update

I havent written in a while. I was getting ready to go back to work on the 1st of January but……last Sunday I passed out, only for a second, while I was walking with Hallee. I was walking and then I wasnt. I really dont know what happened. So I called my neurologist and he ordered a head CT. oday I went with a copy of the Ct to Dr Heros office, he is my neurosurgeon.
He wants me to go back on my seizure meds. I am protesting that. The meds made me sick for about a month. I am not ready for that again and since I really dont think I had a seizure, I made a deal with him. If I have another syncope, or any acute vertigo, I will start the meds, not now.
He also told me that my Ct showed some fluid leaking. Not as much as before, but it is leaking. He wants to wait for 3 months to see if my body can heal itself. He wants the swelling I am having to resolve, if it doesnt then I will need another surgery. So it looks like its a waiting game…again.
He doesnt want to open me up again right now. He said that I already have had 2 brain surgeries, an infection in my brain and he would rather not do another surgery unless it is absolutely necessary. I trust him so heal thyself my body, please. I am not upset, worried or really feeling much of anything at this point. I want this to all be over. I guess I just need to remain patient.

Oh boy

So I had to go to JMH er on Monday. My right arm was painful, swollen, red and hot. My Neurosurgeon’s office told me they would call the on call doctor and it would be a quick thing….12 hours later I was crying, hating the profession of nursing and getting ready to sign myself out AMA (against medical advise). After all that, I had no blood clot in my arm, they pulled my picc line and they sent me home. My arm still hurts badly, i have a rash around the insertion site, I feel terrible and I am wondering what next?

All this and the girl who is renting my condo in Tallahassee called to tell me she moved out, no warning, no notice…does anyone care about my mental health? On top of that the boy who was renting and still owes me money hasnt sent it, his mother, an employee of Memorial and a co-worker of mine is being a selfish nasty women and will not take any responsibility for her child. I dont understand that more than anything else. What kind of mother is she, what kind of person is she???

I have always been a kind giving person. My house a safe place for everyone. Why am I being treated like this? Why? My head is spinning, I need something good to happen.

My kids are great, healthy and happy. Connie is wonderful, being patient with my bad moods but why cant something just amazing happen in my life. When will I go through one day not worrying? Worrying how to pay bills, worrying about me health, worrying about how to take care of my family. Please just one day, one day of no stress, one day where everything goes right. Dont get me wrong, I am thankful for all the fantastic things in my life and for my life itself. I am having a pity party…..anyone want to join me?

success

Hallee is now an official bike rider

Phone Call

This AM I got a call from my Neurologist. It might not seem like an odd thing considering I have had 2 major brain surgeries in the past 3 months, have an abnormal EEG, and am on seizure medicine. This might not seem odd, but I havent heard from him in 2 months, I have been calling his office for 1 1/2 weeks to try and make an appointment and have not received a return phone call from his appointment person. So out of the blue he decides to check up on me. I was surprised. I told him I had my second surgery, I told him I have been weening myself off my seizure medicine and I told him that I have been feeling better since my care had been taken over by the doctors at Jackson Memorial Hospital. This is very sad, I have always been proud of my hospital and the care we give. I am still proud of the care we give, we the nurses. I am not so proud of the behavior of our doctors. Oh well, I am healthy and that is really all that matters.

Today I am going to teach my 14 year old daughter how to ride a bike. Yes she is 14 and doesnt know how to ride a bike. Her dad bought her a beautiful red bike yesterday. red was an interesting choice, I think he chose it so that it would hide the blood stains that may appear as a result of the learning process. It should be interesting, I will let you know how it goes.

Meagan left for school today, I am sad. The other two tenants have left so things are getting back to normal. I am having Deadliest Catch withdrawls, trying to find something new to watch. Megan wants a millionaire is not the show for me. I choose to believe she isnt really that mean, shallow and stupid. I choose to believe it is all for TV but I dont know….how low can TV go. I also dont like Chance at Love 2, why would you need another year of that? Jon and Kate is out, they are both gross. Brooke knows best, really, does she? I do enjoy Cash Cab, it makes me feel smarter than I do when I watch Jeopardy. I have been watching Weeds seasons 1-4. I loved the show at the beginning but at the end of season 4 it became idiotic. I hope they can recover in season 5.

I am going outside now to begin the bike riding lessons. Wish us luck!!!

Is been a while

I am still getting IV vanco….poop. I still hate it, I still hate my picc line. I love so many other things though. I love my kids and Connie. They make everyday an adventure. I love my friends, they make me laugh. I love taking long rides in the jeep. I always looked at people in cool jeeps…they look hot. I look anything but hot. I have to keep my arm covered so I usually wrap it in a towel. I have to keep my head covered so i usually wear a hat. Connie’s neice Allison sent me this very cute yet nerdy hat, it is pink, green, white maybe purple and yellow plaid. It is what I think they call a bucket hat. I look so terrible that even in the really cool jeep, i look like poop. I cant wait for the day I can look great to someone other than my kids and Connie who always think I am beautiful.

I decided today, on my way to being hot again, that I need a bike. Connie is going to get me one, I can’t decide between a really cool boss cruiser, a fantastic grey raileigh or a white and blue cannondale. I like them all. I told Connie to go to the shop and surprise me with the one she thinks is best. I usually dont like surprises but I am excited for this one.

Today was sushi sunday. We go to the same place every Sunday. Now I have a tummy ache and all I can think about is chocolate peanut butter baskin and robbins ice cream…..not to good for my hotness. I will start the road to hot in the morning!!!!

SHOWER!!!!!

So…….Today I got to take a real shower and wash my hair!!!!!  I woke up extra early: 5am to be exact, so I would still be able to hook up to my Vanco by 6am.  I have been giving myself sponge baths for the last week and a half.  That totally has sucked.  I dont have a sense of smell so I never knew if my sponge techniques were effective.  I was never sure if I got all the soap out of my lanky (private parts).  This caused me stress, I surely didnt want to get a yeast infection.  I dont need any more problems.  Needless to say I now feel like Mrs. America!!!  My hair looks fabulous in a weird kind of way.  I will go to the hair dresser in the next couple of weeks and get some funky new do.  I am excited, I am not sure what they will be able to do but it cant look worse.  Maybe some time in the next week or so I will put on some make-up…..stay tuned.

Vanco

I am so tired of getting the IV Vanco.  My picc line doesn’t work well, it takes two hours for my infusion and I have to do it twice a day.  If you know me, and you must if you are reading my blog, you know this is torture for me.  I never sit still, i never rest. (an on going argument in my house)  I still have no sense of taste or smell and my face remains deformed.  It is a good thing that I am not vain.  I have always believed that beauty is on the inside so that goodness for that.  I have always had great self esteem, this is coming in very handy now that I am deformed.  If people don’t love me for me than that is their problem and not mine.

The rest of my life is awesome.  My kids are great.  Tobi started her own jewelry line, it is fantastic, check it out on facebook, the name of the company is Little Dream Jewelery.  Meagan is great, got a call back to Bushe Gardens and Hallee finally is without her cast.  She is doing fantastic at Lovewell.  I am very proud of all my kids.  Connie is great, she had a wonderful time in Alaska, brought me back lots of presents.  My favorites are the ones having to do with the Deadliest Catch.  That is my new obsession.  When you are home bound and bored all there is to do is watch these crazy reality shows.  I watched Daisy of Love and that show grossed me out.  I am not a tattoo fan and she is covered in them, her lips are disgusting and she is just foul.  I watched the Real World but that just makes me miss my younger years.  Cribs just pisses me off all together.  I  like the bachelorette, but she is blind to the men and I get angry.  However, I have become obsessed with the Deadliest Catch.  I love Captains Phil, Andy and Sig.  I don’t like Captain Keith, I think he is mean.  I love the danger , and it really is dangerous.  I love the skill it takes to crab fish.  Yes, it does take skill.  I hate that they smoke so much, I am going to write a letter about that.  It really is an awesome show, check it out on the Discovery channel.  Then we can have something to talk about other than this stupid brain tumor and all my complications!!!

Crazy

Last night I drove with Meagan and her friend Meredith to Orlando so Meagan could try out for American Idol.  I have been bugging Meagan for years to audition, she never would until now….finally!!!  We got in line at 511am, there were about 4 thousand people ahead of us in line.  At 6am I needed some water and as we were walking toward the tent I asked one of the American Idol people how long he felt it would take for us to be finished with registration.  I was talking to him with a big scar on my head covered in staples and sutures and an equally large IV line sticking out of my right arm.   This was a very calculated move on my part, Meagan was horrified that I was using my brain tumor and 2nd surgery to bring her more attention.  I told this man I had to administer IV medication before 8 am and I needed this time frame to see if I needed to go back and get my medication and IV pole and give my medication in line or would I make it back to my room by 830am,  This man felt so bad for me and walked me over to a special area for registration.  Meagan and Meredith came with me, we waited about 30 more minutes and got registered there.  Meredith and I both got wristbands despite the rules of only one other person besides the person auditioning were aloud to go in.  We were told we needed to return on Thursday at 7am, everyone else needs to start lining up at 5am, and we would not need to wait on Thurday to go inside.  My plan is working great!!!!

I feel pretty good.  I have to give myself Vanco twice daily for the next 6 weeks, and then my doctor will decide wether I need an additonal surgery.  The right side of my face is a lot less swollen, I need to keep a close eye on that.  My right eyelid is drooping and my eyebrow is flat.  My right eye seems smaller than the left.  I am deformed, alive but deformed.  I had hair to help hide my deformity but not any more.  Oh well, I am alive and very happy about that!!!

SO

I go to Jackson Memorial Hospital today for pre-op testing.  They will tell me what time I have to be at the hospital on Wednesday.  I have been having a CSF leak for the past couple of weeks.  I went to the Neuro Surgeon who did my surgery and told him my face was very swollen, he said “you have been swollen since surgery”  I said this was different and again had to beg for a CT.  The  office called the next day and I went in only to be told to wrap an ace wrap around my head.  I tried this, as crazy as it sounded, and all it did was cause me pain.  My swelling increased, my pain increased and all my doctors office could say was to suck it up and wear the ace wrap.  This office was making me feel horrible.  I felt like I was inconveniencing them, I was being one of those problem patients.  I never asked for drugs, didn’t think I was being unreasonable, but I felt like a dirt bag.  

I then took a chance and called Dr Heros, the Neuro-Surgeon I saw a Jackson for a second opinion.  I didn’t think he would see me since he had not done my surgery, but I was wrong.  His office was very kind to me and mad me an appointment quickly to see my face and evaluate my swelling, they also told me they never heard of wrapping an ace-wrap around the head and told me not to do it.  I saw him a week ago Monday.  He told me he was very concerned, not only about the swelling, but also the was my suture line looked.  He actually touched my head, something my other doctor hadn’t done since surgery.  Dr. Heros ordered some lab work and asked me to come back yesterday.

Johann and I went to Jackson together yesterday.  Dr. Heros saw my face and said “I need to take you to surgery now before we have more of a mess than we already have”.  I thought maybe surgery would be next week but he said he needed to do it on Tuesday.  I was shocked.  He changed the day to Wednesday so I could get my testing done.  

I am going through many emotions at this moment.  I am angry at my original Neuro-Surgeons, I am upset I am not going to Memorial for my surgerybut extremely greatful to Dr Heros.  I am so thankful for Heather and Johann, they make sure I am OK and have gone to every appointment I have had, pre-op my first surgery until now.  Heather and Neil brought over dinner last night and brought enough food so that I wouldnt have to worry about cooking for a few days.  I am worried about my kids, they are scared.  Connie is out of town for her parents 50th wedding anniversary.  She is on a cruise and unable to come home.  She is upset, worried, angry and I cant do anything to help her.

This surgery is an unknown.  I signed a consent for a crainiotomy for epidural abcess.  Dr. Heros told me her really wont know exactly what he is going to have to do until he opens up my head.  It can be as simple as going through my scalp, cleaning things up, finding the leak and closing me up.  That would be great and I would be out of the hospital in a couple of days. My luck hasnt been great so I am guessing it just wont be that easy.  If the bone is infected, that would be bad, if the CSF is infected, that would be bad…keep praying.  I will need one more surgery to place a synthetic material over the hole in my skull that was made after my first surgery.

I am hopeful that Dr Heros will make everything that is wrong, right.  He is awesome.  This is horrible timing.  Meagan is auditioning for American Idol, we were leaving on July 6th.  I am going with her, I don’t care what I have to do, I can recuperate anywhere so keep you fingers crossed I will be out of the hospital before the 6th.  Last but not least…Break a leg Lovewell Junior!!!!

Back to the OR

I will be heading back to the OR on Wednesday.  I am having another brain surgery.  Details to follow……