What is normal?

So, kind of a depressing blog today, I know it's been a while.  Depressing because that is the mood I am in...this blog is titled what is normal because I always say I just want to be normal again.  But really...my normal is just different now I guess.

Normal for me used to be, get up go to work, come home and do it again the next day and then throw some softball, family and friends in there and that was my normal.  I want this normal back.

Nothing is normal now, well the normal I was used too.  Now my normal is, wake up and take medication then wait until it kicks in so I can move, depending on the nausea and head situation of the day eat something.  Sit my button the couch or lay in bed depending on the "how bad do I feel today scale?"  Plan out my doctors appointments and arrange how I am going to get there in case I can't driive at that time.  Watch my medication to make sure I have enough or to see if I need a re-fill.  Run all over the place to my team of doctors....and then throw in the ER visits.

It is a project to do anything since I am constantly in pain...I clean for a few minutes than lay down or sit down depending on my pain-o-meter for the day.

I can never make plans with people because I may have to cancel at the last minute, friends fade fast as some don't understand and get mad or fed up, and some understand but just don't want to make me have to cancel so they dont invite me.

Yeah, this is a pity party blog today, but I am strong everyday and just put up with my "new normal" so everyone deserves a pity party here and there.

I miss sports so much...today my Mom and I were in Stop & Shop waiting for my prescriptions and there were these 2 little boys running all over the place...where were the parents?  but that's a whole different blog lol...but I looked at them and almost started crying and said to my Mom, I remember being able to run.  I miss running, I miss slamming the ball into the outfield, and doing a split at first base to catch the ball.  I miss pitching, fast pitch...I used to be able to throw the ball 55-60 mph...I want that normal back.  I miss volleyball the most...going up for the hit or the block, diving and digging a hard hit with a perfect pass to the setter, serving and ace and then going to the middle of the court to do our ace cheer.

But, enough whining, I need to get used to my new normal, resting alot, calm hobbies and trying to be as healthy as I can.  I can get used to it but I will still hate it!

I want my old normal back, but time to move on and get in good with my new normal.

<3 & hugs

Hand, Foot & Mouth

So, Steve, my husband, now has hand, foot & mouth disease aka coxsackie virus, he is miserable!!  He has swollen itchy hands, they look like when you take those rubber gloves at the doctor's office and blow them up like a balloon, yeah that is what his hands look like...scary!  He has red, hot swollen patches on his arms, feet and chest, he has joint pain all over, and he keeps funning a fever of 102.  But he says he is fine because he is invinceable.

My personal opinion is that he is being tough for me because I am totally not used to being on this end of someone being sick, I am usually the one yelling at people not to help me, and that I am fine.  I am not good at being on this side of the table...and I actually now know what it is like to be in the shoes of those who care about me and try to help when I am in the hospital or recovering from one of my surgeries.  Sometimes one of my friends or family members will say I wish I could do something to help you, and I always thought they were saying that out of pity, like look at the girl laying in the hospital bed with needles in her arms who is all hooked up to monitors and is in so much pain and thinking I feel so sorry for her.  I hate pity, don't pity me, I am good and always will be as far as anyone but me is concerned no matter how I really feel inside.  Well, seeing my husband, someone I love and care for so much in so much pain he can barely walk and has no use of his hands and is just on the couch under covers laying there so quiet and still and I feel helpless that I can't fix it for him.

I'm not taking this too seriously I know he will be fine in a few days but it just made me think.

On another note I pulled an IH doctor appointment scheduling moment lol, 2 appointments at 9am Thursday morning, I love it when that happens, duh what an idiot I am. lol

Also on a nother note, does anyone else find the Skittles commercials so creepy and weird, oh and also that pudding face commercial seriously creeps me out!  Who thinks of this stuff??  I think that the percentage of acid droppers must have gone way up recently!

So I find out Thursday am if I can go back to work next week or not...oh how I want to go back to work for many reasons:

1 - PAYCHECK Biotches!!  We need money, who doesn't right now?
2 - To see all my co-workers as I get along with most of them
3 - To see my bestest friend Lisa T, I miss her like crazy we haven't been able to see eachother in forever because I'm not working and it is hard for me to go places as I cant see well in the dark anymore and shouldn't be driving, I will give my reason why after my list of reasons of why I cant wait to go back to work.
4 - To feel like I am a valuable part of society, if I had children it would be different but staying home all day everyday except for doctors appointments, I miss being around people and doing a job and earning money.

So that's my list, please please please Dr. G let me go back to work!!

Ok, about the driving issue...a few weeks ago I was driving home at night in the dark with my Mom in the car.  I saw something in the middle of the road and slammed on my brakes, my Mom yells, "what are you doing?!"  I realized then that what I saw in the middle of the road was a blind spot in my eye from my IH.  So...I don't think driving at night is safe for me anymore, right?  This makes me really sad, yet another thing that IH has taken away from me.  But, I will keep that smile on my face and pretend that everything is fine, it could always be worse, right?

I have a gripe today too, with all of television channels...why do they play Christmas or Thanksgiving episodes in spring or summer?  Really, save it for the season, it is just weird to watch Santa Claus, Michael Scott in The Office, sit people on his lap and ask them what they want for Christmas in May.  it is the same as when stores put items out for holidays like 3 or 4 months in advance.  And, it keeps getting ealier and earlier, I am now seeing Christmas items in August, really?!?!  Oh and I was just in the grocery store today and saw fireworks, they are legal here in CT, for the 4th of July, it is May people!!  may, not even June and more importantly not even July.  I could see putting them out in like the 2nd week of June, that would make sense.  Same as I can see putting Christmas stuff out in November.  But in August we still have Labor Day and Halloween to get through and there are singing Santa's and ice skating villages out in the aisles.  Can you tell it's a pet peeve?? Lol.

Ok, gonna get back to my Christmas episode of The Office, hope everyone has a good night and hope all my IH'ers are pain free tonight!

<3 & Hugs

Full Moon

I am gonna start howling soon!  Any IH'er (person with intracranial hypertension) knows that full moons are one of the worst times for headaches as well as crummy weather and today is a double dose!  It is rainy and crummy and the wolves are howling as tonight is a full moon.  It is a percocet and phenergan kinda day.  Phenergan is a nausea medication.

I have decided to give this coupon clipping thing a shot, I started watching the extreme coupon shopping on tv, I think it's on TLC, and they save crazy money!!  Since the economy sucks still and I am not working and my butt is permanently planted on the couch or in bed I may as well save some money while doing it, right?

Onto another subject, my little puppy who isn't a puppy anymore but my dogs will forever be puppies, will not leave me alone lately.  He is attached to my hip even more than Lola, and for those of you who know my older dog and have seen her with me know that she is definitely attached to me.  Snickers, who is now 1, lays on my lap and stares at me, it's creepy haha, then when I ignore him for long enough he jumps up at my face and nudges my cheek with his nose, so cute but so annoying because he does it like every 5 minutes!!  Then he does circles in my lap with his tail going 500 miles per hour and wants to play.  So I guess it is cute enough to deal with :)  They are so great on days like this, rainy and crappy so they get extra cudly and curl up on the couch with me.  Plus they can always tell when I dont feel well.

Here are some pictures of my pups:

Lola who we adopted from a rescue, she had a hard knock life and is now a spoiled princess, she's 4

Snickers who is now 1, he is from an oops litter from my sister's dogs, he is also spoiled rotten

This is our guniea pig Jet, we took him in from a good friend of ours who could no longer keep him, so now he is spoiled with affection and plenty of fresh carrots.

I would adopt every  animal out there if I had the space and money.  Until we have children, these are our kids!

If I win the lottery I am gonna buy a farm and take in as many dogs, cats, small animals and all other animals that need homes, except snakes because I hate them!

So here is a blog about me rambling on about the moon aand animals lol.  Hope you enjoyed, will write more later since I have nothing better to do today.

<3 Love and Hugs <3

Frustration

Ok, my illness, gonna start with filling you in about what this whole IH thing I talk about is...IIH is Idiopathic Intracranial Hypertension.  Idiopathic means they don't know why, Intracranial means inside the skull around the brain and Hypertension means high pressure, so add that together and it means high Cerebrospinal Fluid (CSF) pressure around the brain and that they basically don't know the cause of it or why it's happening.

So basically spinal fluid is squeezing my brain...yeah...ouch...

Anyway, I had a shunt placed in my head on January 31st, a week before that I had a "bolt" placed in my head for 2 days that measured my intracranial pressure (icp).  The VP shunt starts in the top of my head and the tube runs down behind my ear, down my neck under my rib cage and then goes into my tummy near my belly button, all under the skin of course.  Here are some pics of those surgeries.

The above is me with the ICP bolt, attractive with my swollen face and glasses lol

This is the incision on the top of my head

This is where they fed the tube behind my ear

And the belly incision where the inserted the tubinng into my abdomen.

So all was well for about 2 weeks after the shunt was placed and then I started getting this blinding pain under my left ribs they cannot figure out what is going on and I am beyond frustrated because it has happened 3 more times since then and I have had o many CT Scans that I am gonna start glowing soon!!  My doctor suggested to the ER doc that I may need a psych evaluation...really?  Let me grab you by the family jewels and twist and then when you cry out in pain I will suggest that you need a psych evaluation and lets see how he feels about that!  Ugh, doctors can be so egotistical like his shunt placement cannot possibly be causing me any pain because he is perfect!

Anyway, I spoke with his PA and she said it was un-called for and that I will be getting an apology from him...can't wait for that!

Somy frustration is with medical stuff, why is it so hard to figure things out?  Before I was diagnosed with IH I was told it was just my anxiety...why is that the first place that doctors go?  They can't figure it out, so it must be mental...they can never just not know or understand something...it's mental...we are crazy because they don't know something...make sense?  Nope!

So I have decided that my only option in this dilema is to lose the weight I need to in hopes that this IH weight combo is not a myth and that my IH may actually go into remission and I can get this shunt outand voila!  Belly pain problem solved!

Ok, that's enough of the frustration blog for tonight, mor to come, I will update when I have more.  I go to the Nutritionist on Thursday so weight/nutrition update to come then, and I get the stitches out from my latest surgery which was to remove some tubing and re-position the shunt in my abdomen whch obviously worked well...update on the tummy to come soon too.

I do plan on writing about other things as well :)

Stay Tuned! <3 Lov and Hugs <3