[Mysticred]

Hi everyone, I know it has been awhile since I have last wrote anything. I would love to say everything is or has been wonderful but I would have to lie and well I am lousey at lying.

But before I begin I do want you to know little Miss Sierra is doing wonderful, she has been seizure free now for 4 months, she goes monday Nov 10th for her check up and things are finally giving my little doll a break. She got picked for the football season cheerleading squad and she is so happy it is all she talks about. I also got to see her in July for a week, and naturally when she left to go back home we both cried like big babies. Her weight is 42 lbs now she is still on the small size for her being 10 but the doctors are all pleased with her. She got to be tinkerbelle for halloween, her first one in such a long time. Things look so wonderful for her right now, maybe now she can be the happy little girl she deserves to be.

Now about me, I have been off of all my lupus meds because my kidneys decided to take a nice dump right after my second infusion of rituxan. I have been on what I call house arrest, I have been told avoid sick people well unless I walk up to someone and say excuse when you sneezed back there is it a cold or did something tickle your nose seemed rather pushing to me, so I basicly stay home. The pain has been unbearable even my pain management I swear by is shall we say useless. So they increased my pain meds, which has now caused me to be a person that burst into tears at the drop of a hat.

On the 4th of Nov I saw my rhuemy and he ran all the blood work, and urine test, he is hoping that things have straighten out and he can get me back on methortrix (or however you spell it ) and start my rituxan back up. BTW the lupus numbers and all were wonderful from my second infusions than wham the kidneys went south. So he pulled me off everything so not to go into renal failure again.

Yesterday was my birthday, and the day 10 years ago I was told I had lupus, and needless to say it was a emotional day for me because once again I am sitting here waiting on lab work.

Things between me and my husband is so rocky right now. My kids live in Oklahoma and we live in SC. So when I am too sick to be home alone he has to take off from work to be with me so I am not alone, which means he misses pay for that day, which is making things tight for us. He is not helping matters either he is drinking more and more at night that all we do anymore is fight. He works during the day and I sleep, he comes home starts drinking and I go into the office and lose myself in video games. At first I made excuses for his drinking, but as of lately I find myself so angry. I am fighting so hard to be well, I am dealing with SLE lupus and RA, and kidneys that want to work only when they want too, I can not understand why a healthy person would drink this way. So things are slipping into no talking. And God forbid I should start to cry, he get angry and tells me to shut my pie hole and naturally being a natural redhead I tell him to climb into another bottle of booze which just makes things even more stressful.

The icing on the cake is my best friend in the whole world is having an affair and because I think she needs to think of her husband's feelings caused us to have a major falling out. She has always been there for me, I was raised to believe when you take your wedding vows you stay faithful, she got mad and told me I was old fashion and nobody is faithful anymore. I liked to think she is wrong. So basicly since about August her and I have not spoke, before this falling out even though she lives in Oklahoma we were on the phone everyday for several hours. I miss her, but she is still mad at me for not understanding her needing attention that her husband was not giving her. And the affair ended about a month ago when his wife figured out about it. She feels I need to say I am sorry for not being there for her.

Right now I feel like I am totally alone. I am sitting here knowing I should be sleeping and resting but what I should be doing and what I can do is two totally different things. I have never been a person that cried alot, life has always been tough for me, and it made me stronger, just right now I feel like my world is crumbling all around me and I have no idea how to stop it.

Tuesday is when the labs were done, my doctor told me he would call me Wed. afternoon unless the numbers were still bad than he would have to contact my kidney doctor and take it from there. It is now early friday morning, I have Nancy Grace playing in the back ground and trying to decide if I should be scared because he has not called or to think positive that he was just busy and forgot to call me.

You all must think I am insane. Maybe I am lol. I am sitting here, crying, laughing and thinking these people will think you have gone of your rocker.
Maybe it is a form of being postal from not being out of this house all these months. Who knows, but I feel better talking to you guys, alot better then I have had in a long time.

So on that note I will close this long rambling post and actually try to get some sleep.
Thank you for listening....Dawn

 

[greenhaggis]

Dawn,:hug:

I have to rush out (take little ones to school) so have not got the time right now to do more than send you lots of virtual hugs.:hug:


Please take care of yourself!:hugbetter:

Hugs again!:hug:

Lesley

 

[neongirl]

Dawn,
I am so glad Sierra is finally getting to be a carefree little girl, it has been such a long hard road to get to this point for her. It's great to hear she is enjoying life and that you got to have a wonderful visit with her.
I'm so sorry your kidneys decided to rebel. Sometimes life is so unfair. The pain meds are a necessary evil right now, so don't beat yourself up over being tearfull.
Happy belated birthday (mine is tomorrow), just remember, we Scorpios are a tough lot!, determined and hard headed:wink2:.
Try not to worry about the lab results, I know it is easier said than done, but, Drs. forget to call people all of the time, and, besides that, whether the results are good or bad, worrying won't change them.......you have "right now", so do what makes you the most happy and peacefull "right now". Is your Dr. the kind you could just put in a call to his office and ask?
As for the husband/drinking, It sounds like avoidance of him may be the best thing for now.......neither one of you are able to handle any more stress. Just remember that his choices, and the results of those choices, belong to him. Everyday millions of people are put into horrible, stressfull situations not of their making, of which they have no control over......the only thing they have control over is how they choose to respond to the situation, be that good or bad.
The friend; is there anyway that you could explain to her that you were being there for her by telling her the truth as you saw it, even though you knew it might make her upset, because you cared enough about her to go out on a limb and risk her being upset rather than take the easy way out and just tell her what she wanted to hear? Sounds to me like you were there for her........just not how she wanted. She wanted an accomplice, not a friend:sad:
Take care, and try to rest :hug:

 

[LolaLola]

Dear Dawn, (my real name too),

Sorry to hear things are so awful. First of all is there any way that paying someone to stay with you when needed would be cheaper than Hubby losing pay? It would also be another person for you to see.

Your problems do sound very big, and I imagine your Husband wouldn't talk about them with you and a Counsellor.(MOST MEN WON'T).

If that is the case you are going to need some sort of support for yourself. We are here and don't think you're mad but it would be good if you had someone closer to home.
x Lola

 

[flutterbye]

(((Hugs)))

Am sorry that you have so much on your plate at the moment, it must all be very hard to cope with.

I can relate to that feeling of being on a rollercoaster, you certainly aren't insane, far from it, if you didn't feel emotional and overwhelmed I think that would be strange!

It is good to hear that sierra is doing better, hugs for her too.

I don't have any great advice, really I can't think what to say, except to give you hugs and my thoughts, and to say that I hope things will get better for you, please do try to keep talking to someone, a 'real' person or us 'virtual' people. It is so hard to go through this stuff and feel alone with it.

With love xx

 

[lazylegs]

Hi Dawn,

I am so happy to hear there is finally some good news about Sierra :trampo:. Hopefully she will remain stable for a long time.

Sorry to hear about your kidneys. I hope the blood work comes out normal so you can get back on your medications. Since you haven't heard from the doctor yet I suggest you call his office.

I agree with Neongirl about your friend. She knew she was in the wrong and wanted you to back her up. You were a true friend trying to show her the error of her ways. If she had listened to you two families would not have been destroyed. Sometimes doing the right thing isn't easy and has unfortunate consequences. At least your conscience is clear.

Take care,
Lazylegs

 

[Mysticred]

me again

Thank you all so much, I knew in my heart I should have came to you all sooner. Today is the first day in a long time I have not felt completely alone. And it is because of you wonderful caring people.

I called my doctor's office and naturally got his nurse's voice mail. I left a message and am still waiting on a return phone call. I am trying to stay positive about it, agreeing he is a very busy doctor. I am so lucky to have him he is the leading doctor in his field here in Charleston, so I know what his days are often like and his nurse she is wonderful and caring, so I know you are all right he and she are just busy and not ignoring me.

I guess I am so down right now mainly is because I felt I had no one to talk too. As for looking for someone to come to the house when I am not up to being alone, we have lived here in Charleston for almost 5 years and to be totally honest I do not know anyone outside of my doctors and nurses, God is that not sad. :lol: I actually have a hard time telling people I am sick, granted I am in a wheel chair because of my lupus and a blown patela tendon that ruptured 5 years ago, people just think I am unable to walk because of the brace on my leg. We tried to get us a home visit nurse which my insurance approved us for but my dog bless his heart did not like her and come to think of it neither did I, she was always either very late or she would call and ask how are you doing do I need to come today and still tried to collect the pay for not coming, so I got my doctor to fire her.

It just is real hard when you are in one state and your entire family is in another. We have even talked about moving to Oklahoma to be closer to my kids from my first marriage, but jobs there are so far and few between them and Lou's training is with ships, not alot of ships in Oklahoma. And not to run Oklahoma medical field down, but when I was there and first told I was sick with lupus, for the first 9 months I had a cold I could not shake, it got so bad I finally said look something is seriously wrong here, when they tested me and it came back I had lupus, this is what was said to me, you have lupus, there is no cure and there is not a great deal we can do about it, we're sorry, oh yeah and have a nice day.

OMG my doctor just called, I can go back on the medicine and we will be starting the rituxan again hopefully in January. My kidneys are still shakey but they are going to try smaller doses. So tonight I start my methotrax back up and yes one day I will learn to spell that word lol. So between now and January my kidneys need to stay as they are or behave completely. I would love to settle for behaving completely, but now I can think about feeling better and getting off of these god awful pain medicines.