Sunday, April 26, 2009

The Waterfall

Lately, I have been having an extremely hard time getting sleep. I had trouble before, but, in the last month or so...I have not been able to sleep before 4 o'clock in the morning.

One reason is that I hurt. I can't lie on my stomach, sides, or my back. So, I try to get into whatever position that has the least pain. I was in the ER the 2 weekends prior to this and was admitted into one. I will write a more technical piece about all of this later.

Another reason I have had a hard time sleeping is due to fear. I might have written about this before. I want to share something personal that happened to me about a week ago. I believe this was an answer to my fear. You can believe it or not. I believe this was real with my whole heart.

I dreamed of this beautiful Paradise and I had been there before in my dreams because I have used this image when I meditate to try and control my pain.

This dream was different. I could smell the smells, I could touch the flowers, and I could see everything in vivid detail. This dream, I saw myself in a long white gown, it had dirt all over it, my feet were dirty, my hair was matted and I was headed to this beautiful Waterfall. I walked on the rocks to get closer, the water was so cold. Everything was so beautiful. The smell from the flowers were overpowering.

As I moved closer to the Waterfall, I could see a figure that looked to be in the middle of this masterpiece of rushing water. I started to feel the splashing of the waterfall mist on my face. Clarity started to happen, I saw a man with a long white gown in the middle of the waterfall, yet he was completely dry.

I recognized him. I fell to his feet and I cried uncontrollably. I told him that I was not ready go yet. It was as if I had an out of body experience. I was completely drenched from the waterfall. I saw my body and my gown become completely cleared from the dirt that I had all over me. It was like dark blood or dirt going out of my body and letting the stream take all of the impurity away.

I felt a hand on top of my head and the voice sound so familiar. He said to me "My child, it is not your time" As I looked up, there was only light where I believe God was standing.

I stood up and my gown and hair were drenched, yet, cleared of the dirt.

At the moment, I woke up.

When I woke up, (this really happened) Blake was calling out my name really loud and shaking me to wake up. He was home this day. He took the children to school and when he came back, I obviously was having a severe sugar low. I was out of it for what seems like a long time. Blake was scared that he couldn't wake me up. He said that it scared him so badly. I told him about my dream. He said "this gives me chills, because you were out of it and I did everything that I could to wake you up and you went weren't here"

I believe with all of my being that I had one of those coma's that happen with severe hypoglycemia and while I had no idea what was happening to me, Blake was on the other side trying to do everything that he could to wake me up.

He keeps showing me signs that it is not my time and that I have great things to do. I am no longer fearful of dying...because it was so serene and amazing. I just am terrified to leave my family. I am not going to worry about that one right now. Because I have to focus on healing. This is happening at a turtle's pace. I know God has a sense of humor, because he knows I am impatient, Type A, go getter gal. So, to be basically shut down and doing it His way has been hard. But, I have surrendered it all to Him. I pray for these doctors in the next couple of days and my safety up there as well as my family back home. Thank you all for SOOOO much you have done...

"Never give up...never ever give up" Jimmy V

Friday, April 10, 2009

“Perhaps our eyes need to be washed by our tears once in a while, so that we can see Life with a clearer view "

I used to believe that tears were a sign of weakness. I remember being a kid and if (no..when) I got picked on..sometimes, I couldn't hold back the tears. I would get called a "cry baby". I hated that. I still get angry at myself for crying. Because I seem to cry at inappropriate times. Like, when I am angry...I get so angry that tears come down my face, which only makes me angrier. Or cry over something small that someone said that in the scheme of things are so small. But, the big things..somehow, I don't know how to cry. I just get quiet. I am learning that crying is ok. That crying is truly a cleansing of the soul. And I am starting to take the advice that I give to our children. I tell them all the time, that it is ok to cry. That tears are just a way to wash out the bad. So, I am learning to take my own advice. I still cry at inappropriate what if i got wired a little differently than the rest :)

But, I cried this morning for many many different reasons. I woke up and knew that my sister and my nephew were leaving today to go back to Florida. She did so much for us and she says that she didn't. How wrong she was. Just being able to talk things out and not having to worry about saying the wrong thing or doing the wrong thing. I was able to just be me. It was hard lying down on the couch and seeing her work circles around me. But, she kept reminding me that is what she came up here for. My nephew played with our son and they had the best time. She was like a comfort blanket this week. Then, my other sister came over to say good bye to Charlene (my FL sis) and then my brother came over. Having us all together even if it was for a brief time filled my heart with so much joy. Each one of us is extremely different from the other, but, yet in many ways...we are alike. We have this bond that really no one can break. We can all fight and hiss and carry on. But, we all come back together. We are not only siblings, but we are best friends. Not many people get to say that.

I stood in my front lawn and watched Charlene and Charlie leave for Florida, my brother left to go back to work, and my other sister took our son to lunch. I held back the tears until everyone drove away. The tears are full of gratitude, joy and much love for these 3 people who God so kindly blessed me with to call my brother and sisters.

I cried because an angel secretly talked to the YMCA and they invited our girls to join their track out camp free of charge. Everyday, they are happy..they are playing with their friends. It brings me so much joy because I know that they are happy and not so worried about me. They need to be kids. They don't need to be asking me which scan do I have to get next "Is it the CT scan Mom, you know...the donut hole one?, or is it the MRI know Mom...the long tube? or is it a PET scan like Pa has to have done?" Kids that young should not have to have that as part of their life, but, yet...that is our reality no matter how much I try to keep things from them. They hear.

Today, they were invited on a day long play date. That is so huge for me and for them. I am overwhelmed.

This morning, the FedEx truck came and the kids ran to the door to see what was in this box. My dear friend Greg in Nashville had sent me many CD's that were soothing and healing, and just beautiful. My sisters and I hovered all around them...they all want ed these CD's. I think all of us are dying for soothing music!

My tears are of joy, gratitude and a touch of sadness seeing them leave. And tomorrow, is another amazing gift. It is too much for me sometimes, because I don't always feel worthy of the help, or the gifts. Two of my best college friends are sending me to get my hair, nails and toes done. I think I will be in utter shock. Just like this week, the church brought someone over to clean our house.

I am overcome with humbleness. And tears are my way of releasing so much that I have inside. And you know, that is ok. I don't need someone to give me permission or worry what others will think. I just have to remind myself that it is not is strength for me to let the water flow out of my eyes.

New Medical Updates

I have posted several updates as to what is happening with the next steps for my Health "odyssey". I wrote it in 3 segments as there is a lot information.

Thank you all for all of your prayers and love and EVERYTHING! I am lucky!!!!

Monday, April 6, 2009

The Kindness of Others

I will write more later as to everything that has gone on. I am trying to let so many people know how much we appreciate them individually, but, it takes me a long time to get thoughts out sometimes. So, for right now...I am thanking all of you!

I have to say that I (we) are so overwhelmed and humbled at what people have done for us. Our church has going over and beyond what anyone needs to do. Friends from everywhere have done amazing things, My brother and sister who live here...all that they have done for my children. My other sister from Florida is driving all the way up from Florida to be with me and the kids this week to help me put some sort of order back in my life. My parents....OMG.....they have done everything for us. My in-laws who live far away have been there for me too. I am so so blessed to have in-laws like I do. It is a dream not many people get to have. My friends...oh my...I don't even know where to start with my gratefulness. My neighbors have shown me so much kindness and some don't even know me. Mothers from our children's school, helping us with play dates. Not to mention an Angel that talked to the YMCA (without us knowing) and got our children into camp during track out. And my FB friends....Good gosh....I never knew what a tremendous group of people that I have met.

I can go on and on.. kindness comes in so many forms.... prayer, a smile, something that makes me laugh, a book of encouragement, letting me sob on the other end of the line, let me vent..then I am done. Accepting me for me.. That means so much!!! The other amazing acts of kindness is just as amazing, the food, the help with the house. My two closest friends are getting my hair done for me. Sounds so vain, right? Not for me. I have lost a lot of hair, it is brittle, and I am embarrassed. For women, just having your hair and nails done means soooo much.

And Lorien, a dear person, friend who brought our son and us together...thank you for what you have done. It is unreal. Thank you.

What I am saying is...Thank you to so many. God has blessed me and my family beyond measure. And this is something that I want to pass on to you.... no matter if your problem seems small or it feels I always say a Hurricane is a Hurricane. Nothing is too small.

Learn how to raise your hand and say "Help" and let go of your pride and your embarrassment, or whatever it is and let go. There are so many people out there that want to be helped. This is an area I am still working on. And I realize that i can help others to the best of my ability. An old friend told me that "here is my capacity to be able to help. I am on the road a lot, and I can talk on the phone or you can come over here and cry on my shoulder" THAT was huge for me. Because, it showed me the same. I automatically think that I cannot do anything for anyone. But, I can. I let them know what my capacity is and help in that way.

Pay it forward...Pay it forward....

P.S. I will do my best to thank you when I accept my Academy Award one day. are crazy if you think I am giving up on my dreams. :)

Saturday, April 4, 2009

Emergency Room Nightmare

Emergency Room nightmare is what tonight (rather last night, now that it is 2 am) was. Hubby has been out of town all week and his plane was delayed. I felt so bad for him.

My dad was following the ambulance that I was in. Did you know my Dad is an amputee, just had quadruple bypass, and is a survivor of a rare cancer that has a less than 10% survival rate? He is like the energizer bunny...he keeps on going. He is good with asking the doctors direct questions. He came to be with me since my husband was out of town.

We get there and it is like a scene straight from the hit show ER. People were lined up in the hallway and I became one of them. I can't imagine how bad it was for the people waiting out in the waiting room. They must have been there for hours. For as long as I was there, no bed opened up.

So, they did all the work up and everything right there in the hallway. I am doubled over in pain, even though I got a shot in the ambulance of some sort of cocktail. ( was not Rum and coke :)

My doctor finally comes to see me and is rather inpatient to hear why I was there. I showed him my cath bag which was full of blood. They took me to CT to examine my kidneys. I have to remember that they are just there to make sure you don't die. Anything above that, they can't deal with people. The CT scan showed no obstruction or hemorrhaging.

My husband made it home safely and despite my best efforts to tell him to go home and sleep. He has been working so hard and needed rest. But, he surprised me at the hospital and that was the best gift ever!

The doctor was all confused that I was at The Cleveland Clinic and had a Urologist there and then had a Urologist here too, He seemed very flustered and said quote "You are too complex of a patient, so you just follow up with your urologist" And off he went. Once again, leaving me feeling like I always do when I have to go to the ER...and that is having no faith in medicine whatsoever.

I just put my face in my hands and cried. Mainly because I am sick to death of being sick. I don't know what I am supposed to do in these situations. I mean where else would you go if you have knife like pains in your kidneys and bladder and your stomach is so distended. And worse, you are bleeding terribly. Where do you go? Every literature that I have read insists you go to the ER.

The Dr. told me "Oh, a drop or two of blood from the bladder will make it look worse than it really will just turn it to a pinkish color." Even my husband chimed in and said "No, it is the color of that blood that is coming from her arm". AND not to mention that my Cath bag is completely Red. Sorry if that was TMI for you. They make me feel like I am some sort of idiot or something that I don't know what is going on. They can't be bothered.

It just leaves me even more jaded about doctors and especially the ER. I seem to be in this perpetual waiting and waiting and getting test results back which makes them to have to continue to do more specialized testing and more waiting. Of course, I care about the long term problems that I have that are going on. I recognize that will take sometime to get the answers back. However, in the short is a nightmare. The low blood sugar that drops out of nowhere to (in the 30's) which is in coma time. My kidneys and bladder are in so much pain and it is unreal to think that no one here is going to do a lot about it. It is back to business as usual...get sent to this doctor, that doctor and no one is talking to each other.

I am at a complete loss as to what to do next. I was on the phone with Cleveland Clinic last night and they were more than accommodating to help me out with the ER in NC.

I am doing any and everything to keep the faith. I am blessed in so many ways that I can't believe how lucky I am. Sick or no sick....I am lucky and blessed to have amazing friends and family!

The emotional side of all of this Medical jargon

I definitely can say that I have had my ups and downs. Some of you experienced my downs by listening to me crying or writing crazy stuff. Trust me, when you have been as ill this long and you still don't know where you are headed....anger and frustration comes in. But, it didn't take me long to get out of that pity party.

I am going to write about the amazing people who touched my life at the Clinic one day. I mean, strangers encouraged me when it was them who had been through complete hell. But, they said to me what I even say on my own blog. Is that we all have our own hurricane to battle. A hurricane is a hurricane. I will write on that. Amazing, resilient people who gave me so much hope.

I was thrilled to be home and see our children. They have been my bright spot. Watching their smiles, and their antics make my heart feel better. Blake works around the clock to take care of the kids, work, and then after they go to bed, he works until all hours of the morning.

He is burning the candle at both ends. I cannot wait to get back to any kind of normalcy to take away a lot of his stress.

I am learning a very hard lesson. I fully believe God is breaking me down in this area. I have a hard time asking for help, and I hold things in forever, and ever and ever. But, I am getting broken in that area. So, Blake and I have reached out. We have been overwhelmed by our church and our neighbors response. Parents of our children.... They have done so much for me. My parents, sisters and brother have done so much. Friends came down from all directions. I have been in total disbelief. We get questions all the time about what exactly people can they do for us. The prideful part of me takes over and says "I am all good", but, yet...I can barely move and am in pain. If someone comes to the door or calls, I immediately act like everything is ok. I think I am afraid of people seeing me weak. I am also embarrassed if the truth be told. So much of my hair has come out in masses. I keep it in a ponytail and because of what is happening with my bladder being damaged...I wear baggy pants so it won't hurt my stomach. I have this lovely Cath. bag that I have to carry around. My skin is a mess and I am so sickly pale. So, I am embarrassed to see anyone.

But, that is where my pride is getting me into trouble. I shut out people who really want to be a part of helping me get back onto my feet.

So, I have finally told people what we need....the basics... Food (gift certificates to anywhere), A MAJOR need is someone to come in and clean our house. It is horrible! And I am very limited to what I can do. And that alone is one of the largest stressors we have. They have gift certificates for that too. And I reached out and asked for playdates for our children. And an angel swooped down and called the YMCA and got them into camp while they are tracked out without us ever knowing what was going on. We never could have afforded that. We are SOOO blessed. My older parents have been doing so much as other members of the family and this helps them too to not have to babysit all the time. My brother is hanging out with our little guy and he is in heaven!!! This makes things so much better for me. I worry all the time about the children (and Blake) and what people are doing for our family, helps in more ways than anyone can imagine.

When I can sell enough on e-bay...I am going to Spa it up with Spa treatments. Sounds sooooo superficial, I know. But, to escape for a little bit and feel pretty for just a moment in time would do wonders. I am dying for a facial. All of the stuff that I have gone through has really made my skin a mess. Need I say anything about my hair. I would give the world to have my hair done and have a makeover. It sounds vain, I know. But, honestly...I am sick and tired of being sick and tired. I am so used to being sick and in pain that I have not taken care of myself. One of the things they told me in the hospital was to do any and everything to reduce stress. Do something for myself, get dressed in the morning...get out of sweat pants. Wear will make you feel better, even when you are hurting. I would love to get new clothes, I have nothing that I can wear anymore. It all sounds so good...but, I haven't gotten there yet. And the spa and hair and clothes is a dream right now. Can we say "broke" after all this medical stuff.

The one big wish I have is to find a way to give back to my husband and to get him out and have fun with his friends, laugh again. Send them golfing....anything. He is the one that needs the pampering. Seriously...he works around the clock for us. I have no idea where he is finding the energy. It has blown my mind. I want to find a way to repay him for all he has done.

And our children, the generosity of our church, and their school has really has made their life so great. They are going on field trips, and playdates. I prayed for that so that they were not surrounded by sickness all the time. Same for my parents....I wished I could do anything for them so that they could have a break and take time out for themselves.

I know I am unable to do all of these things. But, one day...I will find a way to pay it forward and lift my husband and kids up. I pray for that day.

Since it will be a while until the exact immune disease is determined and that cancer is ruled out...I am getting myself into Physical Therapy and getting my legs and body strong again. It will be hard to get my core back since I have a lot of muscles torn in the stomach region. But, the doctors are sending me to PT and I pray that gets me stronger. I am dreaming of the day that I drive again. It is the small things that we take for granted.

I am sorry to everyone for not being in touch like I should. Most of the time, it is hard to focus on writing, let alone reading. Talking on the phone is hard. It is not a cop is true. I am getting better about the writing part. That is my lifeline and to struggle with that has taken a toll on my psyche.

Sure, I have my sad days...but, I haven't given up on this fight. Not for one minute. There is so much in this life that I want to do. So many dreams that I plan on accomplishing. So many friends to get back together with. Writing articles, a book and screenplays IS going to happen. It is taking longer than i want. But, I am starting to get that fighting spirit back. I have so many things to write about....about people and their stories who have completely touched my heart and have never ever met them.

Physically, I can handle whatever the diagnosis may be. I just want to know what I am fighting against. I know I am Vitamin deficient and that is easy to fix. Infusions. The rest, well, when God is ready...He will reveal what I am fighting and give me the strength to fight it.

We are going to have to move in the middle of all this chaos. We rent right now and our landlords have stopped paying their mortgage. And our Management Company has been a nightmare to deal with. We are expecting a note at any point asking us to move since they are going into foreclosure. So, we have had to start looking at houses. I will be putting out a HUGE SOS when that happens to help us get rid of so much junk. Our next house, I want to be a minimalist. I want life to be simpler. Back to the basics. I want a Zen home. I desperately need it, and so do our children. I will miss our amazing neighbors. But, it wouldn't be like we were moving very far. So, pray for us about the house situation...especially while we are going through this. The timing could not be any worse. Like I said, our Management Company is not very cooperative. Especially while we were gone and they had a contractor come in and I had a 100.00 stolen and our cat was shut in our childrens room and lets just say he used her room as his potty.. No fault of his. The Management Company said it was our fault. This is becoming a nightmare and it is NOT falling under the category of de-stressing. We ask for prayers for strength to endure, to be loving towards each other, and we find the right house. My other prayer is to get back in touch with friends and stay in touch and find ways to help each of you to the best of my capacity. We need our friends really bad right now. Listening to others helps me tremendously. It gets my mind off of what is going on in my own world.

As usual, I wrote too much and your eyes are bleeding. There was so much to catch up on.

I hope you all are well. thank you for everything and forgive me if I have not called or been in touch. It is nothing personal...I am just trying to pull myself up off the ground. You are all in our heart and prayers.


Thursday, April 2, 2009

Health Update...wished I could say "April Fools"...but, it is not.

I haven't written in a while, nor called anyone. Several reasons...I am just shut down. So much information to digest and then I have been in pain and it is really hard to concentrate.

I will start off with the technical end of things...the medical doctors from Cleveland Clinic. The Neurologist who is the leading doctor in MS got back our final tests. It is not MS. Great news!! Then came all the abnormal tests and I still don't know what it all means. Two of several tests were not normal and the combination of the two tests could suggest called Mitochondrial Disease. There are various types of diseases. He said he will be in contact with the doctor who is the main person for this disease. It is complicated...but, it comes down to the cells in my body. The outer layer of the cell is healthy and the inside of my cells are dying. He calls them the "power pack" which is what gives me all sorts of energy and this disease will eventually take that away and it is a nasty disease. PLEASE PRAY that I do not have it.

Secondly, I showed positive for Microsomal Antibody. The high end of the range is a 5. I was 88. That antibody relates to Immune Thyroid condition. That part I don't understand because I now have my Thyroid under control. I used to have Hyperthyroid and Graves Disease and it went into remission. So, I have had to wait for the Endocrinologist to come back to the Cleveland Clinic so that I can talk to her about what all this means to me. See, that particular Neurologist is now out of the picture, because he is strictly MS. But, he is going to consult with the Doctor who heads up Mitochondrial Diseases. The endocrinologist now will handle the Immune Thyroid Disease. Then, the other test that came back abnormal was something called Methylmalonic Acid. That one was really high. He said since my B12 was above average...he didn't worry about it. Had it been low, then it would be indicative of a small stroke along the way. I asked the Internist who also showed me my B12 being really high and asked how that was possible. Because I have to get b12 shots every 3 months and I had not had one in 9 months. He said that it will go really high when you have an infection in your body. Well, I had a raging UTI/Kidney infection. At the time, I did not know I had an abscess in my tooth. I truly thought it was a part of my migraine and knew that my tooth hurt some. But, had no idea that I had an abscess until I got home.

Then, comes the dreaded "C" word. It was all so clinical. I was talking about it like I was talking about a Project or something. The next steps are looking for cancer. He says if we find it, it will be hidden or within the blood/cells. I have to have a liver biopsy done, because the one or two cysts that I had on my liver last year, has turned into multiple cysts. So, I will have a biopsy. I have to have a Mammogram, and then they are going to do CT scans on my chest, abdomen and pelvis looking for tumors. I have a feeling they will not find tumors. And as I mentioned, blood tests will be run.

I have been on antibiotics for about 5 or more weeks now. Because of so many infections. I think antibiotics are the devil!! They kill your stomach and kill all the good flora (stuff) in your stomach and make it hard to get your immune system back up. I had the root canal last week and at the same time, I had another bladder/kidney problem. I have to selfcatheterize everyday. And (don't read this part if you get grossed out easily) it was becoming extremely painful. I was bleeding really bad. My kidneys were killing me and my bladder was so full that I looked like I am in my 9 month of pregnancy. Blake had to take me to the hospital because the bleeding would not stop. They had to put a permanent catheter in. Somehow, the antibiotics are not working nor is the catheter. My kidneys still are so painful and my bladder/stomach area is HUGE. I will be calling my urologist in the AM. I have a lot of pain walking, so, I try to be as still as possible. Blake is traveling, so, our whole family is at my parents house in their condo. So, that is interesting. They did not want me staying home alone since my blood sugar dropped to the 30's and that is coma/death area.

That is a ton, I know. I will write a seperate email on how this is affecting me (us)emotionally.