me-Stucky in Kentucky

Filling you in

2007-11-04T20:28:00.000-05:00

I haven't blogged since Sept. I figured I should probably fill all my blog fans (if I have any) in on what has been going on in my life since Sept. My health - I found out that the disease is in remission in my lungs but my lungs are still badly scarred which will still cause shortness of breath and a little pain, nothing I can't handle though. I have stopped my steroids. I wasn't supposed to but I could no longer handle the side affects. I now feel better since I have been off of the steroids. I don't think I will go back on them unless I get really bad again. I go and see a new pulmonologist on Tuesday to get refferals to the appropriate doctors to see if it is in my joints, muscles and bones- they suspect it is, due to my symptoms. My family - the kids are good. K*** has been talking in class and bringing home some incomplete papers and talking in class which was surprising! She can now count to 10 in Chinese and say several words already like panda bear, head, shoulder, knee, toes, hello, goodbye there are more words that she can say but it is hard to get her to tell you what she is saying, she can be stubborn like me. A**** is getting wilder by the minute! He is the most loveable little boy. I guess it is just something with little boys they truely are mama's boy's. R***** is working for a painter and doing really well the painter likes his work and has really helped R out alot. All in all I think things are getting better for us I just wish we were able to help mama out more with bills and with whatever else she needs....it will come.

It's been a while

2007-09-10T14:08:00.000-04:00

I haven't blogged for a while now. I have been busy with school. I thought school online would be easier but I believe it is a little harder, due to the fact of not being inside a classroom. Nothing going on really, kind of boring around here. R is still working. I don't really care for third shift but hey, a job is a job. I thought my health was improving but I was wrong. I went to the dr. the other day and he listened to my chest and my back after I told him I was coughing again and sent me for an x-ray and I found out I have pneumonia. I told him that I had just had a pneumonia shot while in the hospital and he told me that those things were no good. Well, great I got a shot for no reason. Maybe he meant not good for me. I have heard of them helping some people but evidently, I am not one of them. Anyway, the kids are good and my mom is good I just wish I could get rid of this cough "HACK-HACK".

Going to College

2007-08-15T20:53:00.000-04:00

I haven't blogged in a while been really really busy. I have been doing alot since my last blog though. I will try and fill you in on everything that has been worth talking about. K*** started school Monday. She seems to enjoy it, she just isn't used to getting up that early in the morning. I get her up at 6 and every morning she has said "mama let me take a nap before school". Now when she gets home in the afternoon she has been wanting to take a nap but I haven't let her because it would be too hard to get her in bed at a decent hour.

My husband got out of jail he has really here lately been helping out around here a whole bunch. He has been keeping the house clean and really letting me rest to try and get rid of all the pains that I am having under my rib cage due to this damn disease. No, he still hasn't gotten his job back yet but they are waiting on the background check before they will hire him back to make sure that there are no more offenses against him which is understandable.

Also, I can tell that my mom is getting really really aggrevated with us especially with the kids. When they cry or interrupt her TV she makes faces. "Yes, mama I see you do it." I understand completely though she went from having total privacy to having her daughter and two babies in her home which is a full house. I am hoping that she just has a little more patience with us.

My health is not any better I had tests done on my hormone levels they came back normal. I had another cat scan on my lungs and it came back about the same. The dr. put me on a lesser dose of steroids and I think that going through the withdrawals from them is making me very achey and tired. I will make it though. I don't like to whine but sometimes I have too.

My son is doing great he is starting to use the potty and he is really starting to talk a lot more now. He is at the age that is the best he is so lovey and so funny.

I also started college back via online and have been enjoying that. Hoefully I will get a degree and do somewhere with my life. So I have been really busy the past few weeks. Going to school online is really pretty cool when you have kids it is a lot simpler than having to go to college and find a babysitter, gas money, and the time to do homework with them crawling all over you. Now I can get online at anytime during the day and do my homework when I am ready.

Well that is pretty much it. I will try and keep everyone updated on things and I will try and blog a little more later.

FREE BIRD

2007-07-26T21:10:00.000-04:00

Well, my husband gets outta jail tomorrow. K*** is excited to see her daddy. She is ready to go to bed so that we can get up early and go and get him. I am glad he is getting out but I really don't want the schedule that I have my kids on to get screwed up. So, he will be warned tomorrow that they are on a good schedule that they need to stay on! I think I have done pretty damn well since he has been gone. I thought at first that I wouldn't be able to do it by myself but I was surprised, I've done great although I get a little tired every now and then.

I went to the doctor the other day and found out that my lymph nodes are still enlarged and that the sarcoid is the reason, also that my thyroid problem is also probably affected by the sarcoid. I am feeling a whole lot better almost back to my old self but I think that is the anti- depressants working. I still am fatigued and have the pains under my ribs, but I will be just fine.

I have also decided to go back to college. I might as well since I really can't do to much else and I did love to go to college. I love history. Hopefully I can get a degree and start teaching history. I learned the love for history at the first college I attended and also when I visited Washington DC with my mom on vacation. It is time for me to do something that I would love to do and I don't think that a teaching job would be to strenuos and hard on me as long as I feel the way I do now I know can do it and that is what I am going to keep telling myself is that I know I can do it.

Whether you think you can or think you can't, you're right-Henry Ford

DUCT TAPE

2007-07-18T11:55:00.000-04:00

My son can break into or escape from anything. He can open fridges, cabinet doors, closet doors, and the worse thing is that he is opening and shutting the oven door! He opens closet doors, curio cabinets and likes to turn the TV on and off and reset all of the settings on it through the menu buttons. WoW! Only 18 months old and can already program a TV. He is getting to be a little terror! I have a baby gate up to our kitchen (to keep him from roasting his head in the oven)and this really isn't an answer because as soon as the gate opens terror is loose! So I thought of another idea a really great idea- it works!If anyopne that reads my blog has a 18 month old terror like myself and can't afford all the baby proofing gadgets that they have out there just go to the nearest Dollar Store and buy a couple rolls of DUCT TAPE!!!!! it works. Cheap and effective. Duct tape is now a new accesory in my mothers home. It is very elegant and comes in the fancy color gray! I think they have red and blue also if you aren't a fan of gray. Anyway, there is duct tape on the refrigerator door- so that he can't pull it open and drink all the mustard like he has been doing. It is on the freezer door- because he now moves the chairs over to the fridge and gets in the freezer. There is duct tape on the cabinet doors- so he won't decide to drink some pine sol. There is duct tape on the oven door- in case he decides to cook a roast. There is duct tape on the TV buttons and the TV stand- so that he can't delete me and my mothers daily dose of Days Of Our Lives. So the duct tape pretty much works on everything!

This is the only thing that it doesn't work on !!!!!!

What in the Hell ???????

2007-07-17T15:13:00.000-04:00

Kids are napping, so I figured I would surf the web. I came across this dog or beast whatever you wanna call it and all I could think was "What in the hell???"

He must be on steroids and have sarcoidosis. He looks the way I feel sometimes!

HATE is a strong word.

2007-07-17T09:21:00.001-04:00

My last post I decided to do 50 things I love and this post was going to be 50 things I hate. Well, I decided that would be wrong.... I don't want to hate, so I will list things that drive me crazy or that I can't stand or that I just do not like.
HATE is a strong word.

Sports.
Being sick.
My husband in jail.
Negative people.
That I need to stop smoking.
Not being able to work.
Not having a vehicle.
Having this disease.
Death of loved ones.
Tomatoes.
Onions.
Most reality shows.
Being overweight.
Sweating.
Whining.
Worrying.
When my kids are sad.
Alcholics.
Drug abusers.
The smell of burnt beans.
1981, Z28 Camaro.
Liars.
Cheaters.
Thiefs.
Unresponsible parents
Everything my dad has put my family through for the past 30 years.
That my husband cheated.
That I have had to make excuses for some of my husbands behavior.
My hair.
My ankles.
Seeing kids that are in need of love.
Strawberries.
Barney the purple dinosaur.
Most country music.
Britney Spears.
Mosquitos and gnats and all bugs.
Hollering.
My daughters scream.
Okay, this is getting hard.. I can't think of much else without getting to personal.
Poopy diapers.
My big wide ass.
When the swing makes that aggrevating squeaking sound.
Doing dishes.
All housework.
Taking my moms privacy away from her.
The privacy that was taken away from me.
LAWRENCEBURG KY.
The Kentucky river in TYRONE.
Wild Turkey Distillery.
My Dad.

Sheww !! finished. This is kind of a hard thing to do without getting really-really personal. I hope everyone enjoys. This was fun.

50 LOVES

2007-07-16T23:27:00.000-04:00

I have decided to do something a little different tonight for my post. I want to get off of the hubby in jail, me being sick , whining posts and try something fun. I am going to try and write 50 things that I love and 50 things that I hate. I thought this would be a pretty good way to release a little stress and also make me do some thinking about other things that I have loved to do or would love to do again or this just may seem a little silly to everyone either way here goes.

Things I love

1. My family

2. Music (certain kinds)

3. Watch my children playing with one another

4. Being able to have days where I feel in good health

7. Driving

8. Happy kids

9. Smoking cigarettes (the reason I can't stop)

10. This big cotton comforter that my mother has

11. Sitting in the swing and having long talks with my mother

12. My back rubbed

13. My hair played with

14. My anxiety medicine (took two tonight.... I WILL SLEEP TONIGHT)

17. Hanging out with my brother when he is happy

18. Listening to music with my husband

19. Cooking

20. Petunias (hee hee)

21. Days of our Lives

22. Harry Potter books (I've read them all)

23. I loved college

24. I loved my driving job

25. When my daughter will open up to me

26. When my son won't have anything to do with anyone but me (selfish a little???)

27. The smell of my kids and my husband after they have bathed

28. History

29. Watching my babies sleep

30. Living in a safe home

31. My cat

32. Clowns

33. Laughing

34. Steaks on the grill

35. When I don't have worries

36. The fact that my great grandfather held his great great grandaughter when she was a baby

37. When time goes slow

38. When I could breathe I loved swimming

39. Winter

40. Peanut m&ms

41. The color yellow

42. Pajamas

43. New socks

44. Money

45. Johnny Depp movies

46. Pillows

47. Clean bed sheets

48. When me and my husband are happy

49. When my family is happy

50. When my kids are happy

I will post the things I hate tomorrow this took a while. I am still thinking of things that I love or have loved. Everyone should try this it makes you feel pretty darn good.

Mama, Mama, Mama !

2007-07-15T01:29:00.000-04:00

1:30 in the morning, I can't sleep. Things are very hectic right now. I have no time to keep my blog like I was. I hope I don't ramble tonight because I am so tired. I will try and fill everyone in on things that have been going on since my last blog on July the 4th. Oh by the way Happy belated 4th everyone. I wrote in my last blog that my son has become clingy since his daddy was in jail. Well, now that was a total understatement. I now have a shadow.

Mama, mama, mama, mamaaaaa!

My mother and I were sitting on the porch swing this evening watching my kids play in the yard. I looked down at my son who was sitting on the sliding board and thought to myself that he looked really sad. I looked at my mom and said to her "they are sad aren't they?"
My son is 18 months old my daughter is 4 years old, when my daughter was 18 months old she was bouncing of walls, spunky, very energetic and still is. My son seems to not have this spunk and energy that my daughter has. What is going on here? I try and keep him and her happy all the time but it seems like I can't keep either one of them happy anymore. My daughter has became so whiney and so smart mouthed towards me that I can't control it, or maybe I just don't know how. My son won't let me go for 2 minutes without hollering for me. Has my husbands being in jail affected my son so much that he has to be on my hip at every minute? Is my daughter blaming me for his being in jail and taking it out on me by being lippy with me?

I honestly thought that my son would be okay during this whole ordeal but I am beginning to worry. What is it going to be like when my husband gets home? Is my son not going to have anything to do with him? Is my daughter going to be pissed off at him and not have anything to do with him either? Is 30 days going to traumatize my children ? Has it already?????? I am so full of questions tonight (I should say morning) that I know can not be answered. I just needed to get them out.

I believe my health is getting better, either that or I am so busy that I don't even notice it. I do have a few new symptoms from this sarcoidosis, althought I think that this is just from the steroids. I think I have roid rage! I get so pissed off at times I could pick the TV up and throw it out the wondow (don't worry I can control this temper.....anti-depressants, nerve pills). I sweat all day long and I know I probably look like the stay puff marshmallow man from ghostbusters. I have been getting bad leg cramps and charlie horses that wake me up in the middle of the night just about every other hour on the dot. These hurt really BAD! Anyway, I will not let this disease overcome me. My babies need me more than anything right now, so I take my medicine as prescribed everyday and will continue to do so for my babies (and myself).

Only a life lived for others is worth living.-Albert Einstein

BUSY AS A BEAVER

2007-07-04T22:02:00.001-04:00

I have been busy as a beaver. I love my babies and would not give anything in the world for them but, damn...... I am tired. My boy has really clung on since his daddy has been in jail. I think he feels like if I leave I aint gonna come back for a while, so I have been giving him lots and lots of attention. My daughter... I think is just scared that her daddy isn't going to come back, but we have been marking the calendar and I have been reassuring her that he will be back. She did get to talk to him on the phone. Tuesday I had such a busy day I went and saw him at the jail. I took my kids both to the doctor. I went to file for K-tap (more government assistance)and dropped my daughter off at my aunts, so that she could have a sleepover with her cousins.

The Jail Visit

I went in with the attitude of a very disappointed, mad wife that was going to just let him have it. Well, I sort of did I don't know if anything I said sunk in or if anything I said really mattered because what matters right now are my babies. He walks in the room in a very becoming orange jumpsuit (his color all the way!) Immediately he starts crying. Damnit! that was not what I wanted to see or hear! Of course he's in jail he is gonna tell me everything I want to hear. He is going to feel sorry for hisself. He is going to cry and want sympathy. I have been in this situation before I will not let him rattle me or make me feel sorry for him. It has happened, he did this to himself but most importantly he did this to my babies!!!!!!! I will work through this. I am a good mother and I believe I am just now realizing how much of a good mother I am. I do now realize I don't need a man to raise babies it helps but I have had fun, my kids are clinging on to me and I am keeping them happy. My mama has helped me tremendously but basically I think she is trying to stand back a little and show me that I can do this on my own she lets me do it my way and I think it is working. Right now kids are in bed they have both had baths, both ate a good supper and usually at this time me and my hubby would just now be getting them ready for bed.
My Health

I went back to my doctor he says that the palpitations I was experiencing were anxiety attacks. He told me that sarcoidosis doesn't cause pain. He told me to double up on anxiety medicine and rest plllllppppppt. I have found a friend online here and we e-mail. She has set me up with a dr. in Lex. Ky that has some background with sarcoid YAY! I will keep you updated on that.

MOM

I am sorry I was late in your car I rushed home to get you the car. When I got to N*** A**** was asleep. I packed him in and let him sleep for 15-20 minutes (he was wore out and hot)I know I should've come straight home, but when I get around N** and everyone we like to visit and chat and it is hard to get away. It is also hard with two kids and managing time. I am sure that you already know this. I was never good with curfew growing up. I guess, I still aint! I will do better. Thank you for helping me so much! I really wish I had some way of showing you how much I am thankful but I am better at expressing that type of stuff written than spoken. This may change.... this miracle drug I am on- is starting to make a difference. I think I am becoming the old me! I hope so cause' I miss her!

Well I am tired. I will try and post again tomorrow. It is harder now to blog, I have less time I am a single mom for a month and I am going to make the best of it.
Good night all

JAIL BIRD

2007-06-28T14:12:00.000-04:00

I went to doctor yesterday not feeling well- pain in my arms, legs and chest, under my ribs,vomiting, and diarhea the usual. He told me that I was having anxiety attacks that were causing the pain that sarcoidosis doesn't cause pain ( can you believe that !!!!?) to up my dose of xanax, gave me some phenergren and some more anti-biotics. ALSO to stay away from all stress . HAHAHAaaaaaa, in this family that is all there is stress stress and more stress. He told me to go home and rest myself until Friday and if I was still having this symptoms he wanted to see me again. I have gotta find another doctor that knows a little about this disease at least a little more than he does the pain I am having I really don't think is anxiety attacks (maybe a little to do with it but nope).

STRESS WILL NEVER END!!!!! My brother had to come and visit last night him and his wife had a domestic dispute so he stayed the night with us. His wife called my mother and told her that he had locked hisself in his house and tried to kill hisself --a total lie. He had already left by the time she called. So he is here resting with us which is good he needs to get away from that hell whole were he lives. ALSO my husband was on 2 years probation for posession of marijuana he had to take monthly tests so they would know he was clean. Well, his very first test he failed! So we had to go to court this morning over his stupidity. We figured that they would possibly up his probation a year or so-nope, took him straight to jail 30 days, so much for resting and staying away from stress. I told my daughter that he was away at work and that he wouldn't be home at night. She said GOOD I need new shoes for school when he gets home he will have money and buy me some. She has been asking me if he is going to call and tell her good night. I told her he would if he remembers and if he will if he isn't to tired to call because he will be working hard. I am tired , wore out I don't know how much more my body can handle! I feel like I am fixing to shut down.I am so tired of crying and so tired of constantly worrying about everyone else right now I have gotta get myself better first. I will right more later I can't talk about anything else right now it is making me mad to think about my husband.

2007-06-27T01:08:00.000-04:00

Okay, I am trying to not go really mushy on everyone, but I have been reading poems of inspiration. I read these two poems and thought about my aunt and uncle. I hope you all read them, maybe they will give you some inspiration like they did me.

When you're lost in the wild and you're scared as a child, And death looks you bang in the eye; And you're sore as a boil, it's according to Hoyle To cock your revolver and die. But the code of a man says fight all you can, And self-dissolution is barred; In hunger and woe, oh it's easy to blow-- It's the hell served for breakfast that's hard.
You're sick of the game? Well now, that's a shame! You're young and you're brave and you're bright. You've had a raw deal, I know, but don't squeal. Buck up, do your damnedest and fight! It's the plugging away that will win you the day, So don't be a piker, old pard; Just draw on your grit; it's so easy to quit-- It's the keeping your chin up that's hard. It's easy to cry that you're beaten and die, It's easy to crawfish and crawl, But to fight and to fight when hope's out of sight, Why, that's the best game of them all. And though you come out of each grueling bout, All broken and beaten and scarred-- Just have one more try. It's dead easy to die, It's the keeping on living that's hard. Robert W. Service

J maybe this will help you with understanding how us women in this family work. We will stick with our men through thick and thin. We hold on to what we want.

As the tide went out she found him Lashed to a spar of Despair, The wreck of his Ship around him-- The wreck of his Dreams in the air; Found him and loved him and gathered The soul of him close to her heart-- The soul that had sailed an uncharted sea, The soul that had sought to win and be free-- The soul of which she was part! And there in the dusk she cried to the man, 'Win your battle--you can, you can!'
Broken by Fate, unrelenting, Scarred by the lashings of Chance; Bitter his heart--unrepenting-- Hardened by Circumstance; Shadowed by Failure ever, Cursing, he would have died, But the touch of her hand, her strong warm hand, And her love of his soul, took full command, Just at the turn of the tide! Standing beside him, filled with trust, 'Win!' she whispered, 'you must, you must!' Helping and loving and guiding, Urging when that were best, Holding her fears in hiding Deep in her quiet breast; This is the woman who kept him True to his standards lost, When, tossed in the storm and stress of strife, He thought himself through with the game of life
And ready to pay the cost. Watching and guarding, whispering still, 'Win you can--and you will, you will!'
This is the story of ages, This is the Woman's way; Wiser than seers or sages, Lifting us day by day; Facing all things with a courage Nothing can daunt or dim, Treading Life's path, wherever it leads-- Lined with flowers or choked with weeds, But ever with him--with him! Guidon--comrade--golden spur-- The men who win are helped by her!
Somewhere she waits, strong in belief, you in her firm, white hands: Thank well the gods, when she's with you--the Woman Who Understands! Everard Jack Appleton

That sucks, sucks, sucks !

2007-06-26T18:48:00.000-04:00

I read my aunts blog and found out that my uncle has relapsed. He is a good man that I know loves his children and loves his wife. He also loves his drink, smoke and an occasional pill. I feel bad for my aunt and my cousins. They deserve the best life that's out there. My aunt is a church going, independant woman with a wonderful job, has her own home and is one of the best mothers that you could ever meet. My aunt has given him several chances now that he fully deserved (or she wouldn't have give them to him, she's a smart woman). In my eyes everyone deserves to be given second chances especially when children are involved... or do they? I feel bad that my aunt is in the situation that she is in and my uncle also. I wish there was something that I could do, if there is I will try. I just want to remind them both that they are loved. If you need us we will do our darndest to be there. If you need us to stay outta the way, we will do that also.

To J.

If you think you are beaten, you are.

If you think you dare not, you don't.

If you'd like to win but think you can't,

It's almost certain you won't.

Life's battles don't always go

To the stronger or faster man,

But sooner or later,

the man who wins

Is the man who thinks he can.

By - Walter D. Wintle

THANK YOU ALL

2007-06-25T19:04:00.000-04:00

I want everyone to know how much I appreciate your comments, advice and just all around good, caring, hearts of the people that I have had discussions with on FSR and here on my blog. It means the world to me! I can not express in words how much it means to have friends to talk to. I went to my doctor today and found out alot I think I have found a good doctor. So if anyone needs a doctor in Kentucky let me know and I will be happy to give you his name and contact info. He is taking me from 40 mg of prednisone to 20 mgs for one month then slowly tapering me off. Yippeeee! He told me in one month he will do another ct w/contrast and blood work to check on my lungs and my thyroid. He also put me on an anti-depressant and some anxiety med. He says that I am having uncontrolable panic attacks. He is also going to do other tests to make sure the sarc isn't anywhere else. So I have had a good day, especially after logging on to the site and reading the wonderful comments that I have received. I will keep you posted on everything and again...... Thank you all so much! I will keep my head up! I will survive every obstacle I face for myself and my babies.
I am tired I will write more in depth later about what I found out today

Tomorrow is the big day!

2007-06-24T22:48:00.001-04:00

Tomorrow is the big day! I go see my pulminologist and I have a half full page of questions for him and a half full page of tests I want ran on myself. I want answers and if he can't give them to me I will have to go to someone else and get them. I am ready to do this the right way. I have gotta get myself better for my babies and my family.

I have had a wonderful weekend my mother treated me to an afternoon of shopping that has made me feel girly again. It also took alot of things of my mind and got me out of the house for a bit,which is always good. I am so grateful to have a mother like the one I have and grateful to have a family like the one I have. My aunt has a prayer on her blog and when I read it it made me sitback and say WoW! I wanna share it with everyone.

Mothers prayer

I need your help today.

I want to care

for those you've sent into my life,

to help them develop the special gifts

you've given them.
But I also want to free them

to follow their own paths

and to bring their loving wisdom

to the world.
Help me

to embrace them without clutching,

to support them without suffocating,

to correct them without crushing.
And help me

to live joyfully and playfully, myself,

so they can see your life in me

and find their way to you.

Amen.

This says it all.

BIG STINKY SLIMY DOG TERD

2007-06-22T23:12:00.000-04:00

Today has been an awful day!
I feel like a big, stinky, slimy dog terd sitting in the yard right in the spot that everyone walks and just happens to look down. Yep that's me big ugly dog terd! I have gained over 20 pounds since moving in with my mom. I weighed 169 when I moved in now i weigh 190. Thank you creator for creating steroids! I walk around in sweat pants and over size shirts so that maybe no one will see a fat roll or two. I have a screwed up hair cut that I have to pull back with a head band because it will not do anything else. I have hairs growing out of my chin that I have to freaking shave with a ladies razor about 3 times a month or else I'd look like the bearded lady in a circus. I went from having little self esteem when I was in my teens to having alot of self esteem in my early twenties to having absolutely none now. I guess I have to except the fact that I will never weigh 120 again and that I will be overweight the rest of my life and on a krap load of medicine forever. I guess this is just one of the perks of having this damn disease. I don't feel pretty anymore. I wanna be my old self again but I have lost that person. I don't know if I will find her again. I wanna be able to do the things I used to do. I can't play with my children when I want because I am so tired or so sick. I feel like I am taking away from my childrens lives because I am sick. This is the worst feeling I have had yet. I have wanted to cry all day.

I think I will cry.

2007-06-21T22:12:00.000-04:00

Tonight I have been reading and researching about the disease sarcoidosis. I found a really cool discussion board and blog that people go on to talk about what is ailing them and to chat with others for advice. I have joined the website and am now a member. I think that it has alreaady started helping me with some of my ailments that I am having. I believe getting it off my chest with people that know a lot about the disease is really going to help me. Also they have made a discussion board on Oprah's website on how they are wanting her help in the awareness of the disease since it is so unheard of. Please if you have read my blog or are really just curious about the disease sarcoidosis join the message board on Oprah's website and post a comment. If enough people show an interest maybe someone will do something to help get some answers out there about sarcoidosis. Here is my first post on the website and on Oprah's discussion board.

I found out that I have sarcoidosis after having my second child. I was told that it was in my lungs and no where else. I was told this without other tests being done. I was told that with some steroids I should be fine. I had no insurance, no job and have been getting assistance from the government ever since my first child. I really wasn't scared at first because I had no idea what the disease consisted of. Then my mother started doing some research and that is when I got scared I thought to myself "Okay I will just do what my pulminologist says and I should be fine". I went every 3 months and had chest x-rays. I took my steroids and didn't gain a lot of weight thankfully. I had my cough syrup that helped with coughing and sleeping and just basically tried to keep my head held high, which is easier said than done! January, 2007- I lost my medical card and was no longer able to get any kind treatment. I had to abruptly come off of the anxiety medicine, depression medicine, steroids - everything. Wheew I was a total basket case from January until last week!
From January until last week I have experienced the following.
Heart -palpitations and what feels like weekening of my heart (slowing down)Anxiety attacks- feels like a heart attack- SCAREY (probably from stopping anxiety medicine so quick and not being weened off of them)Pain- under my ribs, my chest, my lower back, and my left armHeadaches- sometimes they will last up to two weeks (nothing makes them better)Insomnia- 3 hours of sleep a night tops!Cough- mostly at night time Depression- Arghhhhhhhhh !!!! the pain of not knowing what in the world to do about having a disease will drive you to the point of hating everyone and secluding yourself from having a normal life.Fatigue- I am so tired...... so, so, so tired!
Last week I had to make a trip to the hospital with severe chest pain it really wasn't severe, just more scary than anything. I had pain down my left arm and in the center of my chest that went down underneath my ribs and palpitations that lasted up to 2 minutes at a time. The whole episode lasted for about an hour before I got to the hospital. When I got to the hospital they hooked me up to an EKG and shewwww- no heart attack. I was still experiencing the palpitations and pain though so they decided to do testing. They did an x-ray the results showed alot of infection. The doctor couldn't tell which was sarcoid and which was infection. Dr. then decided to do CT scan to find out what was what. The ct scan was awful. I knew i had sarc. but I didn't know how bad. I was told it wasn't bad! that it would go away, well it didn't. It had gotten worse the doctor told me that my lymph nodes were swollen and that the sarc. and infection was pushing or pressing on my heart. I can't remember exactly because of pain medicine and anxiety med. they gave me. They did an ABG... they hurt! It came back with bad results they then decided to admit me and get me started on some antibiotics, pain med, anxiety med, steroids, and some nausea med. I was to have a heart monitor on the entire time I was there and to have a heart echo done. I found out while in the hospital that I am severely allergic to narcotics! I went nuts. I was psychotic. I mean I lost my mind. I was told I had to quit smoking -understandable and I am trying to quit. For some reason that is all I could think about while in the hospital that is all I wanted. I asked for a nicotine patch to help me through this. I finally got one 2 hours before they discharged me! They were giving me dilaudid for pain and atavan for anxiety-together! Which I never want to experience again as long as I live. I was disruptive. I was mean. I was dillusional. All of this took over what was most important to me - getting better and getting answers about my disease. I got the echo done, found out that I have a thyroid problem and talked to their lung specialist who told me to follow up with my pulmonologist. I still don't have the results to the echo and don't understand my problem about my thyroid. I will see my pulmonologist Monday, hopefully he has all my results and can get me through all of this the sane way. Also I wasn't told what my ABG read. I don't even know what they do read. I was told it was awful, so I was admitted maybe someone will comment here on my blog and help me out Does anyone think that sarc. can affect your thyroid gland? What exactly is an ABG test? Should I be tested for sarc. in my entire body?
My name is Amanda and I am so misunderstood.

http://stopsarcoidosis.clinicahealth.com/index.pl
http://www2.oprah.com/index.jhtml

Here's Aiden!

2007-06-19T15:38:00.000-04:00

By now you have seen and heard lots about my daughter and not a whole lot about my son. Well, I just wanted to brag a little bit and show you how wonderful it is to have a 30 pound, 18 month old little boy that can melt your heart with just a little brownie on his face and a grin.

So..... Here's Aiden!

Are you taking care of MY petunias?

2007-06-19T14:15:00.000-04:00

I really have never taken an interest in any kind of flowers or gardening in my entire life. Since we have been staying with my mom I have for some reason wanted to help her take care of her flowers and tomato plants. During the crazy time at the hospital I called my mother one morning wanting her to come and sit with me and I asked her if anyone was taking care of my petunias. They really are very pretty flowers, but I am just not the flowering, gardening kind of person, maybe my mom is rubbing off on me.

That wouldn't be such a bad thing she is good at most everything she does. I figured I would take some pictures of her garden and flowers and show everyone what a green thumb she has.

I guess I now have a favorite kind of flower... petunias! They aren't like everyones favorite roses, tulips or daisys and carnations just simple pretty petunias.

Here are some of her pictures of her gardening .

Rohodendron

Azalea

Sweet Williams

"Hens and Chickens"

???????????

holly hocks

Tomato

Petunias

More petunias

Kara has to be in every picture I take!

Let me deal.....

2007-06-17T00:58:00.001-04:00

I went to the hospital with chest pain and pain in my left arm on Wednesday. I thought I was having the big one. I was scared to death. My mom rushed me to the hospital and they took me straight back and hooked me up to an EKG - which was NORMAL (shew!!! big relief )they put me in a bed and I waited and waited and waited. I waited to see the doctor over an hour and a half. Finally the doctor came in she was a wonderful woman very smart and gave me the impression she knew exactly what she was talking about. She did, she told me that it was probably anxiety and she felt around on my ribs, she asked me if I had been coughing alot. I told her my problem about sarcoidosis and that I hadn't been able to be treated for about 6 months due to no insurance. She told me I had pulled muscles under my ribs due to coughing. She asked me my pain level and told me she wanted a x-ray. I told her my pain level was about a 3 pretty low, I really wasn't wanting any pain medication I wanted to know what was going on. She then told me she would get me a lortab for pain and some adavan for anxiety. Good no narcotics in the vein. As a person that has been in and out of hospitals alot they seem to like to shoot me up with a bunch of pain medication and send me home and it is always the same pain medicine dilaudid (very strong). I had taken my x-ray and was waiting in my little bed for the Dr. to read them she came in and told me she wanted a ct scan because what she saw she didn't like she couldn't tell which was infection and which was sarcoidosis.

Okay, I got scared first thing I wanted was a cigarette my nerves were working on me double time. From then on things are kind of blurry I remember the ct results coming back and she told me that my lungs were swolen and the infection was pressing on my heart WHOA!!! nerves again I wasn't scared now I was to the point to where I was fearful of losing my life. Yet I stil wanted a damn cigarette. She wanted an ABG - those things hurt! I have had them before, I don't know if it was lortab mixed with anxiety medicine or just plain being afraid out of my wits but I was trying to bargain with the doctors!!!!!! Everything is a little blurry but I remember wanting a cigarette before and after the test, well it wasn't happening so I calmed down. They then ran an IV on me and shot me up with adavan which I have never had in the vein before and never want again. She came back in and told me my ABG results were bad I am not sure what it read everything is very blurry.

She wanted to admit me start me on medications right away. Okay I started crying was scared, nerves again I wanted another cigarette, what in the hell is it with cigarettes ? My mom left it was very late. I told her to send my husband I didn't wanna be alone. I remember I called him on the phone and told him to bring me a few things. He got to the hospital and went up to my room with me and I remember asking him were my stuff was at and he told me that he left it in the car. I remember a young nurse coming in to my room to hook me up to a portable heart monitor that I would have to wear my entire stay which meant no cigarette for me so I told her to wait that I was going to go down and help my husband get my stuff and smoke I would let her know at the nurses station when I got back. I went outside and smoked got my stuff felt a little better was ready to go back in and rest. We got back and I went to tell her that I was back and she was talking to another nurse rolling her eyes saying " I don't know she went outside with her husband, she said she didn't want to make him have to pack all her stuff by himself " I politely said "ahem, I'm sorry I was under the impression that everything was fine when I left" She turned around and looked at me "Oh I'm sorry that is just the way I talk. Don't pay no attention to me".

I think that is when it all began I got angry.

I don't know why, no reason really.... I guess withdrawals from cigarettes. Is that possible? Hell, I had smoked plenty before I got to the hospital. Anyway, I was in my room and a different nurse came in to my room and hooked me up to my heart monitor. She then asked me my pain level I said a 4 or 5 still low on pain scale. I thought if anything she would bring me another lortab or give me something non-narcotic like tramadol . She left came back in my room and said I have something here for pain nausea and your nerves . I asked her what and she said Phenegren, adavan and dilaudid. I immediately looked over to my husband who was already fixing to leave because it was a shared room no one was allowed to sleep in the room with me. He said I'm going home. I knew why he was going home Dilaudid and me equals INSANE.

I should've spoke up and said NO. I thought, well I will let her give it to me it is late and maybe it will put me to sleep. Wrong again, I went crazy.... immediately I was wired. The next morning I called my mother and asked her to come to the hospital it was early in the morning not sure of times I was out of it. She said she wasn't going to work and she would be there in a little while. I saw the doctor that day and was even trying to bargain with him so that I could smoke a cigarette. I was crazy! I smoked in the bathroom, I yanked my IV out of my arm, screamed at my mother like a 4 year old, and even screamed at the lady in the bed next to me. I was acting like a junkie wanting my next hit. All over a cigarette.

I can not apologize enough to my mother I am so sorry, I don't know what in the hell I could have possibly been thinking! So the entire family is mad at me as if I don't have enough on my mind already. I understand they care and I understand they want me better. I have a lot on my mind I need to get through these feelings with my immediate family... my mama, my husband and my kids. I am not pushing anyone away but all I do is worry, stress and cry over what everyone is thinking of me. I am weak I have been weak for a very long time now. If you wanna call and talk about the weather that would be the best medicine for me right now, not about how I am feeling and not about how we are doing in our private life. I used to be thought of as the strong one.. nope not anymore I am weak and I need the people around me-no one else.

Please let me get myself and my private life better and then if you wanna talk about what I have done wrong while doing this then I will be all for it, but right now I know what I have done wrong.

I am dealing with it- please let me.

From now on I will be working on getting myself and my family back on the right path if you have some good advice for that I will be happy to listen. If it has anything to do with my health or my private life - don't ask I won't tell.

If mama wants to talk that's fine that is her right, however I am done talking.

I love all of you.
Thank you for letting me deal with this the way I feel I need to.

Do you like it ?

2007-06-07T16:59:00.000-04:00

Yesterday I was laying my 17 month old son down for a nap while my daughter was watching Chicken Little (making very little noise). I hear a whisper maama, maama. I turn around and look to see what she was doing, and she was striking a pose.

I mean hand on the hip, sticking her little butt up in the air and posing for an invisible camera. I didn't notice anything at first. I just thought she was trying to show me her shorts that she had on because she is always changing her clothes.

All of a sudden I look up at her hair and Awwwwwwwwwwwww!!!!! I gasped loudly and almost woke my son up. She cut her bangs about a quarter inch from her scalp! About three fingers off of her forehead is practically shaved. I didn't know what to do or what to say to her. I just calmly said "Oh K***, Why?" She said "What? I had to get my eyes out of my bangs" I couldn't say a word because I had asked her the night before if she would let me cut her bangs and she told me maybe tomorrow. So this was probably my fault, I was the one that put the idea into her head. She asked me if I liked it, I said "Wellll, Do you ?" She said yep.

I then asked her if she wanted to get the back of

her hair cut like the front. She told me no, so we looked up short haircuts on the Internet. She saw one that she liked it was a pixie haircut that was really, really short. I took her to the salon and the beautician talked me out of letting her get it cut that short. I told the woman just to do the best that she could with the mess. K*** sit stiller than I have ever seen her sit. I was proud of her (of course I would sit still too if my hair looked the way hers did).

I figure I will take pictures and save them either for blackmail or just a really, really good laugh one day. I am sure that her kids will love to see what their mommy did to her hair when she was four years old.

Here is her new haircut. Yeah she's still posing!

SARCOIDS

2007-06-06T09:04:00.000-04:00

I am so sick and tired of being sick and tired!!!

I found out that I have a disease in my lungs. I had my son on January 15, 2006 the whole time I was pregnant I was one sick puppy. Anything that you could imagine - I had wrong with me. Everything from having problems with my heart to having psychological problems. After I had my son it seemed like everything just stopped and I was better. Then I got this horrible dry cough that lasted longer than 2 months. I had a medical card at the time and had to go to the Dr. that they chose, so I went to him and I thought to my self "boy is this man a quack or what??" He sent me for testing that I had never even heard of before. He put me on inhalers and cough syrup and allergy medicine and none of it worked, so he referred me to a lung specialist. I went to the specialist and he sent me for an x-ray and a ct scan of my lungs and found some type of scarring on my lungs and decided to do a biopsy, "which wasn't fun!" He later called me into his office and told me I had sarcoidosis.

Sarcoidosis
Sarcoidosis is an inflammatory disease. It starts as tiny, grain-like lumps called granulomas, which most often appear in your lungs or lymph nodes. They can clump together and form larger lumps that attack other organs. Sarcoidosis often affects your skin, eyes or liver.
Sarcoidosis may be mild, or it can be severe and do lasting damage. It does not always cause symptoms, so you can have it without knowing it. Symptoms vary, depending on which organs are affected.
No one is sure what causes sarcoidosis. It affects men and women of all ages and races worldwide. However, it occurs mostly in people ages 20 to 40, African Americans, especially women, and people of Asian, German, Irish, Puerto Rican and Scandinavian origin.

I couldn't believe it, I was shocked and very very scared. My immediate thought was that I was gonna die. The doctor assured me that if I took the medicine correctly I would be fine. Yuck, steroids, cough syrup, inhaler, breathing machine, pain medicine because of the pain in my rib cage from coughing, anti-anxiety medicine, and anti depressants. I was a walking pharmacy. All of this medicine was really expensive! Thank god I had a medical card, because we wouldn't be able to afford them. So I took my medicine faithfully and went every 3 months and had x-rays then my medical card expired and now I can't get another one because I am married. So I haven't taken my medicine for probably 6 months or longer. I am really just now starting to feel the difference. Me and my husband have been job hunting and don't have a vehicle so we have been walking everywhere looking for jobs. The other day we walked to a staffing agency 2 blocks away and across a highway. I couldn't breathe and I almost passed out, I think that was really when my husband realized that I was sick. He then tells me that I need to file for disability or work from home, that if I did get a job I wouldn't be able to work long that I couldn't even walk across the road.

I am really depressed about this and don't really know all there is about the disease. I have done search after search on the Internet and just find the same stuff.

General symptoms caused by the disease include fever, tiredness or fatigue, weight loss, night sweats and an overall feeling of ill health. Other symptoms typically depend on which organs the disease affects.

Lungs: The lungs are the most commonly affected organ in sarcoidosis. Ninety percent or more of people with sarcoidosis have lung involvement, whether they have symptoms or not. Common lung symptoms are dry coughing, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort and coughing up blood, which is rare, especially in the early stages of sarcoidosis.

I kept quiet to everyone about how I felt I don't want anyone to think that I am milking my disease and trying to get sympathy. I no longer can hold it back I am sick, I know I am sick and I am sick and tired of being sick and tired!!!

My mom told me about a job where you can work from home and stuff envelopes and mail them out. I thought about trying something like that for a little while it would be extra money and we wouldn't have to come up with a way to pay a babysitter. I am also going to try and file for disability, the way I feel right now I don't think I could do anything, watching the kids and keeping up with them is even hard on me.

Maw

2007-06-05T09:58:00.000-04:00

I was angry as a child, a teenager, and angry in most of my twenties. I was not angry because of you. I do not blame you. I have never blamed you. I blame him, he is the cause of all of my rage. I want to thank you ! Thank you mama for holding us together as long as you did, because if you hadn't have held on we wouldn't have seen his true side and seen what kind of a devil he really is.
I LOVE YOU !
Now we can hold on to each other!

This should make you smile.

2007-06-04T21:36:00.000-04:00

I read this earlier and wanted to share it with everyone. I hope you find it as funny as I did.

To those of us who have children in our lives, whether they are our own, grandchildren, nieces, nephews, or students... here is something to make you chuckle. Whenever your children are out of control, you can take comfort from the thought that even God's omnipotence did not extend to His own children.

After creating heaven and earth, God created Adam and Eve. And the first thing he said was "DON'T!" "Don't what?" Adam replied. "Don't eat the forbidden fruit." God said. "Forbidden fruit? We have forbidden fruit? Hey Eve..we have forbidden fruit!" "No Way!" "Yes way!" "Do NOT eat the fruit! " said God. "Why?" "Because I am your Father and I said so! " God replied, wondering why He hadn't stopped creation after making the elephants. A few minutes later, God saw His children having an apple break and He was ticked! "Didn't I tell you not to eat the fruit? " God asked. "Uh huh," Adam replied. "Then why did you? " said the Father. "I don't know," said Eve. "She started it! " Adam said. "Did not! " "Did too! " "DID NOT! " Having had it with the two of them, God's punishment was that Adam and Eve should have children of their own.

Thus the pattern was set and it has never changed. BUT THERE IS REASSURANCE IN THE STORY! If you have persistently and lovingly tried to give children wisdom and they haven't taken it, don't be hard on yourself. If God had trouble raising children, what makes you think it would be a piece of cake for you?

THINGS TO THINK ABOUT!

1.You spend the first two years of their life teaching them to walk and talk. Then you spend the next sixteen telling them to sit down and shut up.
2. Grandchildren are God's reward for not killing your own children.
3. Mothers of teens now know why some animals eat their young.
4. Children seldom misquote you. In fact, they usually repeat word for word what you shouldn't have said.
5. The main purpose of holding children's parties is to remind yourself that there are children more awful than your own.
6. We childproofed our homes, but they are still getting in.

ADVICE FOR THE DAY: Be nice to your kids. They will choose your nursing home one day. AND FINALLY: IF YOU HAVE A LOT OF TENSION AND YOU GET A HEADACHE, DO WHAT IT SAYS ON THE ASPIRIN BOTTLE: "TAKE TWO ASPIRIN" AND "KEEP AWAY FROM CHILDREN"!!!!!

A little about ME-unlucky in kentucky

2007-05-30T00:56:00.000-04:00

Hello Bloggers!!!!

I am completely new at this! (any comments, tips, ideas, questions will be totally appreciated!)

I am a 28 year old mother of 2, married and living with my mother. You are probably wondering why, well it is one hell of a long story and I am sure that I'll get into that in my upcoming posts. I hear that blogging is the #1 stress reliever in my family, so I thought I would give it a try. My mother blogs, my aunt blogs, my uncle blogs and now I blog. I have two beautiful children, a 4 year old girl and a 16 month old boy. I am sitting here wanting to type something exciting about myself, but I really can't think of anything. I like to watch movies and I like listening to music. The only thing in my life exciting right now is how screwed up it is. I am jobless, my husband is jobless, we have no vehicle, I disowned my father last week , I live with my mother and I have a lung disease (that I don't talk about even when I am sick).

I met my husband in my home town of Lawrenceburg, starting out we had several ups and downs. He was a wonderful person, no one had ever treated me the way he did. He was charming, sweet, kind, loving and he made me feel good about myself. I just knew that he was the one, my soul mate. Me and my husband got married in April 2002. I was 5 months pregnant. We lived with my mother starting out. He worked at a job here in Lexington remodeling homes that had been burnt in fires or damaged by natural disasters. I didn't have a job, just small ones here and there. We got government assistance and moved back to our hometown of Lawrenceburg and that is when it all began, T-R-O-U-B-L-E. He worked at several small construction companies building houses. Around November of 2003 he got a job for a log home company building them. It was a good job, it was just what he had been looking for.

He was fixing to become lead man and have his own crew. In January I went and got a small loan so that we could get some bills caught up and get everything going on the right track. The day I went and got the loan I got a phone call from my uncle, at the time my uncle had been working with him. He told me that I needed to get to University of Louisville hospital quick. He told me that R***** had shot himself with a nailgun. I asked my uncle where he shot himself and all he would say was "get up here". Finally my uncle told me he shot hisself in the chest. I knew immediately that this wasn't going to be good at all. It felt like someone had hit me in the stomach and knocked the breath out of me. I was nauseated, I thought I was going to pass out. My mother in law drove us to the hospital and when we got there R***** was just getting out of surgery. I asked why he was in surgery and they said that the nail had hit his heart! They had to do open heart surgery and remove the nail, he was going to make it. Since then things have not been the same at all.

Our lives have been one big revolting, pile of horse krap ever since.

I can say things are starting to get better. Although it seems like i say that everytime it isn't getting better. You know, I can walk through a field and find 15 four leaf clovers but I can't find the right direction to take in my life. I am NOT looking for hand outs. I am not looking for sympathy. I am looking for a way to take care of my children without the help from the government and family members.

So this is DAY 1 in that journey and I would like to invite you on it with me.