my story so far, scary but happy.

I'm home

2010-12-28T22:59:55Z

They let me come home today. I'm so happy to be here. They told me yesterday morning that they weren't sure about the toxoplasmosis. They don't think its cancer but they still don't know. My neurological symptoms are back. I have to get a blood test to see if it is the toxoplasmosis or cat scratch fever. If not we're back to clueless... Back to testing. I can handle that. Its ok really. It sucked at first to have the symptoms back because I didn't think I'd have them. Now I'm ok with it. The clinic is on holiday vacation so I can't get any answers until january. They prepare your wound for the outside invironment. They prepare you for all the procedures and pain. They don't tell you about the fear though. I'm 22. I almost died from a simple surgery. I almost died because of a bacteria that shouldn't have been where it was. There is no good answer for why. I am so grateful to be alive and I'm not angry. They did the best they could with what they had and accidents happen. I understand. I'm happy and ready to live my life. I'm terrified though. I'm 22 and I could end up in a body bag tomorrow. Its that way for everyone. I know that I'm no more/less likely to bite it than anyone else. Most people just don't have to face it already. I'll be over it before long. Its just temporarily suffocating. Everything is fine, better... Everything is perfect. Well, except that I'm still sick and I have a hole in my chest with a medical vacuum attached to it. Even that's not so bad. I have chocolate and I'll be back on the human hamster wheel tomorrow... Starting at a walk.

I almost died part II

2010-12-26T10:37:15Z

I'm doing much better. I'm down to 2 tubes now. An IV, to keep my central line from clotting as only 1 of the 2 tubes are working, and my wound vac. I've learned a little more about my first day here. There's a rumor that I coded after surgery but I haven't seen my chart yet. I know I lost consciousness in the ER because my blood pressure dropped so they had to wait 3 hrs before they could get my bp high enough for surgery. They had to cut out a lot of chest muscle and nerve. Part of my chest is numb because of the nerve loss. It should close well though and I'm so glad to be alive. My boyfriend was wonderful. He helped the nurses with sponge baths, slept on the floor in the icu, and helps me in any way he can. If he's not working he's taking care of the dogs or he's here. My runner mentality is helping me a lot. Now walking is a bit of a challenge. The infection made me lose a lot of muscle in the fight. I walk laps around the halls every hour now to try to gain my muscle back. I did hear some amazing news the other day though. They found the name for my mystery illness and it isn't cancer. It was toxoplasmosis. Apparently a lot of athletes get it and my apartment complex had a really bad stray cat problem. Its a parasite that comes mostly from stray cats. I must have picked it up when I got a really bad stomach flu as your immune system has to be compromised in order to get it. It attacks the nerves in your brain causing all of my neurological symptoms. The antibiotics that fight the infection also kills the parasite. One of my nurses jokes that my body doesn't follow the rules. I contracted a semi rare parasite and a very rare form of infection all within 3 months. The affects from the toxoplasmosis should dissipate in a month to a year and if I get physical therapy I should regain most of my range of motion in my shoulder. I'll have to get blood tests to make sure the antibiotic is working and a heart check up every so often because my incredibly healthy heart just experienced the beginning stages of heart failure a week ago. I should be back to normal in no time. Might be a bit before I do my half marathon but it'll happen. All in all this was a pretty awesome christmas. It was spent in my hospital room, just me and my boyfriend, over hospital food and take out from a little cafe that was open. I wouldn't have had it any other way. My boyfriend has never had a good christmas but I promised him a good one and he said it was his favorite so far but made me promise next year it wouldn't involve a hospital. I think it sounds like a deal lol. I should be getting released on monday and I should be back to work in 2 weeks. I've learned so much from all of this and you are all amazing people. Instead of getting my crap jobs back and working 90 hrs a week with no benefits I'm working on getting a hospital job when I get the all clear. Then I'll work that full time making good pay + benefits, doing the nanny thing when I feel like it, and living life with all my free time. I'm getting back in school as soon as it all settles down and I have So much work and SO much life ahead of me. I should have died. The infection starts shutting down organs within 24 hrs and I made it 35 hrs before they could do anything. Apparently my life has a very important purpose and I don't plan on taking it for granted. Its frustrating to be out of breath after a walk around the floor but every step I get to take is a miracle. I hope you all the best of luck and I plan to stick around for support. I don't have cancer but I know what it feels like to be told its probable and I know what almost dead feels like. Best of luck both here and beyond. If anything else happens with my current situation I'll let you know. Thank you for making me feel welcome when my world was crashing down. It helped me stay positive.

i almost died

2010-12-22T04:09:13Z

I had my simple lymph node removal and biopsy friday. Because my immune system sucks from this mystery illness/cancer I got a rare and aggressive bacterial infection. Within 24 hours I was in the ER with a rash all over my upper body that looked like a sunburn and a fever of 102. The opened the incision and found a decent amount of necrosis so they rushed me to the OR. The cut out all the dead tissue and packed it with gauze. In the OR my bp dropped below 75/35 and I became takychardic(sp?). I was in the ICU for the first 2 days and the first 24 hours they didn't know if I was going to make it. I'm in the regular hospital now and I'm better-ish. The nurses are going crazy because they can't keep me still but moving is healthier for my muscles and I can't lay her all day. Lol I'm leashed to the bed by tubes though so I can't move far. I was septic when I came in so my body was shutting down. I was dehydrated so my normally healthy veins kept blowing. They blew 4 IV sites in my right arm and eventually put in a central line. I'm still on O2 while I sleep but I refuse to stay down too long. I was put in isolation today because it killed my immune system and is only contageous to other patients with awful immune systems. I got a sponge vac in open chest wound. I'll be up bouncing around in no time. The nurses and docs love me. Got to sleep, meds just kicked in. Sorry if this was all groggy and didn't make sense.

think ink!

2010-12-02T04:15:44Z

First off, thank you guys SO much for the support! I wasn't sure if I should even be here since they haven't figured it out. Since my last post a lot has happened. to sum it all up I had a radiologist tell me that it wasn't lymphoma or leukemia and then my doc said it was still a possibility but maybe not as big. Then I was told that I have a tiny cystlike thing in my thyroid that they're going to biopsy soon as well as my. Swollen node. Then I had a consult with my surgeon for the lymph node and they did a detailed exam and he found what looks like skin cancer on my back. Everyone is trying to figure it out because I'm such a mystery. My doctor looked at me baffled yesterday and told me I was completely healthy except for the fact that I'm not. The surgeon said he thinks the lymph node is a strange reaction to a tattoo I got six months before and is just full of ink but the other surgeon didn't look so sure. Then he told me that his worst case scenario was melanoma and all he would say is that if so then its bad because its already in the lymph system. He said that was a 1 in 30 chance but if not then I'm back to square one with what is really wrong that's causing the seizures and stuff. My boyfriend started his new job which means I've had to go to my last two appts alone. I still make everyone laugh and I still get a kick out of being a med school science project but I feel so much smaller in that room without him. He is so upset that he can't be there but I got fired from my waitressing job within a week of telling them I was sick for something stupid and I've been on leave from my gas station job for a few months now because its so physically stressful. I'm used to pushing myself to the limits but my limits are a lot harder to push now and I hate having seizures at work. I'm still a nanny and I'm trying to get a receptionist job at a hospital(fingers crossed!). Then I'll just do that and the nanny thing. I'm still upbeat and everything but the past two weeks have been a little rough so I'm just a little worn down. Still have an amazing life and no depression here. So many needles. Big scary needles. They almost did one today without collin their and I almost cried. I just can't wait for an answer. Whatever it is I'll deal with it and if its fatal I'll start my bucket list and forget the hospitals lol. If its melanoma I'm probably looking at stage 3. I have a lot to do no matter how much time I have to get it done. Don't get me wrong. I'm not saying I'm dying but I AM preparing myself for anything so the worst won't be so bad and the best will be a relief. Think ink! Lol

my story, because i need to tell it

2010-11-18T03:35:41Z

I'm sure its nothing special but I'm one of those people who is there for everyone else and can't go to someone with their stresses because I'm too busy trying to keep everyone calm and happy. I just needed to tell someone what its been like for me. Earlier this year I got a divorce from a terrible marriage and became the happiest independant woman ever. I'm 22 and love my life and everything in it, good and bad. After my divorce I lost 25 lbs of stress weight and started running(my love and best friend) I eat healthy got in the best shape of my life, moved into a beautiful house and found a wonderful boyfriend. About three months ago, on a normal day, I had a mild stroke(or at least we think that's what it was) while snuggling with my boyfriend on the couch. We went to the er but I'm a waitress and we don't get healthcare so they wouldn't help me. I had seizures on and off for about 4 hrs after the mild stroke and all the did was a tox screne and a blood test. I was seizing in front of them and they said it was probably the flu and I should go home. I figured if they sent me home it couldn't really be that bad so we just tried to ignore it but ever since then I've had seizure every time I get tired. They are just strange eye twitches and don't usually last long so I got used to that because I thought maybe it would go away. A month or so later I started noticing weird bumps in my chest around my collarbone. Then my appetite turned weird. I was either hungry or nauseous. There was no in between. I had a weird seizure where I could move and talk and understand but my eyes wouldn't react to light and you could see the muscles in my chest twitching. I'd rarely ever had headaches and now I have migraines every day. Then the fatigue hit. I found a free clinic and got in after a few weeks. They told me that the bumps were severely swollen lymph nodes. They did bloodwork and found nothing, then they did a chest ct and I guess they found more swollen nodes than they expected. My options were virus, infection, cancer. The blood test ruled out virus and made infection look unlikely. We already had the cancer talk and I have a surgery tuesday to figure out for sure. I feel like I've been hit by a rather large truck pretty much all the time. I'm sure it all sounds kind of whiney but I'm still doing good. I'm not afraid of the cancer, I'm afraid of the treatments(side effects). I'm not really afraid of dying though it won't happen from this, I'm afraid of who it'll hurt. My life is amazing. I have jobs I love, a boyfriend who is there for every test, we go on dates every time I have a testand he holds my hand when they stick in the needles. I have 4 amazing dogs. A beagle mix that snuggles when I hurt, a lab who reminds me running is good for me even if I feel too tired, and two cuties my boyfriend brought. I refuse to let this change my life anymore than It has to. My doctors love me because I'm whitty and happy even when they have bad news. They're doing everything they can and call to check on my all the time and I have so many people who love me. Lol and in the very least I have an insanely comfy bed for when I just can't get out of bed(I don't let oit happen often but some days I don't have a choice). Everyone is terrified of the "C" word but its just helped me learn that you can learn to function through anything. Some daus the exhaustion gets to me and because of my weak immune system I can't run outside in the cold so I'm stuck with a human hamster wheel(treadmill) but for the most part I'm good. I'm not annoyingly optimistic but I am insanely content. Well, that's it. Thanks for listening. I just needed to talk to someone who actually understands in hopes it'll be less awkward. Lol I feel like all the sudden I don't fit in a normal crowd of people because they don't understand anymore. Its strange. Anyway... like I said, thanks.