Sun and Heat

So the heat hasn't exactly been a friend to me. Yesterday I felt like I was having chest pains. Today I feel like my head was run over by a freight train. Overall, I feel better since the surgery but I have bad days. Some days I feel like I am gonna hurl, others like yesterday weird things like a weird light sensitivity or pain in a strange region.
The sun so far has been nice, no burns but I feel like I am burning which is strange.  I also feel itchy a lot which is odd in itself. You would think the two have nothing to do with each other, but hey what do I know.
The most major side effect since the surgery has been weight gain. It has not been a lot of fun. My activity level is different, which doesn't help. I have been tring to do more. Swimming had been my favorite past time, I just dont get to do it as often as I like.
With vacation from work next week we will see I hope to have all good days.

Medical Release

I can not believe how big a deal it is to have a medical release to go back to work. I have been on the phone with both surgeons assistants, the insurance company and the short term disability company. Just to get them all on the same page. I am being released to go back to work March 7th. I am looking forward to it, I miss being at work sometimes. Don't get me wrong I enjoy staying home and visiting with my daughter and partner and step kids, but work feels the basic need of getting out of the house and socializing with my coworkers.

While I have been home from work for these surgeries I have had people visit and I have visited a few, but with the weather being a wintry mix for weeks on end I didn't really leave much. I really hope that with my return to work my short days are just what the doctor ordered to get me used to being back on my feet again. Hopefully the pelvic pain stays away. I hate being in pain and working.

Next week I plan on going to work to get my schedule, drop off a few things for some coworkers and find out if our new shirts have come in. I hope they did not institute a new dress code while I was gone. I don't want to have to shop for new clothes to go back to work. I should only be working a few days a week not a full week to start off. Medical release has also put restrictions on my lifting too, at work, five pounds. Not that I lifted that much at work any way.

I have noticed since both surgeries a lot less headaches. Notice I did not say migraines. It is amazing at the difference. I also have finally started healing from the pelvic pain so with the decrease of both issues I look forward to more activity and sunshine. :)

Well now to get back on a better sleep pattern. I need to make sure I am not up at all hours of the night. It would truly help if I had a better bed, but that is a story for a different day.

pseudotumor cerebri & ventriculo-peritoneal shunt: Cabin Fever

pseudotumor cerebri & ventriculo-peritoneal shunt: Cabin Fever

Cabin Fever

Since surgery, I have not wanted to leave the house. I have been sitting in the house keeping to myself. Watching my netflix shows and sleeping. My children were driving me batty because they were home from school due to inclement weather and ailments. Now I am feeling better and I want out of the house. Saturday I got the mail I was waiting on, my check for short term disability, and I drove to the bank to deposit the check before they closed. I figured, the bank is not far, I should be able to drive.

I drove and immediately my right side in my abdomen started hurting from the muscles being pulled. Then I got jiggled around in the car and other things started to hurt also. I came home immediately after the deposit and took two pain pills. I wanted to cry. I should have been able to drive, it has been 16 days, by my calculations since surgery. Apparently, my body does not like me.

My significant other was not happy with me, when he woke up, to find me sleeping on the couch. I was awakened by a man wanting to know how the car got moved. I told him I drove to the bank to see if i could drive without pain. I was wrong. The look on my face told him I was in pain. I still wanted out of the house. I had a need to leave for food or something I just needed out. Sunlight, anything to make me feel like I am not stuck in my own home. I asked him to drive me to a restaurant for a meal, I was craving Mexican food. I got what I was craving, fajitas. Delicioso. My stomach was satisfied. We then went shopping for some craft supplies at Hobby Lobby and he pushed me around in a wheelchair so I would not be in pain.

Simply put my little escapade accomplished my goal and got me out into the real world. I do not feel as cooped up, but i do feel the need to leave more. That night I invited my father over. We played one of his new games he got  for Christmas. It was a fantastic evening. I had some great Starbucks coffee, grande Mocha. Enjoyed some quality family time. I did allow my daughter to leave to stay the night at a friends house and to go roller skating. My step son went to his mothers and went to see OZZY OSBOURNE in concert at the SPRINT CENTER, with her and his brother. Jealous, is all I can say.

What keeps me sane?

To keep me sane from going crazy sitting in the house all day since surgery I sleep a lot. I get tired of sleeping and I browse the web, check email, I don not play the games on facebook.com.  My Mother plays my facebook games for me. I do not have the patience for Farmville anymore or Mafia wars. I know sounds kind of ridiculous but since she had her hysterectomy she needed something to do and Farmville was her thing, that and buying and selling on Ebay. It is a good sanity tool for some, just not me. I am not a shopper person and I am not a horder. I may not like to clean but I like to organize. You figure these things out about yourself and you keep your sanity.

No one ever imagines themselves laid up at home and not able to leave. You really should consider these things it happens to everyone. The first time it happened to me I had injured my wrist at my job and was on workers comp for 6 weeks. I sat at home all day long browsing the web and listening to the radio trying to win giveaways. Just so we know I won a $1000 off the radio and it helped with my bills. All I had to do was be the right caller. The web browsing netted me a crazy boyfriend while I was finishing my college degree. Internet dating was not my thing.  It made me crazier, cause I was creating turmoil with the internet boyfriends. To keep sane you have to not create turmoil or confusion for yourself. I didn't learn this until many years down the road. That is the nice part about being in my thirties I have done the stupid stuff and don't feel the need anymore to do those things.

Now I sit at home mid-winter, with my children on snow days like today, Trying to occupy myself. My restrictions have limited what I can do to the degree that I can not organize my house; due to I could reopen my scars from lifting. So no lifting, trust me I would rather be reorganizing than sitting on my bottom all day. They also say no exercising, so there went my new years resolution to lose weight. Most of my muscles have degenerated to just tissue not muscle anymore. Due to having the pseudotumor, I would rest lots to make the headaches go away. So I did not gain weight I just lost muscle shape in the last 6 months up until surgery. I do not like that by any means because I look like I have gained weight and I have not. So it will be a struggle to gain muscle definition back. In all regions of my muscles, I know there is a difference, I lost shape in my calves, upper arms, neck, belly and thighs.

So today I sit here after getting out of bed at noon because the kids had a snow day and I wanted to sleep next to my partner after he got home from working all night. His third-shift schedule really throws me for a loop still. I do not cuddle with anyone 5 nights a week and when he is home on the weekends I have to share the bed, except during recovery from surgery he wouldn't even sleep in the same room with me afraid to hurt me. He slept on a trundle bed in my daughters room or on the couch in the living room or the basement. I felt bad but not enough to share the bed. This is my time remember recovery, now I share the bed but I feel as if I slept better it was a more of a quality sleep. My mind is rested but my body still aches.

Normally during recovery I have moved to the living room found the comfy chair and taken control of it. I currently sit in this chair web browsing in my living room, while my daughter does the same from the couch and my step son is playing the ps3 with his Christmas present of black-ops. using his birthday present of a wireless bluetooth headphones for his game. What else would a 13-year-old boy do on a snow day? At least we have all gotten out of our pj's to do our respective sane activities. Shortly, I will be watching Netflix because that is what I do. We do not have cable, we have internet. We do not have a tv in the living room we have a computer with a large monitor. This allows us to watch movies and tv shows in the comfort of the living room.

Maybe later today I will still get my visitors who said they would visit today. Highly doubtful considering the weather. I do not want them risking themselves driving on slick roads. I shall find something to occupy myself I have children at home today. It is a snow day for them, it should be one for me too. I still love snow days. Acting like a child is what keeps me sane. Reading books and pretending I can visualize what the characters are doing; that allows me to get away from reality and keep my sanity.

11 days since shunt surgery for pseudotumor cerebri

Well today has been 11 days since surgery. It has been an up and down road for me. My family has given me patience to help me in this trying time. They were just as scared as I was before I had surgery. This procedure is supposed to help with my headaches to be reduced and vision to come back in small doses. Good news i had my staples out today, my daughter counted I had 39 staples, between my belly, head and neck. My condition is rare according to my doctor. I keep seeing more and more cases every day on line. I am an overweight, white, female with vision loss and suffers with severe migraines; also have a few other medical issues like polycystic ovarian syndsome and metabolic syndrome. So I was diagnosed with pseudotumor in november for sure by my neuro surgeon. My neurologist thought I had it all the way back in August of 2010. I had a six week migraine from July 4 th all the way to Mid August. I was a pain and very moody with my family. The task of functioning on a daily basis was very hard. So over the last few months I coped with the migraines and did my best to act like nothing was wrong. I wanted to be that strong willed woman who could stand through anything. I was wrong. This is one thing I can stand alone in.

All my walls came crashing down. I could not do this alone and still work, take care of my family and keep mentally stable. The last one was tricky. I had a few breakdowns at work and at home. i am not one to cry and whine that I am having issues or that I need help. But I did just that. I cried at work and showed my boss I could not traverse this alone. I asked for some extra time off to handle things and to rest and for Dr. appointments and ct scans and mri's. In October I was so sure I was going to have surgery I googled pseudotumor cerebri. Not a pretty site to read about on line well those linked  to Youtube.com and the  images were even more disturbing. I tweeted and facebooked that I was losing my mind. I cried myself to sleep while my loved ones were none the wiser. I found out about the way my head could look after surgery and thought they might open all of my head not just one side. I was set on this due to test saying I have small ventriculars.

My coworkers, god bless them calmed me down from my freak-out episodes. I love each and everyone of them for their concern and calming effects. My family was aware of the situation but not apprised of my mind being so out there. My partner worked nights so he was unaware misgivings. Being on two separate schedules made him think I was very well aware of the situation and there was nothing to worry about.   In December, my neurosurgeon so get ready for surgery. So I mentally prepared to be strong and stable for my family to keep them calm. I think I was the one who was more freaked -out. It was my head they were going into and my life that could be lost if there was a mistake. So my partner and I talked about the surgery and when it would be. After Christmas in the new year to make it easier on work and my family.We could spend the holidays together relaxing and enjoying each other's company.

So Jan. 4th rolled around I cut my hair all off for the procedures the next day. I decided to donate my hair to Pantene for their wig program. I went out with my coworkers for a hoorah. Then the next day I went to the hospital for a ct scan and some fiducials. These are markers on your head where they line up the scan to make sure they are in the right spot. To make sure your Dr. goes in at the right location. So i went home after my scan and spent time with the family. I didn't feel well. my stomach was upset I just had a light dinner. Then I read a book and went to bed. On the 6th , my daughter and step-son went to the hospital with me and my partner for me to have surgery for the shunt.

I checked in at the desk and had to wait for 30 mins to be taken back to the preop prep room. I got hooked up to an IV and then my family came back to visit. I watched some television and chatted with them. I then finally got rolled back to or. I remember my nurses telling me to breathe the oxygen and then them discussing oxygen bars in vegas. Next thing I know I wake up in the recovery room and asked for my partner I wanted him. I felt like I had to know he was there. They said no one was allowed back there in that area to visit but I insisted, i visited as coherently as you can just out of surgery and then they took me to my room.


My head felt like the skin was stretched so far that a gremlin would come out yell surprise. I still think my skull looks like a klingon with the ridge from the box and then the tube coming down the side. I was in the hospital for one night and then I was able to go home.I was so happy about going home. I looked like a drooling person in the car looking out the window. I hit my head getting out of the car. That was painful. So I spent the next week in the house resting and sleeping the entire day away  healing. The swelling went down I look a bit less tragic in my opinion. The pain subsided, well most of it, I would occasionally have pain in my side and belly from the shunt. Then they called and said I needed to go to my primary care physician at the original hospital I go to for a sonogram because they found ovarian cyst during my ct scan at the hospital after the surgery checking on my shunt placement.  So I drank too much water and my shunt started hurtung but hey they could do the sonogram apparently the pain in my abdomen was from the cyst one had ruptured. Owwe.

So today I visited my dr. I had my staples removed. They did not react well to my skin. I turned pink in certain areas. I have to keep the incisions clean and let them dry to form a better scab. I go back in 3 weeks for a check up. But this is day 11 now 12 now headaches. My vision got better up close I have to take my glasses off because my vision gets blurry unless I take them off to read. Good signs.

Time for some real improvement during my time off from work for the next few weeks. Apparently I do not go back to work until March. according to my short term disability.