Saturday, April 4, 2009

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.


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