Rough Day, awful year

Today has been a rough day for me.  I have been bursting into tears every time I turn around. I have never felt this low as I do right at this moment.  This year has sucked, and it is only April.

I have held this in so long, but right now I need to let it out if I am to feel better.  I lost someone who is very dear to me, someone who was so much more then a friend.  I believed our friendship was strong and that we were there for one another through good times and bad.  Then suddenly I realized that it was possibly only one of us that felt that way and it shattered me.  The one person I counted on was no longer there.  No this person did not pass away, but it hurts just as bad since she turned her back on me and our friendship.  I find myself often reaching for the phone and think " I need to tell......" and I realize she is not there for me anymore.

The male that came between us is now trying to be friends with me again in my game I play.  Part of me wants to tell him off and ask him what game is he playing now, why the so nice, so sweet so caring act.  And another part of me wants to try and understand why I lost my friend over this man.  I want to ask was he really worth walking away from a 10 year friendship, was he so wonderful and amazing that you had to hurt me so deeply, was I ever really your friend?

Then I am dealing with being in Charleston and away from family, my granddaughter is going through a hard time right now with health issues and I feel so far away.  I miss my family with each and every breath I take, to the point I am miserable.  I am dealing with my own health issues, I feel like I am at the end of a very dark tunnel and there is no light at the end.

There are times I want to just shake my husband and say "hey I am here, NOTICE ME." But he goes to work, calls to check on me laughing and joking, then he comes home at the end of the day and he is cranky and mean and hurtful.  He goes into the office puts on headset and turns his music up and turns me off.  I am home all day by myself with 3 dogs that I hate, and at night I am alone with the man I gave everything up for and he ignores me and I again wonder why.

Am I such a bad person that people thinks it is okay to hurt me, shut me out or turn their back on.  I wonder why do I try so hard to make things work when nobody else cares, why should I care when they don't?

Living with a disease that you know is killing you is not a easy thing,  You wake up every morning thinking this could be my last day.  You shake off the bad thoughts and you smile and tell yourself in a strong voice " I will not let you beat me."  But when the people you love and care about walk away and leave you totally alone you find yourself whispering, "Go ahead beat me I just do not care anymore."  You feel all the fight being sucked out of you.  And you cry alone.

I try saying to myself shake it off, forget them, you have yourself to think of, you have to beat this God awful illness.  You stubbornly wipe the tears away and you say in a strong voice, "I will not let you beat me, I can do it alone!"

Sierra is home

Sierra arrived home this afternoon.  She will probably begin rehab next week.  Kaleb was a little frighten and worried about her being in her wheelchair.  Shae quickly explained it was only going to be for a short time.  

My happiness about Sierra returning home and on the road to recovery was dampened by the news I received about my infusions.  My insurance once again is refusing to pay the bill and the wonderful company that was covering it needs to re qualify me which can take up to 3 to 6 months.  Which means no lupus drugs except for my methotrexate, which is such a joy to take.  I went through my feel sorry for me time and now I just have to accept it.  I think I am feeling numb.

Well I am taking myself off to bed.  Tomorrow will be a brighter day..... unless it rains =P

Licks and nibbles, Dawn

OOPS forgot something

Google is being wonderful placing ads about children and seizure, disability and my lupus.  I am asking if you are reading my blog could you please click on these ads, I do not want to lose them.   They are very helpful for people that do not understand Lupus, seizure, even disability.  Not all the ads are trying to get you to buy something.  Some of them are information about what is important to me.  So please take the time and click.

Thank you, Dawn

Sierra, Shae and other interesting things

Sierra breezed through todays surgery to remove the grids, the MRI following the surgery took forever and to add more to the mix she is now running a pretty high fever but no one can answer why.  

I talked to Shae today and got to see Sierra on the webcam, she looked so wonderful all I could do was think about how much I wanted to hug her.  The doctors hinted that is the fever breaks Sierra could be released within a day or two.  Would it be asking too much for NOW.  I know Shae would not argue with me on that one.  But we will see.  

Yesterday all this finally took a toll on me and I simply crashed and burned.  I laid down yesterday about 4 pm and slept right up to almost 3 pm today.  I should say monday, because right now it is Tuesday early morning.  I am hoping to hear some word on my infusions but once Sierra is home and recovering I think the stress level will go down for me and maybe my blood work will not be so crappy and the infusion will be scheduled.  Well I am hoping anyways.

I am not going to head to bed, actually feeling tired so I am going to do what I am suppose to do and that is to sleep as long as possible.

Licks and Nibbles, Dawn

Long day

Sierra was taken into surgery this morning at about 8:30 am her time.  She is out and on her way to ICU and she is feisty as ever.  She is demanding water.  The Doctors removed a small portion of her brain which on Sierra's blog it goes into detail better.  After all is said and done she is doing wonderfully.  They replace 3 small grids and Shae said if she has no seizures over the weekend they will go back in and remove them and she will be on her road to coming to home soon.

I am so emotional right now I do not know whether to laugh, cry or both.  It had been such a long road for Sierra and Shae this time around, and a hard one.  But they are going to make it, I know that now with all my heart.  I know I keep saying how proud I am of Shae and I realized there is no words to even describe how much I love her and am so very proud of her and how she has handled this all.  Even during her darkest hours there she stayed strong for Sierra and made sure her daughter was number 1.   

Everyday my daughter deals with a lot, being a mom of not one handicapped child but two.  I never gave her the credit she deserved but now I am.  I love you Shae and I am so so very proud to call you my daughter.

Love your mom

Emotional few days

It has been a emotional couple of days.  Up and down with Sierra's hospital stay.  I have to give Shae a lot of credit, how she is staying so strong during this is amazing.  I am sure if you are following  Sierra's blog you know what kind of roller coaster it has been for all of us but mainly Shae because she is dealing with this alone in Texas.  Yes she has our support and all the well wishes still she is the one that is alone there with Sierra.  She has no one close to actually hug and have a shoulder to cry on.  But even alone she is doing an amazing job.  I just want everyone to know I am so proud of her, for being strong for her daughter, to be her daughter's voice and not take any BS from anyone including the staff of the hospital.

Hugs and kisses to my two girls, I love you both.

Dawn

up date on Sierra

For those that have not gone to the site Shae has set up for Sierra, I want to let you know what is going on with her.  First I got to see her on the web cam but it is not anywhere near to me wishing I was still there.  I was chatting with Shae when the EEG tech was doing test on Sierra needless to say our little redhead was showing her true colors, she was not pleased about him or his waking her up.  She is still not eating very much or drinking, she is running a fever which they  are watching carefully.  She is on the seizure ward, Shae knows what it is called better then me.

If you have not been to the site Shae set up for friends and family to give Sierra wishful thoughts I do wish you would go there now and post a little something for her, she is really down right now and I know friends and family leaving their messages means a lot to her.  She misses her brother and wanted him to stay but Zack and him went back to Norman.  So Shae is there dealing with this alone and I am sure the postings are helping her also.  

Hugs and Kisses, Dawn

Quick update on Sierra

Sierra is on her way to ICU, they placed the grids and placed her on a ventilator to help her breath.  Now the waiting game begins.  They will be watching her for seizure activity.  If things go as planned they will go back in on friday and remove the grids and the part of her brain the seizures this time are coming from.  Again if you want to know more please go to the caring bridge site where Shae is keeping everyone updated.  I know she told me a lot but once I heard she was doing ok and heading to ICU I lost it and the rest of the phone call was kinda of a emotional relief for me.  Just knowing Sierra made it through this one, just knowing Shae has Zack there and Kaleb and that she is not alone.   I am so proud of Shae she is amazing.

Hugs and kisses, Dawn

More sad news

I found out last night that someone who once was someone I thought of as my best friend lost a family member.  I did not know how to reach out to her other then here.  In the past when I tried to mend the bridges between us, I kept getting shot down or she came at it half heartily.   No matter what happened I just want her to know I am sorry about her Uncle's passing.  And that my prayers are with her and her family in this sad time.  

Hugs and Kisses. Dawn

Cooke's Children hospital

Sierra entered the hospital yesterday and on Monday morning at 7:30 she will go in for the first surgery scheduled.  This is the one to put the grids in.  Shae has set up a blog for Sierra and how she is doing.  Here is the link:    http://www.caringbridge.org/visit/sierragodwin.           You are welcomed to post on that site and let Sierra and Shae know you are there.  Here is Sierra's new pretty hair cut she got to make her hair shorter and easier to manage for the surgeries.

This blog was meant for

This blog started out with me talking about playing wow and now suddenly it has rolled into my family, my friends and my battle with lupus.  World of warcraft has suddenly taken a back seat.  

Talking about my babies makes me feel closer to them, like they are here in my home in South Carolina and not so far away in Oklahoma.  I feel I am missing so much not being there watching them grow into young adults.  One minute Sierra and Kaleb were little kids that fought all the time, Kaleb turns 7 this year and I have missed all his birthdays since he was 2.  Sierra will be 11 and growing up so quickly.  Memphis left South Carolina before he turned two and I have never held Keegen.  My daughter Shae is getting married again soon and her two kids will turn into a ready made family of five.  So I will be opening my arms to welcome my new son in law Zack and his three wonderful adorable children.  Sierra had always been the only little girl now she is the oldest girl with soon to be 2 new little sisters that adore her, and Kaleb is getting a little brother that all boys want.  I am so proud of my daughter she has finally found someone that makes her truly happy and accepts her two wonderful children with their disabilities.  Though her and I have had many many screaming matches we both always agreed on one thing, Sierra and Kaleb deserved to be treated like any other child in the world and not to let their disabilities stop them from doing anything they wanted.  I love all my grandchildren and my son and daughter..... I miss them and their families with all my heart but we all know my best place to be is here in Charleston where I have the best doctors taking care of me.  So no matter how far away from me they are, they are always in my heart and on my mind.

The pictures this time around are of Shae's new little family.  All five of her babies.  And of course a close up of the 3 little princesses.

Licks and nibbles, Dawn

No infusion

Well yesterday was suppose to be my day of my long await infusion.  Notice the key words SUPPOSE TO BE........ yes you are correct it did not take place.  It is another waiting game.  Now the reason for this is because my numbers were shakey at best but not in the range for me to receive my infusion so once again it is a waiting game.  I spent the day yesterday in tears, it was very emotional for me, my emotions were already on a roller coaster because of whether my kidneys were behaving, the pain I have been in due to unstable weather and Sierra facing once again more brain surgeries and me not being able to be with her.  So I ended up being a flood of raw emotions yesterday.  Anything I said or did would tail spin me, anything said to me would tail spin me.  But I did sleep last night and got the much needed rest that is being harped at me about.  The sleeping medicine worked, granted I am not overly thrilled with taking yet another medication but I will do whatever it takes to get my infusions and hopefully get my lupus into a remission.

The highlight of my evening was a very sweet surprise from my daughter, she called me and told me to get on my yahoo messenger she had a surprise for me.  I about cried, there was my sweet Sierra and Kaleb and my daughter's soon to be three wonderful adorable step children.  They were all blowing kisses for me and waving.  I am going to ask her to get a picture of all five of them so I can post it here.

Now the worried news, as not many knows my son is also dealing with having lupus, he is 30 years old and a loving father and husband and dealing with this god awful illness.  He is now possibly facing one of the wonderful drawbacks of this illness, he has been having serious stomach pain and will be seeing a specialist to determine what it is.  Any extra illness can spiral a lupus patient at any given moment, so naturally I am concerned and worried.

And speaking of Matthew and Tiff here are some pictures of their two little joys, Memphis and Keegen.  

Now I am off to play in my wonderful world of wow.......  Butterscotch will be level 80 today =)

licks and nibbles, Dawn

Doctor's visit

Well I got my blood work done and now we wait.  Anyone ever said waiting wasn't hell lied to you.  We have decided to have the low dose chemo whether my kidneys are acting up or not, at this time this experimental drug is kinda the end of the road unless some smart young doctor out there figures something out real quick.  There is a lot of mix feelings about this drug, it still is not completely approved by the FDA for lupus usage yet.  It is known as unlabeled for lupus, thank god for small bills that are passed.  The wonderful people of the United States government passed a bill saying insurance companies has to cover unlabeled drugs for lupus usage.  So now come April 7th I get to be hooked for 5 hours this drug and hopefully this time it works.  And in the mean time I was put on yet another drug, seems I am not getting enough rest or sleep, with no immune system I am required more rest and sleep then the rest of the world so my wonderful doctor put me on a new drug to help me do this.  Now if we can find a way to lower my stress level maybe there would be less flare ups.  One could only hope.

Ok enough with the boo who of my lupus and everything, one has to stay positive.  

Please keep clicking on the wonderful ads they change around every few days.  Lupus is a big part of my life and a part I would like my friends and family to understand.  Please know lupus is Not my life, my family and friends are =)  here is a picture of my Sierra's adorable little brother Kaleb , my grand children are a very large part of my life.

Licks and nibbles and on with WOW,  Dawn