Sunday, June 21, 2009

Happy Daddy's Day!!

So much focus is usually on Mother's Day. I get that, I am a Mother of Three. However, I want to talk about my husband. And I want to talk to other men out there too.

Let me say this right here and now....any guy can be a SD (Sperm Donor is what I politely say). Sex Ed 101 taught us that somewhere back in the day. But, the difference is....It takes a MAN to be a Daddy. You are not a daddy because you have the same blood running through your veins as that child. You are not a daddy even if you don't share the same DNA, and you live in the same house. You can call yourself a Father all day long. I want to share with you what the difference is to be a Father vs. a Daddy. You don't need me to explain the SD category. Self explanatory.

Becoming a Father is easy in my eyes. You may or may not watch the woman carry a child in her stomach for 9 months. And for those of you who put that baby there and were never around and left her high and dry. Please don't ever utter the words "Father" or "Daddy". You are a sperm donor. This is not bitterness. This is real life. You do not get that privilege.

You can be a Father by being by their side during labor. You go back to work, and some men are still stuck in the 50's and believe that the woman stays home in bare feet and makes sure the house, the baby, the garden, the everything is done by the time you get home and then look smokin' hot all at the same time. You play with the baby, child or say "wassup" to your teenager (because frankly, you have no idea what else to say) Then after about 15 minutes, it is time for you to rest. You are there when you can for important events, IF the work schedule works for you. When you do not know who your child is but, in today's standards you helped "raise" them by financially by buying their food, clothes, tuition, etc. and your nuclear family lives under the same house. You still have the right to call yourself a Father. No judgements, that is how you either learned your role or chose that role.

Here is when you earn your "Daddy" wings. When your child is not of your exact DNA. However, the blood that beats in your heart, the blood beats for that child. When your child is up until 4 am throwing up everywhere and you hold your hands out for your child to throw up in. When your child has fallen down on the ground and has a nasty "boo boo". You don't even think about asking anyone else. You scoop your child up and fix the boo boo and put a Band-Aid on. You wipe their tears and tell them not to worry that "Daddy" is there.

Being a Daddy means you want to know your child. You want to know everything. You feel their pain, you feel their joy, your heart is full everyday for that child. You would lay down your life for that young baby, child, or teenager. You pray for them, you ask the Lord to watch over them every single day of their life. You help pick out their clothes if they want you too. Some men are color blind (no names mentioned...:) But, they TRIED. Do you see the difference? THEY TRY. As heavy as your schedule was, you would do whatever it took to make that baseball game. Or make sure if you have a girl that when her favorite movie comes take her out. (I know, I hate some of those movies too. ) BUT....the time you invested and the simple act of wanting to spend one on one time with that child will reap tremendous benefits.

Some men say "I am their step-dad" or "Foster Dad" or "Adoptive Dad" or the Dad figure in that childs life. Ok,...there are rules to this. You can only call yourself a fill in the blank-DAD if you follow the DADDY rules. If not, you are a fill in the blank-father if you help provide for that child. If you do none of the above. You sir, are just a man in that childs life. You don't get to escape the rules. You CHOOSE.

I need to say this loud and clear. Just because you and the child share the same DNA....THAT DOES NOT MAKE YOU A DADDY. You are in one of the two other categories. You CHOOSE to be a DADDY. The same blood running through your veins does not give you that coat of armor. You earn it. I think you heard me on that one.

By being a show respect for the woman who carried that child for you and you chose to be with. If you are can still be a great daddy. I know a ton of them. Do not disrespect the other person involved in the creation of this gift from God. Because when you do, that child is a part of that DNA and it hurts them to the core. (This goes for the moms too..don't talk about your ex in a bad way in front of your child) Do what you need to do...not in front of your child. Show respect. That is a Dad. Teach your son how to respect a woman. Teach your girls about having high standards. They are watching you. If you disrespect someone, the boys will do that to others and the girls will assume that is what is supposed to happen to them. DON'T DO IT. They will carry it all the way to adult hood. Don't make that child carry that burden. Be a Dad. An involved one.

Men, it is time to think about some things. It is incredibly easy to make a baby. Life is about choices. When a child enters this world, they have a destiny. They are not necessarrily destined to be with you. That is how I believe. In my situation with my children, God chose their Daddy. To wear the badge of Daddy is an honor. Something every man on this earth should strive to be.

Some men I know have never had children. Do you know that you can be a positive influence in a childs life, especially when their Father or SD isn't around? Look around for opportunities to mentor these amazing young boys, soon to be men. There are many associations that have mentoring programs. You as a man have the power to affect the course of a childs life. You were not given that power for evil, but, for good. It is an armor, it is the highest armor of steel that you could ever, ever wear. Wear it with dignity.

Many of my friends never knew their father. Some never had a male presence in their home. Some did and it was horrible. I see a lot of divorced parents that the men go out of their way to get to know their former significant other partner. High five to you!! Seriously, because if you are man enough to allow another man to help raise your child...that is awesome. It does not mean you all have to barbeque at each others house every week. But, keeping the peace for the child and there is the word RESPECT again. RESPECT your former partners choice. Being a good Dad is making sure you know what is going on. That child trusts you enough to tell you if something is going wrong. Respect and Trust and are so fragile. It is so hard to get and so very easy to lose.

Father's, and SD (sperm donors)....step the right thing. It is never too late.

To my husband, you have been the most amazing Daddy to our three children. Your heart beats for them every single day. Your eyes light up when they walk in the room. They look at you as their hero. You pay attention to what each one likes. You are sensitive to the fact when one child feels left out. Your destiny was to be a Daddy. My goodness, I have never seen anything quite like it. It is a gift that our children will carry with them for the rest of their lives. Thank you for being my partner in this life to raise our children to love, to respect, to honor, and to grow into amazing women and man. God destined for you to be their Daddy. Thank you for choosing to be more than a father, but, a dad.... a dad who lives for our children. The blood does not have to be directly from you. God put their blood in you when you chose to be their Dad. It runs through the course of your veins. That my sweet husband is what a Daddy is all about.

None of us are perfect. Try...that is all you have to do is try.

Children need to know that they are special in a healthy way. They need love, food, sunshine, fun, and above all....they need you. They don't care about the stuff..(of course they tell you they do!!) Deep down..that is not what will make them into the human beings they are destined to be. Be a Dad....and be damn proud of it!!! Happy Daddy's Day!!!!

Sunday, June 14, 2009

Get up and walk in the eye of a Hurricane

After being in the hospital for most of the week and coming home and turning around going back in. I came home last night.

You know what the best thing about coming home besides the obvious of being with my children and husband. Well, it is the small things. The smell of my home, my comfortable bed, my pillows, my shower, my dog who is slobbery and a cat who is the size of real life cheetah. No matter how messy the house is our home. I didn't care if it looked like a hurricane hit it. We are in the process of packing for our move. It is home. And I am loved here.

We are in the eye of the Hurricane right now. But, today, this Sunday morning, no matter how I is the baby steps. And that is getting up, getting dressed and getting out into the sun. I cannot tell you what will happen in the next second or minute. Who can? But, slowly...I have to find a way to get up from the boxing ring that I have lived in now for so long and grab on to the side of the ropes and put my gloves back on. Regardless of how bloody or how painful it is...

You always have to get matter what and put your boxing gloves on. You might be weak. But, the weak become mighty. I will be mighty again.

Life has to go on.

Saturday, June 13, 2009

Continuation of this week in the hospital and ER

Here in lies why I am so bitter and jaded against the medical world. For the clear exception of a few of my doctors . My Primary Care, OB, and Gastro have been my strongest advocates. However, what I have going on is way beyond what they can do.

I might have mentioned that when I was at the Cleveland Clinic. There was a Gastro there that hooked on the fact that he wanted me to do this test. He said it is very rare. But, he had to check it out. Because he said that on a wing and a matched so much of what I have. I, of course was thinking "whatever" in my head. Yet, another test.

This test is Porphyria. It is so complicated that I don't remotely understand. They are looking for acute porphria. And of course, only a handful in the ENTIRE country know how to deal with this disease. Only two labs in the country handle the testing. Having this disease is sooooo rare. But, I have always been told that I never fall into the "clinical text book." And guess what? My tests came back this week while in the hospital. But, they were from CC because it takes a long to get back. These were from the Cleveland Clinic. Many of the tests came back abnormal. Here I am again, rare. The doctor in Cleveland called my husband and said that the leading expert in this rare disease wants to take up my case. I am not sure where that doctor is in the world. But, he said it is very compelling that I have it. And there is a cure.

Well, being at the Univ. Hospital this week...they read the results and said " it is so rare, that we don't know what these results say from CC." They decided to ignore Cleveland Clinics findings and wanted to do their own. They discounted CC's test. And said they doubted seriously that I had something so rare. I just shook my head...

My advocate doctor always told me..." Going to different institutions....doctors don't like that and it is a pissing match" Instead of working is quite the opposite. It is all about making sure they proved the other institution wrong. This is not made up. I have been in the hospital long enough to know what is/has happened. So, the Univ. Hospital said this week is "you have Chronic Abdominal pain". I shared with them my thoughts on making a diagnosis while only seeing me for a few short minutes and not looking at me as a total person, if you want to call it that.

That is another Oprah show. Really....I was shocked at myself for saying how I felt/thought with conviction and making sure they knew that if something happened to me because of their negligence that I will leave a letter documenting everything and I pray that the institutions who have put me on and off medicines so abruptly that caused me seizure like epidsodes. They forgot to see if the meds that I was on interfered with each other. I actually went into what they "call the name I can't recall storm" But, it makes a person feel like their skin is on fire, rocking, shaking, everything. NEVER, in my life would I wish that on my worst enemy.
Oh....I will talk about the things that have been so wrong in what has been done over the year or more.

So, who do you believe anymore? The CC doctor has factual information, enough for the leading, if not only doctor in the country to want to take me on. Because it is so rare. Then another institution that don't have their facts yet, but, have told me that it can't possibly be that.

They were only focused on one area of my body that has gone grossly wrong. The Head of GI walked in, we talked for 10 minutes and we have never met and he pronounced a diagnosis. "Chronic Abdominal pain" Putting me yet in another box. They did not care about the Immune Disease that came back so high at CC, nor the really off the chart labs for other things, nor possible cancer...nothing. It was like someone tapped me on the head with a wand after pulling a diagnosis out of a hat and declared it whatever he name he gave me. Which those records follow you everywhere.

As the saga continues, now we have the raging kidney infection undercontrol that a local ER took care of, which the Univ. failed to find and never acknowledged my pain. They called oh so non-chalantly to tell me about my kidney infection. A little too late, I am lying in an ER rocking and wanting to pull my hair out. The Univ. Hospital never said they were sorry for never listening or ignoring what I knew about my body. And here we are with yet another diagnosis that will take even more and more tests.

My mind has changed.....I am going to stop obsessing over the pain and the diagnosis(plural) and move on with my life. I don't know how you do that with extreme pain. But, I know there has to be a way to move on with whatever I have in my body. I have been in complete seclusion the last few days over everything. Too many things to talk about, to deal with.

All I can do is get up and try and put all of this out of my mind and enter the living world..with pain, or diseases or whatever the hell the doctors want to say. If I died tomorrow. I do not want to be remembered for just lying in bed for when it is time for the good Lord to take me.

I need help in getting my fighting spirit back. I pray for it. I pray that you will help me.

Needing to get my own Doctors degree..

No one gave me the memo that in order to be a patient that you needed to have your own doctorate degree. You are responsible for knowing which medicines interact with the other. You are responsible for knowing so much about medical jargon, the unspoken rules, the way it all works. My memo got lost in the mail somewhere. for If you only knew what I have been through with hospitals, doctors, rules, diagnosis, diagnosis taken back, added on. Medicines thrown out me, taken away instantly leaving me in a state of seizure like episodes. Young fellows coming in my hospital room.... not listening to a word that I am saying. That is because the 5 very young fellows and the attending doctor are all doing different things. One is texting the entire time and his phone was ringing off the hook. He was the same guy who came down in the ER to talk to me about being admitted into the hospital. He yawned the whole time and I could clearly tell he was gone. Body was there...but, gone. Then, one is picking his nails, one is writing notes, The attendee's eyes are glassed over from lack of sleep. And he sticks the youngest fellow in front of me and tells me how long it will be before I MIGHT be able to play with my children again. She said it would be hopefully in 2 years. I almost threw up.

I asked why my kidneys were on fire. They said that everything looked clear. The day that I left the hospital, I was bent in half from pain....crying.... no, let me correct that. I was screaming from the pain and the feeling that my skin was coming off of me, fireworks in my head, rocking back and forth. The doctor comes in and tells me that is how my life is going to be for a long time until we can slowly do "bio feedback" on my bladder and colon. I must have looked at him like an exorcist. The nurses were very upset too that they did not give me any pain medicine. Because one told me that she never saw anyone in so much pain and not have any relief.

The doctors felt that any medicine of any sort would interfere with my bowels. I said I understood, but, that my kidneys and my bladder were on fire and I need help. Again, they said everything looked fine.

I was sent home writhing in pain and rocking back and forth. Begging my husband not to leave my side. Because when you are in that kind of think you might legitimatly die. Because that is exactly how I felt at that moment. I made it home and that night as I was thrashing about and having what they call "tics" where you have no control over your facial muscles or hands or arms. My husband held me tight to help me but, I couldn't stop this seizure like episode. I never went to sleep. Maybe for an hour.

The next morning (this past Saturday), I was even worse shape. I did not know that was possible. I literally was on the floor rocking back and forth in a fetal position. I started throwing up bile and blood. My husband was gone and when he called, he got my parents to take me back to the ER. One that is close by.

They said I had a RAGING kidney infection, they treated me with kindess. They listened to me and helped me. It was a small local ER. Because the pain that I was in. Yet, these large insitutions (for the exception of Cleveland Clinic) come in with 10-15 people in any given day and all come through with their scripted words. Their words where of no warmth. No one listened. How could they pass a raging kidney infection? Funny thing is....while I was in the ER the Hospital called and said "oh yea, you have a kidney infection". They could have found that out in the hospital and saved me 4 days of complete hell. I am a number in the big instution. I have much anger and bitterness that I know I have to work through. I am working with someone on that.

I have much to talk about this last week. Will write more later.

Thursday, June 11, 2009

If you were sick, would you rather know you had cancer,or be told that they aren't sure and give you made up diagnosis/

Please forgive me for my emotional blog post today. But, I am devastated.

Most of you will say "Shame on you, people have it much worse". And I couldn't agree with you anymore than that. You are so right. Those that have cancer and terminal illnesses, I am amazed at your strength.

I have said before, that each person has their own "Hurricane" and a Hurricane is a Hurricane.

I have put in this hospital for 3 days, with no pain medicine and really no medicines at all. And the strange test that I received for Pophyuria as a diagnosis....UNC completely discounted it. Said it wasn't the right labs, huh? This is only the GI portions of it. What am I supposed to do about the bladder? the kidney? The 9 month pregnant looking stomach, the black-outs, the fainting, the sugar lows in the 30's that can make you go into a seizure. Or this Immune Disease the Cleveland said I have. All of that is supposed to be dropped? That is what they said to me. That I need to get one diagnosis and work with one doctor.

The diagnosis being Chronic Abdominal Pain Syndrome. I about lost my mind. I let everyone know how I felt including my attending. I told them what they are doing to me is putting a nail in my coffin. Because I KNOW...I KNOW there is more to this. I know my body. I am not some dumb blonde.

They want to know why I felt that way....I told me my lack of faith in medicine anymore. 3 misdiagnosis that could have caused serious damage. I believe in my heart that this is another huge mistake. HUGE. I don't care what they say about only seeing them (UNC) for everything. Because, I am not. I will work with my primary care and Cleveland Clinic.

My doctor says he is looking at me as a whole person and I was very complicated and I needed to cheer up and have a better attitude. I lost any grace that I had left.

I believe that something is really really wrong. Without exagerattion, I believe that this is the end of me. I don't know how many hours, days, or years. But, these incredible mistakes and not working with me on my body....the whole body...that eventually one of the organs is not going to be able to tolerate it anymore.

I have cried all day, and I think about is how damaging this will be for my husband and children if I die of medical error. They will be in therapy forever. What will Blake do?

I am writing a letter that I am putting with my will and letting my family know where it is. I will make sure that they know that I have gone everywhere and tried everything and at my last stop at a Univ....this is what happened, and that I believe that no listening to me on this one will be the death of me. Literally. I would hope that my family would go into a full blown malpractice suit.

I will treat this as a terminal illness and in a few days, I pray that I will get over my extreme anger, betrayal, sadness.....the list keeps going with words. And I will deal with the pain that I have been dealt with. I will follow Gods will and I will love everyone with my whole heart and not leave any un settled baggage. I will bask in the beauty of my children even if I am hurting so bad. I will love my husband wholeheartedly......

Who knows when we are all going to die? I don't...however, I do feel like I know a time frame.

I love you all and thank you for supporting me..... Many Many Many blessings to you all!!


Saturday, June 6, 2009

Letting go..

B.C. (Before Children), I wanted to jump out of airplanes and sky dive, and after that go bungee jumping. I remember someone telling me that they were afraid to jump. I asked "How did you get through it?" They told me " I just had to let go"

Those few words sum up so much in life. "Just let go".

I know for me in this whole process and journey through illness, financial and personal struggles, I have been told to just "let go". At first, I want to scream at the person who said such a cliche! arggggg......

But, lately...I am understanding what that really means to "let go". See, I have always been a Type A, control freak. I need a plan, I need to know what is going to happen next. I need to hold on. You know what? It is maddening! I hate it and I pray everyday to lose that trait about myself.

Lately, I have grown extremely tired of holding on. I am learning piece by piece to let go. The biggest thing has been about moving. I completely believe that all the clutter and chaos in our home has caused much strife and frankly has made us all sick.

With every move..there has always been stress around it. We just throw all of our stuff in a box, there is never any time to go through the "stuff"...we just sweep it into a box and take it from place to place. Stuff that we even brought into the marriage...boxes that we carried around with us after we graduated from school and our parents told us it was time to get all of our old stuff out of their house.

We are having to move as our landlords are getting this house foreclosed on...thus, we...the renters are needing to go. But, we were blessed in finding a beautiful house that is half the size of this and I am THRILLED about it. That means so much has to go out of this house. This time, something is different....We are all letting go. I am amazed at our children willingly letting go of their favorite animals or toys, my husband letting go of our 60 inch screen TV. If you only knew how much he LOVES that thing. And for me....I am like....You want it....take it! We are selling a lot to pay for moving. But, it is more than that. It is about letting go.

Something switched in my head and heart. Since giving my life back to God again...I just laid so much at His feet. I gave up the house, our finances, the utter chaos that is happening, and my health and the rest of our families health....I have let go and letting God. We have given so much away and let so much go that I feel embarrassed that we had sooo much to begin with. It was things we have not seen in years, but, felt we had to hold on to it.

Not anymore, as a family....we are sick of being sick and tired of our stuff holding us hostage. We have so much more to let go in the next few weeks. I am so ready to let go and let others love what we have.

I have so much more to say on Letting Go....but, this is the beginning. You have to start somewhere.......