Catching UP

I have not blogged in awhile, but then again a lot has happened since then.

Since my last post I've not had any more brain surgeries, thank God! I have been in the hospital MANY times though. In my last post I think I had just had my 17th LP? I'm not sure I'm right on this brain fog.... Just a few weeks ago I had my 37th LP. Yep, that is a lot of LPs.

Also since then I recently turned 19, but it hasn't changed anything for me really. Just the number of my age. Also I was approved for SSI, but I only had it for 11 months, then they decided since I went from every 2 weeks in the hospital to every 2 months, I was okay to get a job. REALLY?!? Yeah, that was my life. *Sigh* I have a tough time getting through everyday. The pain sometimes is so intense I had a hard time getting out of the bed. My mom used to be so supportive of me and so empathetic to me. And would realize I couldn't do certain things. But now? Yeah, no I'm expected to do a whole bunch of things everyday, like I don't spend everyday in complete agony. Now she just says, "Well, you don't hurt as bad as I do". Yes; I understand she hurts too. She has arthritis in every joint in her body. I get it, that's painful. But I'm aloud to hurt too. My dad at least understands my struggle and doesn't ask a lot of me. Some days I can do more, others I can only do the bare minimum.

But on a bright note during my MIA time I also became an auntie! This is little Liam. He is one of the only joys in my life. Playing with him always brightens up my days.

And then 15 months later became an auntie for the second time! This is little Malikai.

I think I'm gonna sign off. I need to sleep. I've been lately a big night owl, and I can't sleep till late. So, I need to get off so I can get some sleep.

Should I? Or shouldn't I? That is the question.

Have you ever had an opportunity to do something you'd never think in a million years you'd ever do? Or even think of doing? I have! Just recently we came upon something that could potentially put my IH into remission. Yes, there's no cure but, this one thing could possibly put me into remission and I'd hopefully never have to go to the hospital again. But, unfortunately the one thing is quite unorthodox. It could even get us into really big trouble. But, I live in SUCH excruciating pain almost everyday, that I have considered doing the unorthodox thing. Even my mom has found a way for me to do it. Certain family members have said that they are against me doing it. I've told them in no uncertain terms that if it gets me where I'm not in pain anymore, I'd probably do it. If you live in the pain us IHer's do, you'd consider doing anything. If a doctor told me that spinning on my head while whistling Dixie would help, I'd do it to get out of this pain! So yes, I've really weighed out my options on doing this. I've almost completely come to a conclusion that I will do it if I won't have a headache everyday. Really I'm doing this blog post to rant on the one thing that could potentially help me. Half of me is saying no way I'd rather live in pain then get into trouble. But, when my pressure is up and I'm SO much pain, I think yes I'd totally do it, even if I can get into trouble!

Interesting Turn Around

So, sorry I've been MIA lately. My last post on Friday Oct. 18th, yeah, SO much happened since then! Well, let's start from the beginning. That following Sunday, I did NOT feel well at all. I couldn't even get myself to go to church! (And I try my hardest to go every Sunday, even if I don't feel well.) At first I thought I was just coming down with some virus or something. I was extremely tired (Not unusual for me, but still), I had a headache, again I didn't think anything of it because I have a headache everyday. And my throat was extremely raw and hurting. Later that night I felt my headache get progressively worse. Then I really did NOT feel well. I was very nauseous and the heartbeat in my ears was getting worse. I was really fighting it. I did not want to go to the hospital AGAIN! It wasn't until my sister came into my room and saw me crying on my bed. She asked what was wrong and I told her all that was bothering me. She got a look on her face I've learned to recognize as the "Oh, no she's having another one of her episodes" look. She told me to check my eyes, as when my pressure goes high my eyesight gets really blurry. I checked my eyes and just sighed and flopped my head back on my pillow and started crying again. By my reaction she knew what was going on and ran to tell my parents. Then it was lightening speed quick and before I knew it I was in the car on the way to the hospital again. So, fast forward to the next morning. I'm sitting (or really laying) in my hospital bed waiting my 17th LP, when in walks my neurosurgeon, (the one who practically wiped his hands of me). I was stunned to say the least when I saw him walk in. I know they notify him every time I'm admitted to the hospital, just so he knows about it, but I didn't think he'd come! (Well, because he stopped visiting me during my many hospital stays awhile ago, when he said, "there's nothing more I can do for her. I put in the shunt that's all I'm doing".) So, imagine my surprise when he not only comes to "visit" me, but says "I have an opening at noon, we can take you down and I can reopen your incisions and hopefully see why the shunt doesn't seem to be working!" WHAT?!?! So, he's suggesting ANOTHER brain surgery!?! And on top of that he doesn't even give me much time to think it over. Seeing as how he moseyed into my room at 10A.M. So, he's saying I only have two hours to process that I'm having brain surgery today? Yeah, I was shocked too! So, I indeed have brain surgery again. But this time thankfully he didn't shave my whole head, only the part he needed! Thank God! Afterwards I find out that my shunt was indeed not working anymore. The tubing of it was completely blocked. So he unblocked it, added some new crap into my brain and said let's hope this works this time! So, I go home the next day! (Yes, only in my state do you have BRAIN surgery and go home the next day!) I'm home recovering, then I think, crap I have a job! But I don't want to go to work. Usually in times like when I'm in the hospital I have my sister take over for me. Not this time however. See, she was sick along with me. (Because I did in fact have a virus so I was sick too.) I had my dad call them and say that I was not able to work, because I was sick, and so was my sister. So, needless to say they weren't happy. But what could we do? We were sick. Did they want us to get their kids sick? So, when we were both not sick, but I was still not up to working. My sister graciously said she'd work for me one of the days to give me more time to recover. So, I text them and tell them the plan. But, they do not reply back. It wasn't till the day before my sister was to work for me that they call and say I'm fired! Yeah, the only job I could get with my condition and I'm fired from it! So, now the only normal thing in my life is gone! Since I was fired and I would never be able to hold down a normal job, I'm in the process of being put on disability. Yes, I'm a teenager and I look and act perfectly normal and I'm being put on disability! That's what's been happening over here in my stressful life. Hope y'all have a great week!

Exhaustion... Isn't it miserable?

So, here I am at work and the kids are being relatively good. Now that's saying something! Only I can barely keep my eyes open just sitting here. Anyone ever have to deal with that? I do! With IH as I said in my previous post that I have, comes EXTREME exhaustion! It's miserable! I wake up tired. I feel like a could sleep a week and STILL be tired! Now imagine feeling like this EVERYDAY! It's irritating.... And no one ever gets it! I could say I'm tired, and all they say, "Well, go take a nap." Except I could take a nap and still wake up tired. I once slept like ALL day (Still don't know how my family allowed me to), and still went to bed early and slept in late. How is that?! I also suffer from insomnia... Add that to always being tired. Not a good mix! It's just so hard to make it through the day without falling asleep on my feet. People can try to understand how I feel most of the time, but they don't, no matter how hard they try. So imagine trying to do everyday things with this extreme exhaustion I have... Really hard! I have to get up at the crack of dawn EVERY morning and take stupid medicine that doesn't seem to help me. I have to get ready for work and be out the door around 7 A.M. Then I have to deal with these hoodlums that drive me to the point of INSANITY! And try not to fall asleep randomly throughout the day. Then I get home and try to spend as much time with my family as possible before I go to sleep earlier than my little brother does so that way I can have a decent amount of sleep. (Even though it doesn't help with the tiredness all day). And on top of all of that, the medicine the doctors keep putting me on, even though it doesn't help, causes drowsiness. Oh, joy! So enough of me rambling about tiredness and random things I need to sign off and get back to seriously thinking of duct taping the kids in the closet! JK... Maybe...

Introducing Myself

Hello. Probably no one will ever read this blog but me, but it's a way for me to get my feelings out and not hurt anyone. Let's just call me an overstressed individual who has a lot going in her world and needs a place to vent. I'm a teenager trying to live in this adult world with troubles most teenagers couldn't even fathom! I have this rare disease called Intracranial Hypertension or most people know it as Pseudotumor Cerebri. Intracranial hypertension (IH), sometimes called by the older name pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased intracranial pressure (pressure around the brain. The main symptoms are headache, nausea, and vomiting, as well as pulsatile tinnitus (buzzing in the ears synchronous with the pulse), double vision and other visual symptoms. If untreated, it may lead to swelling of the optic disc in the eye, which can progress to vision loss. A lot to take huh? Yeah, that's been my life for about a year. No one knows what causes it and no one has a cure. The doctors think they have a cure with people who aren't stereotypical in todays society i.e people who aren't skinny. Now, I'm not your typical girl, I'm NOT skinny and I won't pretend to be. But I'm not huge either. But all the doctors see is a girl who's not 100 pounds soaking wet. So what's their cure? Just lose weight. Well, that's hard you see. Women they work, and work and work to lose the weight and they maybe will lose 5 pounds. A man? He might think of skipping a meal in his life and lose 10 pounds. So, it's hard, but with odds stacked against you like I do? Well it makes it almost impossible! So here I am working my butt off to lose weight and what happens? I stay in this stupid range of weight and won't go down at ALL! I also have a job and try to live as normal a life as I can, with being in the hospital ALL the TIME! So, what job could a teenager get and wouldn't get fired by all the times she's had to miss work? A nanny. I'm a nanny to three hoodlums...Achm three kids with problems I won't even begin with this post. You'll probably hear more about them as I vent out my frustrations in the form of this blog. My employers, well... one of my employers is really good about me being in the hospital all the time. So, I have this nanny job and it pays okay. Do I think I'm getting paid enough? Heck no! But its reasonable and I have a sense of normalcy in my life for now. So, this is my life, and now you know just some of my frustrations that would make me an overstressed individual.