Monday, January 7, 2013

Not Okay

Sometimes, this thought comes into my head. The thought that I will never, ever, ever again be able to hug my dad and tell him, "I love you." That thought literally makes me sick to my stomach. I suppose that it still doesn't seem like he's really gone forever. It will be 2 years in June, yet, somehow, it hasn't completely sunk in.

It doesn't seem fair that life goes on once you lose someone that you love. It doesn't seem right to celebrate birthdays, Christmases, new years, new births. It feels wrong for the rest of the world to keep going when your own, private world has come to an immediate halt.

Fortunately, unfortunately, however you look at it, life does go on. Your love or grief will not diminish with time. Or mine doesn't. Maybe I don't want to be better, maybe I don't want to feel "okay," because if I do, then I've become "okay" with losing my dad, and "okay" with the fact that he's not here anymore.

I'm not okay. I'm not okay with any of this, and I'm not ready to be. I think I'll refuse to let my father's death sink in, and continue to not feel anything, because whatever I feel, I don't want to feel okay.

Sunday, October 7, 2012

Chunky Hats

So, an old friend of mine has started a business making cute, adorable little (and big, if you'd like one of your own!) hats! It's called Chunky Hats, and if your child has a head, you should check it out.


Made to order crochet hats, starting at $5.00!
Shipping:
1 Item- $3.00
2 Items- $5.00
3+Items-  Free



These are just a few of the cute items for sale:









This one is actually my favorite, and I want matching ones for my son and I.


Chunky Letters - $2.50 Each or 2 for $5
Can be made in any color(s) and letter
Flowers will vary but they will match your choice of colors.
7" Tall
These items are homemade, (made with love!) They could be passed down, passed around.  I think everyone needs to know about these, so spread the word!

Email is: Chunkyhats@aol.com
Facebook Page: www,facebook.com/ChunkyHats

Saturday, June 9, 2012

Support

When you have things happening to your body, it can be hard to understand.  Even after years of having certain syndromes, or diseases, it's tough to really understand the effect it has on your body, and your mind.  Imagine not having these things, and trying to understand.  It's almost impossible.  I am lucky enough to have an amazing mom who drops everything to help me.  She takes me to doctors appointments, she gets me prescriptions, she's shown me how to take my medicine, or injections when I have no idea when I am doing.  She takes me to the ER when necessary, she is just always doing for me, and I can't even express my appreciation.  I have her as a major support in my life, along with a few friends, and family members. 

One big help for me right now, is talking to women that I meet online who have some of the same ailments as I have.  A support system is necessary, and it's hard to find.  I have joined a few pages on Facebook, that have helped a lot, and a few new pages, that so far, seem amazing.  The women (and some men) are empathetic, sympathetic, understanding, informative, and just wonderful.  It doesn't matter that I can't see these people.  It's probably better that they can't see me! (Haha) Their support and understanding gets me through rough days, sometimes.  Days, when no one can really understand or help me, not even those closest to me.  Miserable days when I can't, or don't want to function.  These women help.

So, if you're dealing with an illness or something along the lines, and need support, don't be afraid to look up pages or groups like these! Jump right in, and introduce yourself, it makes a difference in your life!

Fibromyalgia, the new 'F' word

Addisons Disease Awarness

Cushies on Facebook (Cushings Syndrome)

Got Diabetes Insipidus?

Pituitary Tumor Awareness

Pituitary Chat Friends

T1Diabetes

Friday, June 8, 2012

Why I Choose Not to Immunize

You should see the looks that I receive from my doctor, and from my son's teachers and school nurse when I tell them that I refuse to have my son immunized.  Probably very similar to the look you have on your face, right now.

I understand how much of an issue this is, and how difficult making the decision not to immunize is.  I don't advise parents to stop immunizing their children without doing MAJOR research on the subject- more than just asking your family doctors, or pediatricians, who MUST follow the APA’s current (and ever-changing) recommendations.

Another issue is  whether to immunize by two.  Ask a pediatrician why more and more vaccines are being pushed for younger and younger babies.  The answer is simple, and it has nothing to do with what’s best for your child.  The answer is that’s when they have ACCESS to children, they must take advantage of that opportunity—at well-baby checkups.  People come to well-baby checkups, but they don’t show up after the baby is older.


The World Health Organization (WHO) takes credit for eliminating smallpox from the planet as its major coup in the fight against disease.  Yet smallpox disappeared in non-immunizing countries faster than in immunizing countries.  Some link the eradication of smallpox, instead, to improved sanitation and education in hygiene.  This is an example of what you can read about the “other side of the story” with regard to WHO’s claims about the necessity of vaccines.


The U.S. is  the only first-world country to attempt to fully immunize children in infancy.  When Japan quit immunizing children under the age of 2, the national SIDS rate plummeted 80%.  Each member of the V.A. receives six figures from the very pharmaceutical companies  it is  supposed to be the watchdog over.  This is a breach of the V.A.’s charge to guard the public health.  (Ditto the Food and Drug Administration.)   The V.A. is responsible for protecting the health of our children, and the conflict of interest simply can’t be overstated.

 Just to give you an idea of ONE way this conflict of interest manifests itself, the Vaccine Administration considers claims of babies who die or are injured within 48 hours of being vaccinated.   If your baby dies of SIDS 49 hours after she is immunized,  her death  can’t possibly  be linked to the shot, according to the V.A.  Their rules are illogical, not grounded in science, and designed to protect the pharmaceutical industry.   Parents should trust their instincts and their research, not the U.S. Vaccine Administration.  Keep in mind that the published risks don’t include people like the children who died after say, 49 hours after the vaccine is given.

Some researcher says that many reported problems are  a result of immunizing babies with very immature immune systems.   I would worry  less about an immunization for an older child or adult, especially if you could ensure that the vaccine did not contain thimerosol, (contains mercury, mercury cannot be eliminated from the body and is severely dangerous).  Since 2001, with the exception of some influenza (flu) vaccines, thimerosal is not used as a preservative in routine childhood vaccines. Of course, other vaccine additives like formaldehyde are deeply troubling as well and shouldn’t be injected into the human body.

 Big Pharma companies are in a constant race to develop  new vaccines, because the target market is any company’s dream with unlimited profit potential:  it includes every human being on the planet, and the most educated among us (doctors)  are in place to sell the product.  This sales force  also lobbies for laws to take decision-making power away from parents and have stated in their publications that parents should be forced to immunize their children.

As parent's you should trust yourself, because no one has your child's best interest at heart more than you do.  Do your research.  There is such a thing as an Exemption form for immunizations.  Your child's school will have this. They won't offer that information to you, oh no.

Yes, you will have to deal with looks from your doctor, family, friends (who you choose to tell your decisions to) and that might be difficult to deal with, but what's more important? Everyone thinking a certain way about you, or you, knowing the truth, and protecting your child the best way you know how? 

But, let's be honest here, I know that 99% of the people that read this, are not going to do any research, and are going to continue to listen to those guys in the white coats. 

Thursday, May 24, 2012

It's a Wonderful Life

 I'm going to explain a few things, some of you may or may not know much about this part of my life, but it sort of IS my life, now, so I'll explain the best I can, with what little patience I have at the moment.  It might be a little long- winded, because as much as I'd like to explain everything, there's just no way that I could, well not in any way that any one else would be interested.  I'm writing this mostly because I want to remember things, myself, and I don't know how to write about it without sounding like a huge, whiny, cry baby, but whatever.

In the summer of 08', I started having terrible migraines.  I let them go for a long time, because no one seemed to have any answers.  In November 2008, I was still having the migraines about once or twice a month. They usually lasted for about 4 days. The longest one- 6 days. I went to the ER. Saint Vincents. They gave me a cat scan, gave me fluids (since I was SO dehydrated) and meds to take the pain away. Told me that this was menstrual migraines.

In  December 2008: My period stopped. In March of 09' I remember the day- my mom came over to my house with my sister.  We were in the backyard playing catch with N, and my vision was double.  Just like that.

In May 2009, I was still having the migraines, my skin was dry in odd places, my face was broken out (which was really never an issue for me) I was thirsty all the time, my hair was getting unhealthy,

In June 2009, I had another migraine. My vision was getting worse. I was seeing double, blurred and colors! Literally, I could look at a white wall, and see cartoon characters doing things! (they said later, that this was because of the tumor leaking, and that things like that really do happen...tricky brain.) I went to the bathroom to get a drink one time and practically blacked out.

 June 13, 2009: I called my family doctor, told the receptionist my symptoms, and she had me go to the ER. (Hamot) My parents dropped me off around noon or so. I literally waited for about 6 hours before anyone would see me. My mom came back right after I got into a room. A nurse was asking me about everything, I remember telling her about the "cartoon characters" that I was seeing, and the "trippy colors, and shapes" that I was seeing. I really thought she was going to think I was a junkie.

They told me that I might have to get a spinal tap. Apparently, excess fluid in your spine can cause these kinds of migraines, and getting a spinal tap would find out the problem WHILE fixing the problem. I was actually very nervous about this. I could imagine the pain was bad. I got an MRI.

 They ended up checking me into the hospital, I was surprised. I really shouldn't have been, with everything going on with me, but at the time, all of these things didn't seem real.  The next morning, a team of doctors woke me up.  They told me "I have good news and bad news, good news- you won't have to get the spinal tap. Bad news is that you have a pituitary tumor. It's rarely ever cancer...." and I basically drift off then. My thinking was "thank god I don't have to go through the spinal tap..." It was a tumor, and supposedly it was "leaking" or "bleeding," not sure which, I've heard both from doctors. (This left me with permanent blind spots in each eye.)

 I remember calling my mom. I don't even know where she was. Work, maybe. I told her. I don't remember how she reacted. A lot of things are a blur after that.

I do know, that I didn't realize how serious this all was.  Except when my parents would leave, when they left, I got really upset.  And when N left, I was a horrible, horrible wreck.

 June 16,2009: The day of my surgery.

Basically what they did was go through my left nostril, cut out a piece of bone from my skull, and get in there and remove the tumor. Unfortunately most of my pituitary gland went right along with it.
Zip Tie nose. Most of it is all healed, by this point. This is from my second surgery


It was hard for me to walk after surgery. I had physical therapy. They would have me do silly things. And they were difficult. My vision was still bad, so that was part of it, but the surgery did have a great effect on me. I was stuttering, losing track of my sentences right in the middle of them, couldn't walk right... This went on for some time after my surgery as well.

I cried once after my surgery in the hospital. I was doing physical therapy and I just could not walk right. I broke down. It suddenly hit me. Everything. I had a brain tumor, I had it removed, I have no pituitary gland and am on all these medications. I can't talk right, I can't think straight, I can't fucking WALK right. The moment passed.

My life changed pretty drastically, afterwards.   I was at ACL at least 3 or 4 times a week for blood work. I was diagnosed with a few different things- since the Pituitary Gland controls so many different hormones, etc in your body, mine is kind of a train wreck! Thank god for modern medicine.  I am on hormone replacements, now, for the rest of my life.  I'm fine with this, except for the steroids.
Blood work makes me look like a junkie

This is the start of bruising from lab work

Panhypopituitary is the word that just about covers it, I suppose.

I was diagnosed with Hypothyroidism, Diabetes Insipidus, and Adrenal Insufficiency.
For those, I take Synthroid, (or Levothyroxine) DDAVP (Dessmopressin) and Hydrocortisone.





Synthroid, Hydrocortisone, DDAVP This is what my table looks like on any given day.

Finally, last summer, about a ,month after my dad passed away, I was noticing different things.  Earlier in the year, I had experienced migraines, again.  But, after my dad died, no one was feeling great, so I chalked up everything to that.  I was not able to keep anything down.  I was losing weight, rapidly, (wasn't complaining about that!) Then, I started hearing voices.  Literally.  Finally, I went to the ER, and was diagnosed with Diabetes.

Let me clear something up- I was already diagnosed with Diabetes Insipidus, which is "water diabetes." Basically, Salt problems, instead of Sugar.  So, the symptoms mirror each other, but medically, the two are different.

My sugar was up over 600, and I was in the ICU for a few days.  Then, I got an MRI.

The next day, doctors came in and told me that my pituitary tumor had returned. It turned out to be an infection, not a tumor.

I ended up having another surgery a few weeks later. In the Dr's words, he "scooped out the whole area, pituitary, and all." So, the surgery was the same as the first, only this time, the recovery was much easier.  I felt good, afterwards, for the most part.

 So, I was diagnosed with Type 1 Diabetes, because my body does not produce hormones on its own.

Diabetes kit

 Afterwards, I had a pic-line for antibiotics for 2 months.  Home Health Care came to my house twice a week for blood word, and to change the dressing on my line.  Luckily, I was always able to take care of other things, on my own. 
Antibiotics

Pic Line
Most days, I am just tired.  I've literally gained over 100 lbs. from all of it, and the steroids.  Cushings, are the symptoms that I have, if you're very interested. Thankfully, last week, after 3 years, my steroid dose was cut in half!! So, I will be losing weight, thank goodness. Steroids are a BITCH. Fibromyalgia is also a problem. I believe it's a side effect from everything or something, but I doubt we'll ever know the exact start of it. My skin hurts sometimes. My whole body hurts most days.

I complain a lot.  I feel guilty a LOT.  I have a small child that has had to deal with all of this, without totally understanding any of it, or why I feel terrible on any given day.  My family is amazing, and help me in many ways, I can't even describe.  They listen to me bitch and moan, which is huge, because I know that it must be very annoying at times.  It's funny when someone says something about me being "strong." Of course, when you go through things that are tough, it's not like you have any other options.  And I'm about as weak as they come, like I said.  I have decent days, but if I don't push myself, I struggle to get to class, etc.  I hurt a lot.  It's amazing what these hormones control. Sometimes my joints hurt, my muscles are so weak, I can barely lift my son at ALL.  My skin hurts sometimes, which I still find very disturbing, and I don't understand it.  My brain my brain, my brain. Diabetes has sufficiently fried it!  I just called my mother today, after talking to her on the phone, and told her that I forget what we talked about, and I'm not sure what I'm doing right now.  I just needed to check my sugar, and give myself insulin. Things like that happen sometimes.  It's silly.  Silly is the best word, in my opinion, to describe this situation.

I guess I felt the need to explain these things, because I always want to see people, or hang out with people, and most times, I can't, or won't.  Can't, if I don't feel well, and won't, because it's difficult to literally not be recognized by someone that you used to be friends with, simply because you've gained a TON of weight.  I hate seeing people, but I want to so badly.  I always feel the need to apologize for looking so terrible, to people that I haven't seen in a while. It's such a joke.  And there's no way that they could understand.

I am lucky to have awesome friends who I've met online, who have the same illnesses as me, and we talk about things, complain about things, and compare things.  I have a family who laughs at me, which is exactly what I need! We are funny, and sarcastic, and they make fun of me, while I make fun of myself.


Humor really is what gets me through situations, and I couldn't have a more sarcastic family<3

So, some days, when I'm feeling sorry for myself, and posting sad-sacky things on facebook, feel free to tell me to shut the hell up, because it could be worse! Everyone needs those reminders, sometimes, because it's absolutely true! 





Saturday, May 12, 2012

Mother's Day



Tomorrow is Mother's Day.  And, as usual, around this time of year, I am completely broke.  So, I think we are going to have dinner at her house, with my grandma, and I'm going to get her drunk, so that she doesn't realize how lame her children are for not buying much. 
 I did think of some pretty decent mother's day ideas though, for those of you who might be having trouble thinking of ideas, and have been smart enough to save some cash.

  • Take her to a movie
  • I would say "Taker her to dinner," But you know, as well as I do, that every decent restaurant around, will be packed full, and if your moms are anything like mine, she will be miserable, and end up hating you.
  • Cook for her, her favorite dinner
  • Make her breakfast, in bed
  • Take her to get her hair done
  • Go get mani/pedis
  • Help her in her garden, if she's into that type of thing.
  • Get a bunch of pictures of you, and her, or you, and your siblings and make a small memory book.
  • Go to the beach together, and look for beach glass
  • Make her a macaroni necklace, or photo. Hey, she loved it when you were 5, she'll love it, now.

Anyways, I'm sure that lately, my mother has been regretting her decision to give birth to me, but I'm almost 100% sure that abortion at 315 months is illegal in any state that you live in.  (in case she was reconsidering!) 

I love my mom, and grandma, and I don't think I would have much of a life, if they weren't in it. 
Also, I have some amazing aunts, who I do not tell often enough that I love them. 

I am very lucky to have such strong, intelligent, hilarious women in my life. And I love you all.

Friday, May 11, 2012

Mommy Reincarnate: The Truth Hurts

If you know me, at all, you've probably heard or seen my rantings and ravings on my anti-religious views.  However, if you ask me, "Jamie, do you believe in reincarnation?" I'd have to answer, "Yes."

I feel like life after you have a child, is completely different.  It's literally like living two different lives in one lifetime. 

Life before child:

  • Tight, low-rise jeans      
  • Cute, little hoodies
  • Small shirts, big boobs
  • Hair looking cute (most days)
  • Make-up, normally
  • Cute jewelery
  • Loud music
  • Constant Shows (local bands)
  • Constant friends
  • Constant partying
  • Working two jobs
  •  Tanning almost every day, in between said jobs
  • Quitting job, because I didn't have enough time to party
  • Finding a random paycheck from work, because I had so much money coming in, that I didn't realize I hadn't cashed a paycheck.
  • Best friend, Bobbi.  Always with each other.
  • Stayed out all night, slept all day
  • Cute boys
  • Clean house
  • Cleanish room.
  • Always time to read a book
  • Go see a movie whenever I wanted
  • Made random shopping trips, just for something to wear that night
  • Lots of drama between myself and boyfriends
  • Walked to the track every night, to run a few miles, and walk home. 
  • Walked 15 miles with Bobbi, once. From my house to Waldameer
  • Random tattoos
  • Many, many piercings
  • Could drink beer like any one of my male friends. (almost)
  • Fun, fun, fun, and did I mention, fun? 
 Life After Child
  •  Fat jeans. Because lets face it, I ain't skinny. I wish I would have appreciated those skinny(ish) days
  • Over-sized sweatshirts, boobs hidden
  • I get my hair done maybe once a year. Maybe
  • I'm lucky if I actually take the time to wash my hair daily.
  • My jewelery is a medical ID bracelet.  Although, I am about to get a new one, so that's exciting.
  • When I wear make-up to class now, people treat me like they don't recognize me. Are the bags under my eyes THAT bad, you guys?!
  • I don't go to shows, or concerts.
  • I don't even listen to my loud, "crazy" music if N is around. I don't think it's appropriate all the time.
  • I have a few friends, about a hundred  acquaintances.
  • The few friends that I do have, I rarely see outside of school, or in between terms for about 2 days.  My old best friends and I rarely speak. But I love her to death. That won't change.
  • I don't go to bars, often, if at all anymore.  Various reasons.  Mostly I hate all of the Ms. Skinny McSlutty Pants who are always there.  
  • Another reason- don't really like to drink anymore. Scratch that- Don't like HANGOVERS.
  • Two jobs? I am not that motivated. 
  • Too much money? Really?? AH I could just slap my 18-year old self!! 
  • I don't even remember what a sunburn feels like.  I am so pale, I'm almost translucent. 
  • I still don't sleep at night. But if I'm tired, or sleep during the day, I feel like the BIGGEST Ahole.
  • The cutest boy I know is my 5 year old son.
  • But, I actually managed to have one crush within the past few years: My religion teacher at college. Ironically. 
  • Clean house? Clean house? HAHAHAHAHAHAHA..... ETC.
  • I do still make time to read.  It's what keeps me sane, and my brain from becoming complete mush.
  • Every time I go shopping for something decent to wear, I end up buying something cute for N. Because 1. It's usually cheaper than what I'd want. 2. I don't have to stress about trying it on in the fitting room.
  • Have technically been single since I broke up with my first love.  Oh. Still not over that.  Talk about needing to move on.
  • The last time I went to a movie, it was Puss N' Boots.  And I fell asleep.  I was thankful for the nap.
  • I need to exercise more.  I'll leave it at that.
  • I took out all of my piercings, except for my ears as soon as I found out that I was "with child." 
  • Who has money for a tattoo?
  • Who has money for beer?
  • Who has money for fun?