side of my pelvic bone, across and down my groin area (sorry if that's TMI) and sometimes down my right thigh (on the front side) and SOMETIMES it extends to my right lowr back area. But it usually stays focused on that pelvic bone area!  Since i wrote that entry, I saw a new pain doctor, and as soon as I pointed to the area of pain (I happened to have been in pain when I met her- usually my pain spells are over by the time I actu

Before my surgery, I told my surgeon (if you recall from that entry) that I had pain on my right side, too,and he pretty much told me that he wouldn't do anything about it. (I then thought in a later post that the PET did in fact pick up a tumor on my right side, a tumor I didn' t know about and thought that was the reason for my right side pain, but i didn't read the PET report correctly and what was picked up was Rosie, an outer fibroma [which is pretty big] NOT an inner tumor) Anyway, I was also told that this pain was referred pain from the left side tumor and it would go away after surgery. IT HAS NOT. In fact the pain on my right side is worse than it has ever been before. Going on ONE WEEK STRAIGHT of pain. I am SO glad I have leftover oxycodone from my surgery recovery (i didn't really use it for recovery- so I have a whole prescription- well not anymore since I've been using it all week ahha). It MOSTLY works- much better than any OTC would help me. T

I am really bad at updating, I know, but just a follow up from the last blog: Chest CT clear. Not clear in the sense that there's nothing there. The nodules are still there, they just didn't grow. Thank goodness! Now I can go back to my regularly scheduled all nighter for school. In about 9.15 hours I will be meeting my law classmates to discuss our case study. This has been a ritual for our papers. This is due Thursday. I have another paper due Monday. Busy weekend ahead indeed.

Life has been so good without that damn tumor in my lower left abdomen! My quality of life has definitely improved by 1000000%. Of course I still have residual sensory nerve damage. But it's bearable. And it's getting better. Well, it's better when i take my 2400 mg of gabapentin a day- I definitely feel a difference when i don't take the medication! :X Anyway, if you remember my past blogs, all you saw was F this and F that. I have found that since I am no longer in excruciating pain anymore, I have no need to use those words, so being pain free really does make a difference, haha! I can't say I am TOTALLY pain free though. Pain still permeates my lower pelvic area. It's the same pain. And when I have the pain, it's terrible (though not as terrible as the other tumor was), and when the pain is NOT there, I think to myself ,"what am I worried about?" I hate how much of a difference the pain makes in my way of thinking, I mean, when it's happe

You know, having NF is really isolating. Other than my mom and brother, I have nobody to really share this with. Of course, you guys (my friends) are amazing at supporting me, helping me feel better when i am in pain, but I'd really like to talk to more people who have this disorder. I have joined many FB groups, and I am hoping when I am not so busy with classes that I can meet up with some people. I recently joined a blog that a high school pal introduced me to. Her friend has NF2 and is working on a literary magazine promoting the cure for NF. She does tons of races (she's pretty amazing) for NF fundraising. My best friend ran in honor of me in the NF Cupid Undie Run  - I wish I could do it! Maybe I'll start running. Who knows. Anyway, I want to know what makes YOU feel isolated?

So it has been a month since I last posted. Last month I was beyond miserable. Everything hurt. I couldn't really eat. I always wanted to vomit. I had to walk with a cane. I'm so much better now! The only residual affect of my surgery is "sensory nerve pain" as my DB (douchebag) surgeon called it. When i saw him Sept 8. he hardly looked at me and did not even look at my incision area.The appointment was less than 10 minutes. The only good thing out of that appointment was him agreeing to write a letter on my behalf to disability services in case I need more time on my assignments during this recovery period. I didn't know how long the muscle pain and nausea, etc would last. THANKFULLY I haven't needed it, but I was glad to have a plan in case I DID feel terrible. I can ask for an extension through the end of October, but i won't be using it. In fact, when we had to sign up for presentations for my field experience class, I signed up for the first day

I haven't really written about my recovery period thus far because well, it has sucked and I haven't been in the mood until, well, right now. I started writing this before midnight, and have been distracted here and there,  so when I say today/yesterday...the day will be slightly off, just FYI. Two operations in two years is enough for a lifetime. I'll be so so so happy if I will never have to be in the hospital ever again. Ever ever. My surgery went well. From what I understand, the tumor was quite easy to see and take out. I don't know how much tissue they took out around it. I also know that the nerve the tumor was sitting on has DIED but I don't know what that means for me. I was not in the hospital for long, thank GOD. It was miserable. First of all, they shove medicines down you all at once, not taking into consideration ANYBODY'S medication schedule. I still can see the little cup full of all my medications at one time and want to cry. My r

So i first want to say that I was wrong about one of my most scathing parts of my last blog entry. When John was going over with me the parts of the PET that my surgeon didn't go over with me (because I won't read it- I know how to read it- but I won't read it- there's way too much to be overwhelmed with) I thought it described  my hip tumor as being sub-cutaneous , when in fact he had said CUTANEOUS, which makes an absolute huge difference. The PET showed Rosie, the nice bump on my hip. I have a picture on my NF picture tab. Sub-cutaneous would have been under my skin. So, there is still no real reason why sometimes I double over when I am in pain on my right side. So I guess I am glad I convinced myself of referred pain, since it still basically IS referred pain, and my surgeon is still a dick face. Anyway, I'm still bothered at the wall my surgeon pushes between us. I was explaining to my primary care doctor today (who I absolutely adore) that I feel like he is

I don't even now where to begin, because I'm so so so pissed! And for those who followed my crazy status updates, blowing up your news feeds- please read - this is why I went from silly to pissed so quickly. I'll just begin with talking about my pain and stuff since well I've been in pain forever. My surgeon is sort of a DICKFACE. Imagine the biggest douche-bag boy science geek you can ever remember from your high school memories and imagine him with a sour face- like somebody who has sucked about 15 lemons.  He's just so short with me, and so 'yeah yeah yeah whatever whatever- i just get a really bad vibe from him and while I am confident he is going to do a good job i can't believe HE is going to be MY surgeon and to make it even better he runs on vacation as soon as he talks to john after my operation- WHICH HAS TO BE A DAY LATER- not his fault, but BLAH. My last surgeon was pretty awesome. This guy bites. Our first meeting  a few weeks ago when i

I will be going under the knife and possibly be nuked on August 22. Once I know the deets I might do another youtube video like i did here in August 2009: (and fYI- I had procedure 2 and yes, acid reflux has taken over my life but the surgeon luckily did not touch my vagal nerve oh and people were way too generous to me in keeping me un-bored) I have a very good idea about how I will illustrate the radiation.... Oh my gosh planning the video is quite exciting. Yep. Ok. That's all I feel like writing. Aug 15 I learn the deets so I might write more then. For now I'm on vacay so if I write more it shouldn't be medical related. But maybe it will be. Mysteries!

So a lot lot lot lot lot lottt has been happening and I thought I'd tell you what that is!  Just to recap since I know you can't possibly remember what I write in this blog and post to Facebook-- I know mentioned in mid July I was finally going to see my neurologist/NF specialist about a tumor that was found in my lower left abdomen that was deemed to be an NF tumor...(even though the tumor was found in September and I was not told until the end of January by the MRI techs/beginning of Feb by my GI who gave me the results- I thought my January MrI was of my liver [I have a FNH on my liver and I thought I had to keep getting MRIs of it to get it checked out]) and if you don't remember I posted that, well, that's what happened! :) Anyway, despite that freaking DRAMA it took me months to get a hold of my NF specialist a few weeks ago (I only see him in DECEMBER so it would have been nice to know in September....) and he took one look at the MRI picture and he said it w

*Note* title used to be Oxycotin Dreams- I was given Oxycodone, not Oxycotin... * As I've statused about, my NF has given me nerve tumors, one of which is in my lower left retroperitoneum, and I supposedly have other growths on my right side (though I have a major breakthrough story about this which I will write about later, so stay tuned), the pain of these tumors are really really really unbelievably painful, and I've been prescribed nerve pain meds more suitable for seizures, but they are supposed to keep all kinds of nerve pains at bay. I was first given Gabapentin, but that ballooned me within a month- 5 pounds in like 35 days- crazy- and it didn't help my pain much. So I was given Topamax (lots and lots and lots happened in between, which is something I will talk about later), and the Tmax is supposed to combat the weight gain and keep me capped at whatever I've gained- who knows. We'll see. Anyway, the pain that i've dealt with in the last quarter o

pain. Well, actually it's been the word of the past like 14 days. Or more. And I'm tired of being it. And I hate it. And it doesn't seem to want to go away. And it has fucked with my well-being. And my attitude. And my psyche. Shabu Shabu won't even make me feel better. Not even Chick Fil A. I've been in a pretty bad mood most of today. Poor John. I told him. "I'm sorry I'm being such a stupid wench" and he said, "No, you're being a reaonably intelligent wench." Yes, I have a good husband. Except he has promised to let me introduce him to froyo, and he keeps breaking it! OMG Red Velvet FoYo could quite possibly help me feel better.  Went to the physical therapist today. I'm of course very weak in my left leg. Right leg isn't much better, but oh well. I have some exercises to do. I have to do lab work tomorrow and then I see my PCP next Friday. That' s all I feel like writing about.

Something happened tonight and I want to know if you think I did the right thing/if you would do the same thing. Situation: The hubs and I leave a party with friends and we get to Stonybrook station to go home. Drunk girl comes in as we do. She's really really really really drunk. Getting more delirious by the moment. She asks us "How do I get to Park Street?" I point to the map and tell her and I tell her to make sure she goes to the INBOUND side. Of course she can barely understand me. Then she shows me how she practically broke her hand punching a girl in the face at a bar but she was "defending" herself she insists (she bumped into a person acidentally, the person got all in her face, and then she punched this person) She walks far down the platform (the hubs and I watch her closely because there have been several drunk people that have fallen into the train pit) and ends up on a bench where some other guy is waiting for the train. They are stran

So I finally met my pain management team today. The "team" consists of a pain psychologist and a pain physiologist. The appointment was set up a few months ago and it was great to finally see them today. Pain psychologist is really nice but WAY too touchy feely for me- don't know how to explain it but maybe it's just jarring to have a doctor other than my primary care doctor to actually react to the pain I've been describing. I've felt like I've been psychotic all these years. i'm finally vindicated. Well, I felt vindicated when I wrote my first entries of this blog. But YEAH. Anyway I need pain management because the pain comes and goes at random times and stays for ranodm amounts of time and the pain is intense... I mean really intense.I've been in a 'spat' for the last few days, so I'm happy I actually saw the pain doctor when I felt the pain- I usually see my doctors before the pain starts or after a bad spat. Never during. so hu

I don't know if it affects anything or not but I changed my username/url. doing my best to really gear this toward NF so hoooopefully people with NF can find this. And as an update to my previous blog, I was in pretty bad pain most of the day, and it got worse once i got home. Even though tylenol did nothing for me all day long, it's finally working now and my life is back.  FOR NOW. so if it's not nerve pain, it's this pain. thus is my life.

Holy shit. The only one way to describe what I went through last night is DISTRESS. So, I know you know I have nerve tumors, blah blah blah. I keep so much inside of me that I really don't know what I post, what I don't. I know I talk a LOT about my pain in this blog. Such is my life! I don't know if I've written this or not, but anyway, the thing with nerve pain is that when I am in this pain, I can't imagine what it's like NOT being in pain. But when I'm not in pain, I can't imagine the pain. It's THAT bad. Anyway, cramps are a different story. Sometimes it's not that terrible. Usually it's pretty bad the first 2 days, and it gets better. Usually I just take a couple of tylenol, have a heating pad and that takes care of it. Sometimes I wake up in a lot of pain and I either writhe and cry for about an hour or so, and go to sleep or I'll do what I just mentioned after taking tylenol, sometimes turning on my heating pad

I want to do more reading. I haven't read for fun in years. Thus begins my reading challenge. I posted this on my Facebook page, but I'll post here too. On one of my statuses, I asked my FB friends for their"must read" opinion. WELL, just because I have listed only these books here it doesn't mean I won't go to the library and get what they suggested... Anyway I plan to read as many of these books as possible, not in the order listed here, but I'll read a fiction, and then a non fiction and then a history (while studying for comps and some Chinese in between or at the same time... maybe...yeah) Books: Fiction: 1- Troilus and Criseyde and Selected Short Poems- Geoffrey Chaucer (my <3 and soul) 2- The Phantom of the Opera= Gaston Leroux 3- Kinshu: Autumn Brocade- Teru Miyamoto 4- Snow Flower and the Secret FAn- Lisa See (I might have read it but don't remember) 5- Death and the Penguin- Andrey Kurkov 6- Evolution, Me and other Freaks o

I guess it was the end of April since I last posted. Something like that. Well since then I've finished classes for the semester, and while I should be stress free, I am even more stressed. FML. I believe I mentioned in my last entry that I saw my PCP and she wanted me to have an endoscopy/colonoscopy soon but I didn't go into details why: because  at least for the endoscopy order, I still have troubles swallowing and my heartburn is bad (I also just need to have my yearly cancer check), but as for the colonoscopy order, she thought perhaps I grew colon polyps, which is why I am so anemic. She wanted me to get it done ASAP, but with final papers/exams, plus the hub leaving for most of June PLUS my surgeon not being free til July, I booked my appointment in July. Well on Monday I had a fellow up with my PCP and she wasn't really happy with me waiting til July. She worked some magic and I had my procedure done today-- with my gastroenterologist- I'm still mad at him f

I haven't seen my PCP since...I don't even know when. It was a long time ago. So we had about 100 million things to catch up on for my physical today. I had to get bloodwork done prior to this appointment, and the results were pathetic- but it's all my fault. See I was really really really good abotu taking my vitamins every day (minus a small moratorium after my friend died) until December, when our flight was canceled and we couldn't get home for 4 days. Since then, I was good about taking my Prilosec, but the others...yeah. I was lazy. Well now I'm anemic (despite the fact I DO eat things rich in iron, but OK) and all my vitamin levels are deficient again, so not only do I gotta restart, but I have to up my dosage to double. AND with my anemia, just my little Flintstones vitamins + iron (which WAS doing the trick) apparently won't anymore, soooooo I have to take this god forsaken elixir. It's just a teaspoon, but because it has "teeth staining ag

I am so damn tired of being in pain. I swear it gets worse all the time. Now it's everywhere in my lower abdominal area. It lasts for days on my left front/left back area (the tumor's on the back, but since it's on the nerve, it radiates to the front) and then I go in 'remission' for a day, then it's full blast on my right side, and sometimes it radiates from my right side (thought it's more my right lower front if that makes sense, near the pelvis) AND in my left back area. AND THEN MY HEARTBURN GOES BAD. Prilosec is supposed to reduce stomach acids- so TWO a day should help, but noooo. For pain, I could take 2 650 mg Tylenol and sometimes it HELPS but the pain is still there. It usually takes about 20 minutes for it to HELP so I can...well...go on with my life and then BOOM it come back 45 minutes later, and I can't take another dose for 4 hours. On Wednesday this happened in class and I almost passed out, and I actually took the pain pills one hour ea

So my husband and I (well, I did, and forced my husband onto this) made a New Year's Resolution to "do something we've never done before once a month". This is what we've done so far: January- buy a waffle press February- redecorate our bathroom (I admit, we did these two things the same day, only because the latter part of January consisted of me being SO DAMN SICK, but we would have bought the waffle press had I not been sick) March- went to Providence (for our anniversary) since we've never been there before April- we got certified to do CPR! For the CPR class, I was accosted by a student in one of the main lobbies of one of the main buildings where I work (oooh to be so....descriptive) to sign up, and it seemed great, so I signed up and dragged the Hubs into it as well. I am so glad I did. The tutorial movie we had to watch was SOMEWHAT lame, but it was SO great at showing us how to do everything step by step. Many people seemed to have fu

So as I said I was going to do in my video, I FINALLY got a copy of my MRI image CD (two actually) and brought one copy to my NF doctor. Now I just have to wait. (the other will go to my girly doc because I think she should know about this tumor too). I have so many doctors that I think I just need to explain who is who when it comes to who takes care of me. My NF doc/Neurologist - Dr P My neuro-ophthalmologist (he, along with Dr. P, monitors my optic tumors)- Dr. L Primary care physician- Dr Q Gastroenterologist - Dr. B Surgeon Dr. S Oncologist Dr. K Girly Doc- Dr. M Shrink- (yes I have a shrink now!) Dr. H I see/talk to my Gastroenterologist more than anybody else, so while he is the one that orders most of my tests (since they have all been abdomen related), he is not connected to or in communication with my NF doctor. Why? Someone told me at one of the hospitals I frequent that since 9/11, information from doc to doc is now the patient's responsibility. This is w