2014 Update

Since I have had the surgery things have gotten better. What has changed? I had less headaches until recently I think I need to go to the doctor to get my shunt checked to make sure it is not blocked. Interestingly enough it could be stressed I decided to go back to school in August 2013. I am getting my Bachelor's degree in medical healthcare management. I have not had any issues with my eyes getting any worse. I did have a hysterectomy last April and they had to make sure they did not hit my shunt while performing the surgery. That is good at least. School has taken a stressful toll on me since I started back but hey I quit my job and got a different less stressful one, so that has helped.

I need to go back to see the doctor who did the surgery,anyway. My aunt went to him for a neurological issue and he asked about me. It was strange him remembering me and asking about me, but hey that is good news. I am a little concerned the insurance will cover the visit. My new insurance has changed with my new employer with all this obamacare stuff. I am a little concerned they will find something and it will not cover anything. The new healthcare regulations have hurt people who already had coverage.

Well thanks for checking in on me and I will try to keep writing every so often.

16 months post surgery

Well I changed jobs. I couldn't stand around all day at the other job all day in one spot. It bothered me that I wasn't getting enough exercise. It also has been rough to lose weight since the surgery. I have changed my diet and I have increased my activity level. Increased activity has helped I went to the doctor and the last 6 months I have lost 20 pounds. So no now I have to just keep it up.

As for the eye sight, my eye health is so much better. I am not going to lose my sight. My sight did get better with the decrease in swelling but my vision acuity has gotten a little worse for distance. I am considering eye surgery.

The Migraines are essentially gone. I occasionally get headaches now. They are just headaches not some painful thing that just puts me down for the day. I watch the foods that i eat to keep the headaches in line. My biggest concern has been my caffeine intake in concern with my headaches. I notice a difference but at least I am aware.

Pain Management is getting better with the shunt.  Yes, I have pain but not where you think I would. My head no pain at all where the shunt is located. The area at the incision in my head is sometimes tender due to sleeping on that side. Go figure. Other weird pain that happens is in my belly near that incision site, it feels like the shunt moves in my stomach or rolls sometime. Almost like it gets caught on something and tugs. Now it doesn't really move so I am having some phantom pains. They are real pains to me but at this current time the doctors can not pin point where or how it is causing me pain. In addition to this I have pain in the lower abdomen area occasionally. This pain is associated with the ovarian cyst surgery I had a month after shunt surgery. The doctors believe I am increasing in cysts and they are occasionally rupturing or rubbing causing pain. Weight loss and a controlled diet are my only helping factors at this point. I don't want to have more abdominal surgery if i can help it.

Overall the biggest drawback to my surgery has been my sexual drive. It has decreased drastically. The doctor doesn't think its mental or related to the surgery but It may actually be related to where the shunt is located in my brain. I think it is a bit of a stretch personally but I give the doctor some gusto for trying to help. I take medication and things to see if it helps. I personally think it is related to the second cyst surgery not the shunt surgery. Another drawback that is small but a peeve too is getting my hair styled or trimmed. Since my hair has grown back it has changed to a darker color. I dislike this severely. I am getting gray, white and silver growths mixed with the New color. I also can not stand it short when it comes to styling. My hair was fine and straight now it is a little thicker and more coarse with some body or curls depending on humidity. My hair grows quicker so if I like a hairstyle I to get it trimmed sooner than I used to. So my two peeves are sex and hair. How far apart could those two be on the spectrum. Now I just realized one more but its the last. My sleep cycles are off. I sleep long and short hours. I have weird cycles to my sleep. Sometimes I have insomnia or other times i feel narcoleptic. Extreme opposites but that is my insanity.

So I am doing pretty well overall and I hope that this sheds some light. If anyone you know or yourself suffers from severe migraines or have a sudden change in sight contact your doctor and if necessary a neurologist and ask those questions. It can mean the loss of your vision or your life if no treated early.

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.