Are you REALLY in charge of YOUR health Care?

We see A LOT of doctors for Tyler. The course of action for a child with cerebral palsy really doesn't vary by TOO much. Meaning there are only a few things that you do as treatments.

Treatments depend on the Type of cerebral palsy that you have or are treating so the ones I know about is Spastic diplegia. Which is the type that Tyler has.

Most spastic kids are treated with Botox and then escalate to other things. We have gotten phenol and at some point we will need the next step.

Last time we were in the Physical Rehab docs office she said that they would like to do botox in a few spot on Ty's arms and phenol in his legs. She said " I need to go see what your insurance company will cover before we make a treatment plan."

RED FLAG: If our insurance doesn't cover botox ( which they require an appeal) then we can't treat him with that because our insurance won't cover it.

Even if it is the course of treatment he needs if the insurance decides they don't want to cover it the they don't. That means I am not in control of his health care.

Today, I had my own "insurance" issue.

I was taking the depo lupron shot and the pharmacy that provided it to my docs called last week and was setting up my next dose.

We went in today for that dose. And they were ready to give it to us. Instead we opted to be in control of our health care and between Dallas, our doc and Me we opted to not take he second shot.

When we got home, we got a call from the pharmacy and they said that they weren't going to be sending the second shot because we have a balance on the first shot. I explained that we have the rebate from the makers and it is a 85 dollar rebate leaving the bill 15. They wouldn't send my second shot for 15 dollars. How are they in control of me getting that shot. Is it NOT me and my doctor and MY body?

I was medically in menopause. They needed to keep me that way for another 3 months but if I can't afford it then I guess my body goes back to being sick. Incredibly sick.

It seems that the insurance company and the people who are determining our health care. Even if we are needing that service or not. We seem to just not be able to get it because we can't afford it. So should Tyler NOT be given botox because our insurance doesn't think it is a good idea but his Doctor does?

How are you in control when they are determining what they cover?

PS. according to the pharmacy that provides the shots to my doctor, the shot he had ready and drawn up for me "must have been a sample" and they have no idea where he got something to give me. Which means that the shot was 7 grand and no one knew where it came from. HMMMMM

seems a little odd?

*did you read that.... we didn't get #2 shot*

I feel like I have bloggers block

Have you ever been in that kind of a funk where you are so overwhelmed that you want to write a million things but can't get them all out and even if you did SOOOO many people would think you are not a nice person ( which I generally think I am?)

Oh... you don't feel that way... OPPS.. I am crazy!

Well then, I guess you will all have to wait for all the blogs I wrote while angry, upset and frustrated to be published!

Till then....

A few fun things in the Brown household:

The list of lupron side effects gets longer every day. I am not sure how much longer I can handle them without throwing in the towel and asking that I be all done. Last night while chit chatting with Dallas I was a little "emotional" and the tears were flowing. I noticed that the tears were either flowing MUCH more than I realized or I had the worst runny nose imaginable.

I got up and decided that as it soaked my arm that I needed a tissue.

Yeah. It wasn't boogies and it wasn't tears. My nose had been bleeding. Yep.. not just a little but like GUSHING.. LOTS LOTS. My hands were covered, neck, HAIR, shirt top and face and it was STILL coming. I turned around and looked at Dallas. I think that much blood was a little freaky.

Sad thing.. can't just get it off with a towel so after sitting on the toilet for 15 or so minutes trying to figure out if upright, tipped backwards or packed was the way to go we decided a shower with a packed nose it was.

In the shower it was slowing down but it was STILL running. It was horrible!! Oh and then the puke started. The blood was a little too much and so now it was coming out the mouth. YEP... THANK GOODNESS I was in the shower already.

So after about an hour it stopped. I sat up in bed making sure that it wasn't gonna start again. And off to dream land it was.

In the morning I had a headache and was super dizzy, Dallas let me sleep in and then I slept past the time that I was suppose to be there to get Tyler ready for school but I heard the bus and booked it to get him out the door.

I have really struggled all day. Emotionally I am not doing so hot and am feeling like I am drowning in more ways than one. My body Literally hurts from every joint in my body. I can't handle a few of the things going on around me so I tend to shut down.

I call the pharmacy tomorrow for my next shot. Emotionally I am not sure I can do it another three months. I just don't. But am I ready for the next step either?

P.S. This round I have gotten ever severe side effect. Estrogen supplements have been my friend but I am not thinking they are working ...... :(

I hate endometriosis!

I hate the fertility game.

I feel really alone in the ride.

You remember this?

SERIOUSLY! A little more comfortable. Who are you KIDDING!

And Really doesn't it look like the chicks are gonna kiss... Yeah that is comfortable.

Anyone in their right mind can tell you a landing strip in their undies is not MUCH more comfortable. The only thing more uncomfortable would be an aircraft!

"Crappy!"

A few weeks ago I posted THIS and we went in and got the shot. The dysfunctional stuff has now turned into HELL! Along with some other things that have come up I am really really struggling. Emotionally it is really hard to understand that something you were designed to do doesn't really "work." It is hard to just sit in pain every single day physically and then add an emotional stressor with it. The Depo lupron has taken me for a ride along with all the other things that I was not expecting.

I really should have tried super hard to buy stock in Kotex!

Dear Depo Lupron... I hate you.

It hasn't even been a week and I am not sure if I can last 3 months let alone 6. I got my "first" round of Depo Lupron Monday. I have been nauseous, irritable and moody and emotional. And we haven't really even started yet.

So the back ground you ALLL want to read. When I was 16 we figured out that I was not "right." Most girls had started menstruating in Junior high and even elementary. But I was the lucky one. I was a junior in high school and NOTHING. We went to a doctor in Price and he gave me pills to start my period once a month. Are you kidding me? What girl would really want to HAVE a period so Junior year was kinda a joke. I wasn't going to make myself have a period. Senior year I had one periodically. Freshman year in college we got down to business. I found a doctor up here because when would have a period it was debilitating. I was SICK and couldn't get out of bed. I would throw up, cramp and the works.

So at 18, no real cycle, and debilitating symptoms we found Dr. Anderson. He is the jolliest man in the world. He is like a Santa Clause in a bow tie. Dr. A fixed my problem for the time and gave us some information about endometriosis. He "suspected" at that time that was what was causing my issues.

At 20 I was getting ready to go on a mission. And I was getting sicker. We opted to go the surgery route and my first Laproscopy was performed. He would take out what was there ( and there was stuff there) and sew me up and send me on my way. I felt SO much better.

I was on birth control for a while, then went on my mission. Things were going ok and until I got home the birth control worked. After a while we needed to switch it up a little and we started on continuous birth control. No period until my body broke through the birth control.

When the break through started it wouldn't stop. I was home from my misson a few months and our next step was depo Lupron. So I started my first round EVER. It was not so bad. I had horrible hot flashes. The biggest was the weight gain. But I had no choice and I knew I needed to do this.

I finished my first six months and moved to Logan. Not long the depo lupron wore off and after six months I needed a laproscopy. In October of 04 I had surgery. I was 24. By this time I am getting frustrated about this disease. It makes me sick A LOT.

In April 2005 I get pregnant. Something I was told would probably never happen. We were on NUVA ring as a continuous but some how we still got pregnant. Having a baby helped tremendously and it took about 2 years before I got sick again.

In 2007 we started another round of depo lupron. We would do this for 9 months before finding some large endometriomas, or masses of cells in my body that look like cysts or tumors. They were horrible and pretty painful. I was getting sicker. So April 2008 we did another surgery.

So a small side note: When I had Tyler the circumstances around his emergency delivery made my csection a mess. I had a transverse cut UP my uterus so I have scaring from that, and I also have some major scaring around the bikini cut that had to be redone as well. So my uterus and surrounding area is a big ball of adhesion's and scar tissue.

In the surgery in 2008, they found endometriosis and some really really bad adhesion's. Those adhesion's can be found on my bladder, bowels and my sciatic nerve. It makes my leg go numb. Then adding the regular endometriosis I am not a Happy person a few times a month.

They were able to remove a lot of them. But knowing that with a uterus still there it will always grow back. So we did another round of depo lupron after and I was able survive.

We were off birth control and "trying" to get pregnant for over six months and nothing. But I did have a cyst and another endomtrioma instead. We opted to not keep trying and get help first. Moving back to Utah let us come back to my doctor and he has jumped in full force.

The end of December I started bleeding through my birth control. It went away for a week and then it showed back up with a vengeance. It was not nice. So after 2 weeks of bleeding Dr Anderson didn't give me a choice. He said I have dysfunctional uterine bleeding. He needed to get it stopped and we needed to decide to have a baby or not to.

To get the dysfunctional bleeding to stop I have to take depo lupron. See the trend. Its HORRIBLE.

So that brings us to Monday. The shots came in and we are ready to go for 3 months. The side effects are certainly showing their face. I have less patience with my family. Dallas gets snapped at and since Tyler is not being Tyler I am going crazy.

The side effects are yucky. And for the first 3 weeks of the shot you feel really bad. Like REALLY bad. In fact you kinda feel pregnant. The weight gain comes and the snackies come. And then the hot flashes... Oh joy.

I am not ready to give up my uterus yet. I am not ready to let go of the dream I have. It is such a hard thing sometimes to know you are broken.

But man depo Lupron.. I still hate you!

Almost out of options

The bug hasn't quite left. I had to experience my own version of it and I am about ready to have it GONE! Hopefully Dallas is home free. Ty has been coughing and gagging and this afternoon was just plain crabby. I never know when to "freak" about his sickness. Usually I can stay pretty calm especially when it isn't his shunt but this is getting old.

Therapy was canceled by 2 therapist today so we all decided to go about our business. I have been interviewing with Biomat for phlebotomy which we have decided isn't going to work for me right now. So instead of doing stuff with that I headed to Payson. Dallas was helping his dad set up his apple TV so I took Tyler up there and left.

This is where my blog tittle comes in. We are almost out of options. I am sick. Have been for awhile. Something happened this month that made me REALLLLY sick. Along with just being a girl I have dysfunctional uterine bleeding. Which means they can't get it to stop. Impressive huh. It sucked. Those who have endometriosis know that bleeding equals PAIN and lots of it. I was going nuts. One month of bleeding is NOT my idea of "working."

So how do you get it to stop? Depo lupron. Yep.. a shot. A NASTY shot. it is a BIG shot and it goes in your but and it makes you a hungry, menopausal, hot hormonal lady. This one only last three months so in three months we can re-evaluate our options.

Repeat Ultrasound... and it's a ..............

So I few weeks ago I posted about my ultrasound. Well, we had a repeat one. I had to go in a few weeks ago because I was having some Major pains and the depo lupron was highly recommended. I brought the prescription home and in my naive way I really thought all of this would go away.

Fast forward to today. I go in for an ultrasound ( which I would like to know HOW it is possible to drink a full 32 oz of water that early) Anyway, I go back with the tech and she lubes up my lovely huge battle wound. As she starts hers exam she measures a few things and then moves to the ovaries. The right ovary is looking OK. So the small cyst that was there was gone. I breathed a little deeper. She moved over to the left ovary and there on the screen was a LARGE mass. Last measurement was just over 3 cm and they were wondering if it was because I was ovulating. I am NOT ovulating right now and it is a MASSIVE 5.6 cm. So it is getting bigger. It is getting bigger fast.

So the answer to the problem.... I guess we will be doing depo lupron and some extra estrogen to combat the nasty side effects. And the worst part, because it is so large they have to remove it.( I guess I will join the ranks of ALL the Labrums who have had surgery this year) That makes another "risk factor" since this one is to big to do laproscopically so they get to reopen that horrible scar on my stomach.

We have a presurgical consult in November and we will have to decide what and when to do it. Because of where I work it I don't want to be rushed back to work and I wanted to be healthy to have a weekend with him away. So, when we know when, we will need lots of visitors. We will try and make it in the coldest time of Utah weather so all the moms will want to come and visit.

So that is our blah news for the week... I hope it only gets better from here.

Options that don't really work.. Why is that....

So I have not been feeling well Physically the last few months. I had an ultrasound done a month ago and they found a cyst on my ovary. It was large but not overly large so they are just watching it till the end of the month. I have been so sick this month that we moved up the appointment and went to see what options we would have. Let me tell you... they aren't really great ones. All.... ALL include mood swings, sickness and just overall blah ness!!!

Here are the three options... Medicinal menopause with a shot called depo lupron. It gives you hot flashes, mood swings and all that fun stuff that you don't want to do unless you are forced to. Sounds like fun huh!!

Second option... Have a baby. While this might sound ok to others... need I remind you of a one pound handsome little man and just how well that worked. Will it happen again? We have no idea so now on is pushing that. Not to mention how sick I actually get on that. I pee constantly, I puke all the time ( ask the spaghetti factory!!) and I a MOODY!! I don't feel well and that is for at least six months.... Then you have the what happens if you have another preemie to deal with... I can't imagine putting ANOTHER child through that.

3.. Pain management. We are all ready doing that and I a moody, sick and don't feel well.

Oh there is a 4th but finding someone to do it is next to impossible. 1) remove my "plumbing" which isn't and option if we want 1 more baby AND finding a doc to do it on someone under 30 is next to impossible. 2) laproscopy, which I have done before and would do in a heartbeat But it causes more problems when wanting to have a baby. No one would do surgery with my history and the scarring on my uterus all ready.

Nice options huh. I think we are going with the shots but I am kinda down about them. I don't want to have to go through menopause. I gain weight, I am hot ( something I have plenty of in Arizona.) and I am moody.

Why does it suck to be a girl!!!?!!!!