Monday, March 23, 2009

The Article on Invisibility and Ignoring might have been taken the wrong way...

When I wrote that article, it was in no way suggesting that everyone I know has not called me, or written or anything. Or anything that suggests that you haven't been there for me. Quite the contrary. I have gotten a lot of emails apologizing. Lord knows, I did not mean that. There is NOTHING to apologize for. It was really about me learning that we as people (especially me) get so wrapped up in our own lives, in our own Hurricane, and we ignore the world out there and we become invisible. Mainly due to our own self. For me, I wanted to become invisible, so that no one could see the real me, to see me looking sick. I soon became invisible to others because I allowed it. I did it to myself.

We are all consumed, wrapped up, and many are in the middle of our own Hurricanes of gigantic proportions. It becomes next to impossible to go and help a neighbor while they are in a middle of their own Hurricane. Because ours is too overwhelming. My article was more of an observation.

For me, I am going to try and get out of my own misery and look around and do what I can do for someone else. I think a lot of times that I don't have a lot to offer, because I am so limited. And I realize that I can do what other people do for me and helps me. And that is to send out notes to others to let them know I am there. Find encouraging words, let that person know that they are special and that everything is going to be ok. And one day, when I can drive again....I can get out and do things.

But, I believe that I have to stop being invisible and ignore others Hurricanes no matter how much is going on in mine. Most days, I don't feel like picking up the phone. But, it only takes a second to check in on someone even if they don't want to talk about their stuff. Or do what my dearest friend Greg is going for me. We have been friends for 20 years and he knows how much I love silly stuff and we used to crack up over so much that most people didn't find funny. He sends me hilarious videos. And I know that takes just a minute for him to do it. But, for me, when I open them up and soon...I am laughing out loud and my pain falls away. He has no idea that something that might seem small to him is huge to me. Or other friends send out a quick email to let me know they are there. There are no expectations for me to call back right away. Or like my husband...sends a sweet text during the middle of his crazy day. That is what I need to do for others to help me get out of my own storm.
That is really all I was trying to talk about in my article. Not saying people haven't been there for me. God knows, so many have.

But, I am learning how to get past my own craziness and trying to find how to help others stop feeling invisible and reach out as much as I can, even if it is something small and it can do what it has done for me....stop being invisible and it helps more than anyone can know. I hope that makes sense.

Sunday, March 22, 2009

Sunday Morning Tears....changing over to a sunny day....

I woke up this morning and couldn't stop the overwhelming amount of tears. Not sure where they came from, but, it must have been pent up. The truth of the matter is...sometimes I have this dream that I will wake up and the pain will be gone. I had one of those dreams last night. I dreamt of running. Somehow, I was in Central Park in NY and I was chasing our kids and we were flying a kite and we were laughing and laughing. Blake and I were playing touch football (yes, I am about the only girl that loves it) and he tackled me and the kids piled on top and we were all laughing.

So, when i woke up and the first thing that I felt was my face on fire and felt the heart beat in my ears and could hardly touch my face due to the pain. My heart was racing, and my legs throbbed uncontrollably. My back was hurting intensely. I started to cry and was hoping that Blake would not find me this way. He did, and as always, he lovingly held me. I told him my dream and then how I woke up. He said he understood how that must have felt. He reminded me how far that I have come and there were no expectations on me. To give myself a break and stop being so hard on myself.

If I was to be brutally honest....I would tell you that I beat myself up almost everyday. Because I expect to be better. When i am not, i get angry. I feel I am being betrayed by my body. The waiting is killing me. I can handle any diagnosis....but, these tests were so specialized, that it could take another week. Patience in this case is not my virtue. Blake told me that no matter how much worry that I did, and getting upset that whatever is going on is already there. No amount of worry is going to change that. Whatever is there. So, I need to get up and get moving through the pain and enjoy the life that I have. One of my favorite things to do is to write and I have barely done that. So, I vowed to myself that i would write today. Because I can't stand being around myself like this today. :) So, writing brings me back to earth and gets me out of the mire.

The rain is changing to sunshine..... :)

Enjoy this beautiful Sunday!!!!

Sunset at Holden Beach, NC

Saturday, March 21, 2009

Ignoring and Invisibility

Sometimes, when we are in the middle of a Hurricane, some of us pretend it is not happening. Having lived on the coast a lot of my life, I have heard people say "We are going to stay and ride it out, I have lived here forever and it won't touch us".

Others watch from afar from their television sets. They hear about the Hurricane, but, feel no real connection because it is not happening to them. In either case, we ignore it.

Sometimes, we sit and watch the Hurricane surround our home. We hear the howling winds, we hear the house rattle. We peek through the blinds and watch the shingles fall off of our neighbors house, Somehow, we still believe that the Hurricane can't possibly touch our home.

And when the Hurricane does touch our home, we are shocked. We are in denial, or we are angry. Others watching it on TV say " I am so glad that wasn't me...poor things", and then they change the TV to the latest Reality Show.

The thing is, I understand both sides of that. I have always believed that illness (not your common cold) won't touch me and now that it has, I have gone into a lot of denial and especially anger. Anger that I can't control it and anger that I am not back to normal immediately. I have also ignored it for many months, never letting people in and not telling them the full story. And recently, when I have...many have reacted like those that are watching the story of the Hurricane on TV....they hear it, but, ignore it because it is not happening to them...and turn the channel, because "illness is not fun and sexy"

I have not been officially diagnosed with MS and the Neurologist says I have a different disease of my spine...the pain does not hurt any less. It starts with my legs feeling as if they are burning and the electric shocks are what hurts the most, then it travels up my spine making it very hard to walk or to sit comfortably. My head feels as if a time bomb is in it and wants to explode. Sometimes, I sit there and hold my head and rock back and forth. Lets not forget the fact that now I have to catheterize myself everyday (3x a day) because my bladder does not work properly anymore. I am doing everything that I can do to prevent Renal Failure. It leaves my bladder and kidney hurting. There are other things that are happening. But, basically pain is all I know.

I hide the pain a lot. I treat it as if it were an acting job. I work hard on it. I don't want anyone to see it, to know it. From the outside, no one would really know that I had a problem. Well, except for the fact that I am not good on my feet and walking into the wall might give it away.. But, I could joke that off. Add a little make-up, fake hair, good clothes and boom....I am invisible.

For some crazy reason...I have it in my mind that the world is not equipped to handle people with illness. Most people I know secretly don't want you to talk about it, they avoid the subject altogether or frankly....the truth is, they stop contacting you. If by some chance I get that quick email from a friend who has fallen off the face of the earth since all of this has gone on, they talk about about how busy they are (every day of every week of every month) and make every excuse in the book not to see me. Surprisingly enough, I understand. I have even been called "selfish" for just talking about me and my problems. I feel like I can't win. I either continue to hide from the world and not reach out, or I talk about it. Maybe now, I talk about it too much. I guess it is because I had it bottled up for so long. I am the least selfish person that I know. It is really hard to make everyone around you happy. I am learning to be selfish in a good way and stop worrying so much about what others are saying about me.

The interesting thing is, it is alright if we don't talk about it. I just came out of the "closet" with being this way. I hid it for a long time, I was brought up to keep things to myself. "You don't want the whole world to know your business, it doesn't look good and not ladylike" Honestly, over this year and half.... as wrong as this sounds, I prided myself of being invisible. I always thought that illness marks you as a weak person. And for certain, Society definitely marks people with an illness as weak.

Illness can make you invisible. It made me invisible for a long time and frankly still does. Finally, I spoke out and reached out because I was tired of being invisible and ignoring the fact that we need help. We all need help when we go through a Hurricane. Whether we like to admit it or not. And when I opened my mouth, people either went in two directions...they came running to help us. And sadly, others went running the other way because it is easier to turn the channel and most of us have too much going on in our own lives and we just want to hear the good stuff when we have the free time. I don't get upset with them. That is a part of human nature.

Being invisible and ignoring is no fun and not healthy. Even one of the doctors at Cleveland Clinic shared with me that we need people, we need others help. And more directly, she told me that I need to forgive myself...that i did not cause this. And by ignoring, and trying to be invisible...the sicker I will get. Powerful words. Words that I am taking to heart.

Thursday, March 19, 2009

An update on my health after being at The Cleveland Clinic...long post...

Where do things stand now with my health? That is the million dollar question that I have been asked and I am asking. My husband was right last week, we did not go up to Cleveland to have instant answers. Even though there was a part of me that was hoping for a miracle and we would have answers.

Here is what we do know:

1.) I do have a spinal neurological disease. I was supposedly with the best doctor in the country for MS at the Mellon Center at the Cleveland Clinic. He felt confident that I did not have MS. However, due to other tests, he did declare that I had a spinal disease. Now, this is where things get tough...He has to go digging for what disease it is. I had some very specialized test done and I had an hour long spinal MRI. Should the blood tests come back negative, he will then start testing for tumors in the spine that may not show up on a MRI or the current blood tests. It will get more specified. Whatever is in my spine is what is causing me not to be able to walk correctly, or use my arms much. It is what is causing the excruciating pain in my legs and in my back. This will take a couple of weeks to wrap up to get any answers because it is so specialized. I am in contact with a Physical Therapist so that he can recommend me to intensive Physical Therapy so that I can walk again (properly) and use my legs and arms.

(2.) My bladder does not work the way that it is supposed to. I have no sensation to go like someone else would. Your bladder should only be able to hold about 350cc's, but, since I have lost sensation and have no idea when I have to go. So, it has gotten to where i can hold 900 cc's and by the time that I do go, it is very painful and my stomach is the size of a 9 month pregnant woman because the bladder is pushing on the intestines and then on my stomach, which has made it hard to breathe. No lie. Right now, there is Physical Therapy for this. They do not want to put a pacemaker on the bladder (thank god!) until we know more about the neurological disease. I will have to cath myself 3 x a day so that my bladder can get back to regular size (if that is possible) and give my kidney a break. My kidneys were bleeding pretty bad there for a while. The doctor said if I did not rest the bladder, then I could go into Renal Failure. My bladder and kidneys remain in a painful state.

3.) See above about my bladder, and that is what has happened to my colon. That too has stopped. There is terrible pain in my right lower side. The Dr. said that he will be working with the UNC Motility Clinic to continue treatment. They do not want to remove my colon at this time. I am grateful. Duke had an appt. with a colon-rectal surgeon for removal and I am so grateful for Cleveland Clinic looking at the total picture and not taking things out until they know everything.

4.) As for the seizures, passing out, etc...I have severe hypoglycemia and they do not want to take out my pancreas (thank goodness) nor give me medicine to control the pancreas because it will interfere with my gastro problems. I will need to make sure I eat protein and the good carbs 6x a day. The doctor is doing highly specialized test, because she believes that I am malnourished and not absorbing vitamins. So, those tests will come back in about another week.

5.) Headache clinic...for the severe, severe migraines that i have been having. She gave me nerve shots in my head and neck and that seemed to help. She will be keeping in touch with me until we figure out a plan.

6.) Stomach muscles have been ripped to shreds from all of the gastro issues. They have been ripped apart from each other. So, hopefully in time and insurance... they can put them back together.

I had 40 vials of blood taken and mostly specialized. That is why it will be another week or two until all docs come together to formulate a plan for my total recovery. Most of the doctors have attributed this to the spinal disease that I found out I have. I feel comfortable that the doctor will find out exactly which disease because of his expertise.

I had numerous MRI's, CT scans, some really uncomfortable procedures, a trip to the ER, because I couldn't handle the bowel prep they gave me and it caused me to have these 'episodes', basically like blacking out and the pain was horrific. My heart rate got out of control, so the test could not be done. I have a problem with a high heart rate and low blood pressure, and sugar. Those combination's make me faint...

The pain is the worst that I have had to deal with. That, and the inability to walk properly. I cannot drive, and haven't been able to since before Christmas. I have a hard time reading and writing..which is my lifeline. Right now, I am being cared for by my parents and so are my children. This part is devastating to me, because I am so independent and losing that has been emotionally painful. And the fact that I cannot care for myself on my own nor that of my children. They are with me, but, my parents and brother and sister have helped me care for our babies.

To add insult to injury, I have an abscessed tooth that has gone into my nerves and sinuses, which means root canal. So, the pain in my face is horrible.

Blake has been wonderful, amazing and has been the best nurse. He has had to carry me several times, when I could not literally walk myself, he has had to dress me and watched me go through some rather difficult exams. He has been my rock.

I realize that this is more clinical than emotional. But, I wanted to let you know what happened. We hope to have some answers in the next few weeks and formulate a plan.

We ask for your prayers for our children who have held up remarkably throughout all of this. I know it is hard for them to watch me not be the mommy that they know and they see me cry through the pain, because I do not have pain medicine. The doctors are concerned about meds until they find out where the disease is coming from. So, most days...I have learned to shut my body down and ignore the pain. The other days, I do cry...because the pain is so great. So, I ask for your prayers in handling the pain. Prayers for the doctors to find a solution. I ask for prayers for Blake and giving him the strength to handle all of this....his job, his traveling, everything that he does at home, caring for all of us. The magnitude of it all for him must be overwhelming. I pray for him. And I pray for my family....they have stopped their lives to take care of me and our children. I am forever indebted to so many.

We are coming up on 18 months of me being ill, and progressively getting worse. I know God has a plan. I do ask for your prayers that He will reveal it soon. I met some amazing people at the Cleveland Clinic who have been through things that I cannot even begin to comprehend. They inspired me and still do. I feel blessed, I have my family, friends, a great life, wonderful children and husband. I really feel my calling is to write and share with others. I am gradually able to concentrate more and more each day. I am grateful for that and blessed with my life.

I will write more later. This is a super long post. Sorry for your eye balls hurting!! God bless and thank you for your love and support!!!



Thursday, March 5, 2009

The National Initiative for Girls On Body Image and Self-Esteem.

I know I have sent out a lot of requests for you to join this cause. I have a lot of causes that I am passionate about. But, this one hits home for me. As two of our three children are little girls. I have already heard our 8 year old ask if she was fat. I was mortified. She is exceptionally tall for her age just like I was. She is growing at an alarming rate. At least for me it is. I did not expect to be ready for so many talks so soon. We try to talk about health and how our body needs to be fed good things so we can be stronger, think stronger, and live a longer life. It is hard to combat that with all the negative chatter at school.

Our oldest is very much into dancing, theater and believe it or not, she is already wanting to start her own fashion label. She draws the clothes. We encourage her talents as long as she can keep her feet on the ground.

It is up to us, to talk to every little girl in our lives that they are worthy, smart, capable and to help them be comfortable in their own shoes. Talk to them about what beauty really is. It is what resides in their heart. Because looks will age, but, the beauty that we carry on the inside lives on forever. That is what you are remembered for. We want the next generation of girls (Women) to believe that they can do anything they want in this world. We stop talking about weight, STOP talking about diets, instead teach them about health. Find their talents and help them to succeed in their dreams. Scratch the word "can't"..we don't allow it in our home. We say "It is hard"...Yes, it is hard..but, lets think of a solution.

I am not perfect, I was and still am at times a girl who suffered from low self esteem because I listened to the chatter. I heard the word "Can't" and I gave up. I blame no one. Because, our parents, grandparents and others were only doing what they learned. But, it is our chance to break the chain. We can help these girls believe in their self worth.

Help them reach for their dreams in confidence. Thank you for reading.


Wednesday, March 4, 2009

"A friend is someone who knows the song in your heart and can sing it back when you have forgotten the words"

It is no secret that I have been really sick lately. And truthfully, I lost my heart's song. It has been hard to see the light at the end of this physical journey of illness. I do what I know how to do best and that is to shut down and shut out others. Or send an email here and there so others think that I am just fine.

I have a wonderful husband who talked to a lot of my friends (unbeknown) to me. What ended up happening touched me beyond words. Friends drove from all over to come and see with me and rallied around me. Those that could not be there, wrote me emails, some were tough to read...but, they were real and honest. Family called me to just say 'I love you" I get teary eyed when I think of it.

The weekend before last, friends and these amazing women in our neighborhood came to my home and made our room like a spa. A place for me to forget my troubles. Some of the women had never met me before. They did my laundry, brought food. I was and still am speechless.

This weekend, I saw friends from college that I haven't seen in so long. They drove a long way to just see me. I was and still am humbled by it. They did what the quote said....they helped me remember words to my song that I had forgotten.

They brought food, magazines....but, what meant more to me than anything under the sun was that they brought themselves. We sat around and talked and talked about the old days, where we are now. We laughed so hard that I personally think that my ribs are cracked! :) The kind of laugh that you start sounding like a hyena. Guys don't get that about us gals. That is when they leave the room and huddle around the TV for Sports Center. :)

I put into practice what I said I was going to do and that was to be authentic. So, I let my heart out and was real. I showed them my hair that had fallen out over all these months and I cried when I showed them the walker that I had to use. I cried even harder when I told them that this was not my plan in my life and that on many days, my pain was so great that I wasn't sure if I was strong enough to fight through the pain in my body. I told them that I learned how to block out the pain and when I was having a good day, I would call or write. And on the bad days, I hid.

Together, we all held each other and cried and they assured me that I was loved and life was going to be ok. They reminded me what a fighter I used to be and reminded of times that I had forgotten. Reminded me of what I had been through before in my life, and that every time....I fought like crazy and never gave up. They reminded me of my dreams...that I was one to never give up on a dream. And reminded me of my beautiful family and that I had friends near and far that loved me even if I couldn't see them. They told me that I had an army behind me. My other friend wrote me the very same thing...that I had God's army, my family's army and my friends army all right behind me.

The next day was seeing another dear friend (but is really my husbands Aunt) and having the best time talking with her and hearing her stories and sharing mine and realizing that we are not alone in our troubles.

Going through pictures brought back so many great memories and that it reminded me that I was still me somewhere deep inside of this hurting body. It made me laugh and it made me cry.

Then, the next day, other friends came in from Charlotte. I had already gone through pictures and laughed and laughed at the crazy, silly, fun loving girls that we were. They came to just see me...just like my other friends. We did the laugh that makes you snort (not attractive, but, the best way to describe it) One friend laughed so hard that she stopped breathing for a minute and then the roar of laughter came out. We reverted back to our old ways. We were all roommates and made jokes at each other and reminded each other of the jokes that we would play on each other and god forbid....others. ;) We caught up on all these months. We were teenagers again and it was awesome!

Then, it got real. We talked about my upcoming trip to Cleveland Clinic and as they say "the shit hit the fan" Friends tell you what you need to hear, not what you want. That is when you know you have a true friend.

They told me that it was ok to be angry at my body, it was ok to cry...that it wasn't a sign of weakness. They told me that hiding and pretending that all was well was not fair to the people that care for me. I was honest and cried and told them how scared that I was. And that truthfully, I didn't feel worthy of anyone's friendship right now. Because I see all of my friends having the perfect life and how could they possibly want to hear about this test or that test that came back positive. That I am scared to death that my liver used to have only one cyst and now has many and that my kidney had a cyst on it now. I told them how scared that I was that I have something on my brain that I didn't like to hear. I told them that I was scared shit-less of the seizures and that has caused me not to be able to drive or really go anywhere. I have to be checked for a type of cancer that my friend Michele had. I told them that I was tired of trying to be strong, that sometimes I just want someone to hold me and let me cry. My husband lets me do that all the time with him. But, I feel like he is burdened by all that he has to do and taking care of me and the kids so much. He is amazing.

I told them that I was holding on to my Faith with all my might...because there have been many days when I did not feel that God was near, nor did I truly believe that He could care for a screw up like me. I told them that maybe I was being punished for being a wild child back in the day, or that maybe it was because of the things that I said or did wrong in my life or maybe I drank too much back then, or maybe I wasn't a good enough friend, mother, wife, sister.......I rack my brain all the time trying to figure out what I did that was so bad that I am being punished. I admitted to being afraid to go by myself.

Then, as true friends do.....they hold you and tell you the truth...that I am not being punished and yes my faith is being tested, but, I will come out of this stronger. And no, I wasn't a burden to them or my family and in fact it hurt them that I only called or wrote on the good days. Someone once told me that I was putting my family through hell and I haven't let go of those words yet. It is wrong that saying " Sticks and stones may break my bones, but, words will never hurt me" They do hurt me. They admitted they wanted all of me...the good and the bad. They reminded me that we had all been friends for over 20 years and there was nothing that I could do to make them stop loving me. They reminded me to stop listening to anyone who was negative. Let all the things go when it comes to others saying and doing hurtful things. And to STOP worrying about what others think. And that I was strong....I used to be and still am that woman that can get on that plane and do this on my own knowing my loved ones were praying for me and were behind me.

What a blessing. A true blessing. I had another group of friends come in from Charleston this week, but, she has the stomach flu so bad that she can hardly breathe. I know everyone is worried about me having someone in the house in case of another seizure or passing out. But, that is the one thing that I am trying to hold on to....being able to stay in my own house.

I am grateful, blessed and in awe of so many people near and far for their support. It so helps to hear what is going on in another life so that I don't feel so alone. Frankly, it is nice to know that the notion that i have that everyone is perfect, except for me...well, talking to me and telling me your real story helps me tremendously.

I am still scared, but excited that maybe, just maybe...this is the beginning to the end of this nightmare and I will be running that 5k with my buddies. That I will be well this summer for my 40th birthday and be with friends who love me and support me and laugh like there is no tomorrow. And one day...I will be walking on that Academy Award stage.

I am lucky...truly lucky and blessed. There are just so many people to thank. But, I promise to pay it forward. I am finding my heart song again....