I need prayer!

[lostinlouisville]

Sorry to bother you good people, but I am here because of that very reason. You good people. Well, since my emg last week, things are really hard. My left leg shakes bad while walking down the stairs. I am out of breath all the time and the pain in my left shoulder is horrible. The doctor notices some atrophy in right hand and foot. Yesterday I noticed either my left shoulder is swollen or my right one is gone? Today I was scheduled for an MRI of the spine, the doctor really feels I need this, so I was getting ready to go this morning at 8:30 when the doctors office called and said they have been arguing with insurance co. for approval. They say this might take a few days? So frustrating when your trying hard to find answers. It feels like I just now got my nuero on board and he finally taking this thing seriously, now the insurance co. Oh well I guess I am done whining. Sometimes I need to vent. Thank you all for letting this be a safe place to do so.

[patricia1]

I really feel for you. Hang in there Ill be praying for you. I remember that waiting game its horrible.

Peace Pat 1

[awieleba]

Hi Renee,

I am sorry about all this. You know that you are in my prayers!
It can be so frustrating! The testing and not knowing and all the while you feel like your body is betraying you.

How long have you been feeling this bad? My thigh's were shaking for months. when i was planting flowers and leaning over, they would shake. when I tried to see if I could do the same yogo poses, they would shake after 5 seconds! I feel your pain. I just wanted to tell you that I did hava a good weekend with only a little twitching and pain.
I ran errands all day, the first time in a long time and the main problem was my left leg, it does not shake as much as it was. It was just stiff, and I felt like I was walking funny. I am telling you this because 2 weeks ago I could not do this. Just walking at the pool last week my legs felt like jello, I was so nervous. Maybe your leg will feel better soon. It kinda comes and go's for me. I am sure i will be back to the shaking soon, I am just going with it today.

I had the spine Mri last week and I am picking the test and results today. I can look at the result before my doctor. so i will post what it says.....I am not holding my breath.

I will pray for you and your family. I pray for everyone on this site. the folks here are amazing and caring.

god bless

april

[lostinlouisville]

Thanks for the reply, I appreciate the prayer. My legs have been weak and hurting climbing the steps for a month or so. The shaking is new, days . I took my kids to CHUCKY CHEESE yesterday, but can no longer do this without help, thanks to my son's girlfriend, she helps me so much with the small kids. I and my family have noticed personality changes in me. I used to be so cheerful and the one that could do everything. I never expected any help, now get frustrated with my large family and my poor husband when I feel they need something I have fell behind on. I gave him what for yesterday when he washed his own jeans and work shirts not because he did it because I didn't.Sounds kind of silly doesn't it. I am just feeling like I don't belong here with them, not because I don't love them because I can't do for them like I use to. Just rambling, sorry. Thanks for the prayers and I will try to pick myself up today. I like living my life more optimistic. There is a quote I got the other day I loved. It said."live your life in a way that when you wake up in the Morning the devil says 'Oh crap, she's awake." I Thought I need to be that women again.

[awieleba]

hey-

funny about your husband. the same thing happen to me last week. I had a busy day with the kids and could not get the baby to sleep, just a long day. well, there were dishes in the sink ( i never let them sit there, that is my pet peeve, the house can be trashed but the kitchen must be clean) for a day. Well, my husband worked and then went golfing and got home at 11:15. the boys were still awake and he yelled at them "why are not asleep?" then proceeded to do the dishes (he never does this, at night after long day). I was half mad and half sad. I felt he was doing it to spite me. (see, I worked and golfed and still did the dishes) I felt guilty that I cant keep up the way I use to around the house.:cry:
WELL, I called my mom and sister to get there opinion on the matter. ( I have been known to over react). they said "oh- no -he -didnt!!!!" and I said "oh -yea -he -did". they said I dont care if you are sick or not, you have 3 young kids on summer vacation, he should not say or do a peep! (mind you my hubby is wonderful and my family loves him)
so I said "your right". I made a sign that read "OFF DUTY, for lack of appreciation for what I do. I will not lift a finger other than love my kids", I made sure that the house was trashed-dishes everywhere, bottles, toys, you name it. Taped my sign on the kitchen wall. Then dropped the kids off at my moms, went to dinner with sisters so when he got home with kids he would see what happens if i really did not do a thing!!!! Well he got the point, he wasnt that amused. we had a talk and I expressed my feelings of guilt. I want to do more, it just gets hard when you are the jello lady. he understood and we had a laugh over my over reaction. it was a bit much and back fired on me when the neighbors were over the next day while kids on waterslide. They asked to use the bathroom, I said no way, my house is trashed. You gotto go home to pee! Then explained what I did and there may be a new trend of "off duty" in my sub as the ladies thought it was a good idea.

anyway, just a little slice of humor. ps. my husband 3 years ago asked me why I dont do his laundry like his mom does......yes, you heard me. mind you I was working p/t and had the 2 young boys. Well, I stopped doing his laundry for 1 year and told him to call his mom. It sounds like its mean, mind you we are BEST friends, and he does appreciate my sense of humor. but his mom and 2 sisters did everything for him prior to me. so he needs a dose of reality every now and again. he was babied! lucky me!
needless to say he did not marry me for my domestic abilty.

Never feel bad about what you cant keep up with! the only thing that matters is loving and playing with your kids! who cares about the rest, the kids wont remeber. I feel like if things are going to get worse for me, i want to take this time and just have fun w/family and not stress about house or laundry....know what I mean?

well, sorry to blab.....just want to cheer you up.

wish me physical luck & strength...I have to take kids to target, party city, drs, and then go to a t-ball game in 95 degree heat! I am not sure how this will all go!

god bless you!

april

[crystalkk]

Lost,

We are hear for you and understand, my legs shake also. Your personality didn't really change, you are
just not used to needing help and are very scared about your symtoms.....I get the same way. It is so scary and frustrating. Aniexty make things ten times worst. We are women and are used to being in control and handling everything ourselves. Hopefully they will get everything straightened out with you insurance co
and you can get your MRI soon.

Hang in there,

[awieleba]

Well, I think it is my turn for the need of a prayer.

I started the day in a good mood (hence my story to try to cheer you up). I feel really defeated. I picked up my results of the spine mri. the were normal, I thought they would be. I just hoped that there would be somthing on there to explain my leg. I kinda knew deep down that a pinched nerve would not cause problems everywhere. (my hands as well as legs). I guess, I feel the way i always do after you get a test result that is fine. You are glad in one way and more confused in anther. I feel like just giving up on going to doctor. it seems so pointless. the more things that are normal make me feel more nervous that it is a mnd.

I dont even feel like going to sons t ball, but what point would that serve. I will go sit with the other moms and pretend that everything is fine. What else can you say with out looking like a fool or scaring people half to death. I feel very down:(

sorry, to just un-load like that. I feel frustrated also. The twiching is better BUT I still am weak, lost my voice 2x in a month, i have problems taking a deep breath in, my thighs shake, can hardly hold my baby, my hands feel weak when using them in kitchen and they look wrinkled up from loss of muscle, when i walk my leg feels so stiff i feel like i am limping or shuffling. but, i know according to the neuro I am just fine.

Sorry again, I think i better get off line when I am in this type of mood. It really is not good for anyone, plus gotto go to tball and pretend that "hi, yeah -I am great!":(

pray I'll feel better tomorrow.

april

[lostinlouisville]

Sorry the good mood could not carry through the day. I will pray for you to have answers too. I know the wait and wondering can be hard. Sorry to go on and on this morning but I took your advice and left my house work behind today and took my kids to my older sons house who has a huge built in pool and we swam and played for 4 hrs. I don't know how long it's been since I did something like that. They really enjoyed it and so did I.So tomorrow I want you to take a day off from your house and your worries and have fun with your kids, not run errands fun I mean lay by the pool fun. Do it. Thanks for making me feel normal with your husband story. I don't feel as bad now. Even though I think he did marry me for my domestic abilities.

[crystalkk]

April,

I sorry your MRI came back normal, I know exactly how you feel. People think you should be happy when tests come back normal. But thats not the case we want something to be wrong that is treatable. If I told people
that I even wished for an abnormal brain MRI with a operable tumor they would think I was nuts.

I loved your hubby story it really made me laugh. Going to your son's game as down as you are will
help keep your mind off of things. Like lost said do something fun tommorow with your kids.

[rose]

Lost, you're definitely not whining! and we've all been there ~ you're got lots of company! ... the waiting game is horrible, dealing with insurance is frustrating, and it is difficult to not be able to do for others if that is the role we're accustomed to filling.

The fear of the unknown is the worst, and its hard to control that fear from spilling into virtually every area of our lives.

Maybe its an opportunity to relearn what should be our priorities again, and at least temporarily, using what we're able to do, not what we want to be able to do as the guideline.

You'll definitely be in my heart,
(now go get a nice glass of wine, or schedule yourself for a pedicure, you deserve it!) :)

[Sammantha]

Hi, hope you are doing better........... Becareful with your shoulder, dont baby it. When my shoulders acted up i would barely move them and i would get frozen shoulder. A physical therapist showed me excersizes to do when i feel them tensing or aching. I thought she was nuts because she wanted me to rotate them even though they hurt, so now i rotate them and stretch them when they start in. I have not had frozen shoulder in over five years! It really helps. Instead of a week of aching it hurts for maybe two days. Prayer certainly does work, so keep it up and i will keep you and all the others in mine...... I was really off my rocker yesterday and now it is like oh it just another thing that needs to be taken care of, oh well...... Sometimes i wish that we all lived near each other and could talk and give each other support or help, but in essence that is what we do here on this forum.... Best wishes, Sammantha

[brendapals]

OK now girls, let's all put on our big girl panties and deal with it!!!! hahahahaha... I know, easier said than done, but I hope you are laughing out loud right now!


I'm just trying to add a little bit of light humor to our evening!

To Lost and April- it is ALL going to be fine. Yes, we are probably all used to being in control of our families, our budgets, our laundry, our banking, our kids' MD appts, our kids' school supply list, when to change the sheets, when to water the plants, and the list goes on and on and on.........

It is also very hard for me to look at my family and not get the feeling that I don't belong. My feet are killing me right now, but my kids will never know it. They are all 3 watching Avatar on TV, while I sit at the computer. Alas, my feet are resting!

We all pray for each other and thank God for another day-some will be better than others, but I try to remember what my mom used to say from her wheelchair after about 17 yrs with MS " there by the grace of God go I"- I didn't really understand it for a long time, but as I grew older I knew that there were people so much worse off than my mom.

So we must continue to support each other any way we can, and who knows, maybe we'll all get together for a girls' night out when we figure out where we all live! That could be very fun!

Everyone have a great night of rest!
Keep the faith,
brenda

[Darlav]

Hi April,

Sorry your feeling down. I wish your MRI had some answers for you. I think we're the only bunch of people wanting a test to show something wrong! (except for the EMG).

Which reminds me, lets not forget about your clean EMG! Which is a way better marker aginst ALS than having an unremarkable MRI.

Take care.

Darla

[lostinlouisville]

I am feeling better today, thanks for the prayers. My dr. called last night and has my MRI scheduled for today. We will see how that goes, don't know how long it will take to get back.I will just take it one day at a time. I said that like we have a choice how many we take at a time. I hope you all have a great day and fill it with love and kindness.

[crystalkk]

Lost,

Good luck with MRI, and happy to hear you are feeling better today.
What body part are they doing the MRI on?

[awieleba]

Ok,OK,OK.......I really dont know what got into me yesturday. What a baby, I guess my kids are rubbing off on me. It would be nice if could just put one big band aid on my body and feel better like the kids!!!:-D

It is so touching that you all care enough post to me, it really does mean alot to me.
I do feel better today and my hubby put up the water slide for the kids. Renee, I do take the kids to our sub pools, but it is stressful w/o a helper. my older son wants to go in big pool (not that independent in water-he thinks so), my younger Noah wants to stay in little pool, and the baby is darn heavy and teething! Next summer should be alot easier with the young bunch. sooo, water slide today. and we are getting together with friends tonight, so that should take my mind of things.

I do feel bad whining when there are so many wonderful folks on this site that are dx or in worse shape than me. It seems selfish and i am sorry to everyone. I have to stay in the moment, and today I am able to walk about (albiet with weakness and stiff leg--I call me stiffy now.)speaking of this:

Brenda-
once again, you amaze me girl! I want to be like you when I grow up (see, I am still waiting for that to happen, so is my hubby) I feel like I am 36 going on 6. I am going to send you a pm. I have a few questions about the mixed connective tissue and all that other jazz you were being treated for.

Darlay & Crystal
we are the only group of people that want to find an abnormal test. It seems anything were you have a fighting chance is better than the other. It does not seem probable that you can have all this going on it is nothing.

Rose-
this is a chance to learn what we value most. and these times can strengthen our souls.

As I type, I am thankfull to watch my kids. The baby is in the jumber and the boys have all thier webkins set up and having them play a pretend game of baseball with the baby as the cheerleader.....too cute!

Renee-
I am gland you are getting in for the mri. Had mine last friday and I p/u the test yest. (thurs) I am waiting for my neuro to call on the blood work and let me know where to go next. Thanks for being my sis in christ.

I wish you all a great weekend. we have b-day at my sisters, that be fun. so it should be good. If my body can hang in there.

god bless ALL of you,

April

[brendapals]

April,
You are TOOOOOO funny. I've never gotten a pm before-I can hardly wait!

And I tell me all the time that I'm still in school because I don't know what I want to be when I grow up! I figure I'll never grow up, ALS might think I have to grow up, but not quite yet!

Hope you have a great Friday-we'll talk soon,
Keep the faith,
brenda

[brendapals]

Well, that certainly sounds stupid.

What I meant was I tell PEOPLE all the time.

oops,
brenda

[lostinlouisville]

I am going to tell you like I tell my kids "Don't grow up to fast" haha. Did you get the blood test back yet? Let us know when you do. I had my Mri Friday will not get the results till next week. I really am thinking spine problem. If not my dr. says possible a sinal tap next. Just noticed my right shoulder is a lot smaller than my left. My family is becoming concerned watching me waist away, hope they find neck problem. It is funny how we hope for "bad news" from cervical Mri's. All the best to you wonderful ladies, you are great people and I will keep you all in my prayers.

[sdsyd]

Hi there! I hope things are going better by now. Sometimes it really is hard to have a good day!!! I understand and feel much empathy for all of you with kids, medical problems and the people in both worlds: The diagnosed and the Undiagnosed!!!

Sometimes humor is really the best medicine. Right before my problems set in I was preparing to make a career move and be a massage therapist. Dan and I made jokes like " What should I do? Charge extra for the vibration coming from my thumb?? " tell them that all of the studies are wrong- one handed massages are truly better?"
tee hee.

Hang in there guys. I heard somewhere either we all hang together or we all hang seperately!!!!!

Prayers and thoughts for you all.

Cindy

[awieleba]

Cindy,

good luck to you this week on your journey for answers!
keep the sense of humor!

God bless you

april

[MtPockets]

I have enjoyed reading your thread and seeing the love of Jesus in action. God bless you for all that you are doing for one another.

I just wanted to share a couple of threads you may not have run across where Christians are encouraged to share with one another freely. They are the following:

"Christians Here To Help You And Talk" at:
http://www.alsforums.com/forum/showthread.php?p=49253#post49253
and
"Encouragement for Hurting Christians", at:
http://www.alsforums.com/forum/showthread.php?p=38714#post38714

Please jump in with any thoughts you may have. It has been awhile since these threads have been active. If we all join in maybe we can get them going again and share the good news with others.

[Lorie]

I know how you feel. I am going through the same exact thing. I just want you to know that I will be Praying for you too!! Just remember Anxiety and Stress make it worse.

Lorie

[awieleba]

Thank you Lorie!

With all that you have been through as of recent, the fact that you took the time to post to our thread means soooooo much to me! My husband and I have prayed for you and Tim for 2 weeks at church! I just wish you the best! You are a stong lady. I saw your interview (with Tim), you are lovely folks! I cried about the van from Stu!

Blessings!!!!!

April

[lostinlouisville]

Just to repeat what April said. Thank you so much for your kind words during this stressful time in your life. I also have been praying for you and Tim. I get on here everyday to see an update. Stu sounds like a great person and I am so happy he could help you and Tim. I e-mailed him about a fund-raiser, I can not wait to get the ball rolling so many more can be blessed.