Feel like Job..........when are the locusts coming?
 

Oh Erin,

Please please don't apologize for venting, you have nothing to apologize for.
Oh honey, this just ain't fair, and no you arn't being punished for anything. Sometimes stuff just happens, and it always seems to happen all at once at some moments in our life. I'm sorry your Mum had a fall and your Dad was robbed (may the thieves armpits be infested with the fleas of a thousand camels!!!!!)

I really am truly grateful we all can come here at our worst and get a load off our chest, and we each in turn understand, it really helps me I know.

All I can say is I'm thinking of you, sending loads of hugs via the internet (((( ))))),
take care,
Kate
ps not offering any advice as my brain is on sleep mode at the moment!!

To Erini
 

Erin,

I have been thinking that I feel like Job, too. I feel bad to think it since I haven't had the troubles you have been having, since my MG is mostly under "control"..

My hip joints and knees have started to pop out of place, too, a lot so I am limping around and it doesn't feel good, I have never had problems like this! And I have all sorts of issues unrelated to MG that keep happening to me that aren't my fault and it just never stops. I just can't handle all these things, everything is falling apart and I don't know what to do. I think the world is against me and I am starting to believe that it will be my turn to die soon. So I am ranting, but also starting to feel desperate. I really can't deal with all the things that keep happening.

I hope the curse goes away, for you and for me and for everyone that has it. I am starting to get so cynical I don't even want to say too much about how I feel.

There are still positive things in my life and I am hanging on to every single one of them. I need them so badly...

Desertflower,

my grandfather, used to say to us when we were kids-look how resilient are all the desert plants- they have learned to survive with a very small amount of water, and pretty harsh conditions, and still flourish . and you should learn to do the same. always be happy with what you have, learn to use it wisely and try to make the most out of it. you may occasionally have to develop thorns outside, but always stay soft in your core.

he was a "weekend painter" and over my head I have one of his paintings-three relatively small and "weak" trees bending in the wind, and one big and "strong" one on the ground after it broke in the storm.

alice

and Erin,

I actually find Job's story very comforting,
we never know why we suffer, or how long this ordeal will be, but eventually things will get better and those who did not lose their faith in themselves and the world around them eventually have the good life they deserve in one way or the other. and although what has happened will leave some scars, those will graudally heal and slowly be forgotten, as life's good fortunes will take their place.

alice

hi Erin
 

Im so sorry hun that you feel like this.

It never rains but it pours is what we say over here. Or that everything comes in threes. Hopefully you have had all your three and things will start to get better.

Sending lots of love

Rach

you need to make sure that you don't have DVT.
 

Erin,

I just noticed that you mentioned that one of your legs is painful and swollen. did you tell this to your docs?

this could be a sign of deep vein thrombosis and would require anticoagulation ASAP.

alice

So sorry it has been pouring down on you lately. :hug: Hopefully soon you will start to feel better and get to have a good Christmas vacation.

Hey Erin,

I know how you feel...I often feel like I've been cursed too, especially since the illness affects my speech mainly (much like some stories of afflictions that would affect some characters from the bible)...:(

I'm sorry that you're feeling so poorly lately...I hope that load gets lighter soon!:hug:

Nicky

Nicky,

have you tried some speech therapy?
for me it was quite helpful to "learn" how to talk.
I learned to recognize when I better not speak at all, when I should use a very soft voice and speak slowly and when I can speak more normally.
it took a lot of trial and error to learn all of this, but now it never happens to me that people think I am "anxious" or "depressed" or out of my wits, when I talk with them. and no one asks me-where did you come running from? when I pick up the phone. and everyone around me has learned that there are times when I just can't talk and they have to wait patiently until I can.
and I believe that there are some around that are quite happy that I am talking less.;)

alice

Hi Erin,
You surely could have have done without that hip joint problem...
One idea crossed my mind, I've read somewhere that it is the muscles which keep the skeleton together, would it be possible that your problem is caused by muscle weakness or even atrophy?
Take care,
Maurice.

Hey Erin

You posted a few days ago - are things any better? I sure hope at the very least that there is less pain and that the swelling has gone down in that leg.

Have you thought about setting up a consultation appointment in Dallas? Now might be the time to make arrangements for after the Holidays.

On other question - you may have said but I forgot....have they done a bone scan on you (your hips) in the last 30 days? I'd definitely want to know about the osteoporosis angle given the amount and length of time you have been on pred.

Sue

Hi Kate!
 

Hello honey!:hug:

You are so sweet to me! I just love this site!:D

I know I'm not being punished, but I just wonder why things keep cropping up - you are right - that is just life.

I laughed sooooo hard when I read the camel comment! It was FABULOUS!:D You have an amazing sense of humor!:D

How are YOU doing? Your family?

Sending you HUGE hugs and a big thanks!

Love,
Erin:hug:

Hi Rach!
 

Hi Rach!:hug: How are you? Are you feeling stronger? Any new pics of your gorgeous nephew?:D How is Jamie?

It will get better soon - I know it will!

Love,
Erin:hug:

Erin
 

:hug:Erin, :hug:sorry, some how I missed this, and yes, I have felt like Job, and it can feel so frustratiing, and can feel a little bit lonely. Not that the people around don't care, or understand, it's just so overwhelming that it can feel like the Lord has walked away for a second.
He hasn't, and He knows you are sick, and knows how much pain you are in, and He has heard your prayers. He loves you, and hasn't forgotton about you, and knows each and every struggle you've struggled through, and you've become stronger.
He Loves You, and He Does Have a Purpose for Your Life!
I know you are, and continue to be a blessing to me, and others here. You're in a valley right now, but look up, help is on it's way!
Love you, if you need me, I'm here!
Love Lizzie

Hi Erin,

just a quick note, I'm full of the flu!! My nose is running and stuffed at the same time, and my eyes are watering, and I'm aching, so I think it will be a quiet day with lots of movies.
How are you doing??
Kate

hi Erin
 

Feeling pretty bad at the moment. I wish I could report differently but its just not the case. So sick and tired of being sick and tired!

Today Im struggling to walk, yesterday it was problems with swallowing - felt like I had a big ball of cotton wool sat in my throat. Have been having to use oxygen a lot due to my lips going blue /purple. I am truly fed up, I keep telling myself that there are people worse off in the world than me. But it isn't working.

Sorry this is a real downer for a post......but Im due a vent!

Jamie is doing much better and seems much more relaxed and happy.

I hope you start to improve soon.

Love
Rach

Hey Alice,

I have tried speech therapy....I was doing it for a couple of months...It helped a bit in terms of learning techniques for making my speech more understandable, but you know how it is with MG- the more you use a muscle, the worse things get....lol...So My speech would get worse the more we practiced the different methods...I also had a plasma exchange, and when the pathologist noticed the major difference in my speech, she realized that it was sorta pointless to continue with the therapy...

I do find that the more slowly I speak, and actually, the louder I speak, the more comprehensible my speech is...My non-moving palate makes is the most daunting in terms of comprehension problems for others- for some reason, speaking louder makes it much easier for others to understand...

I agree that there are probably some who are somewhat relieved that I can't talk as much- I'm quite the chatter box, and debater...lol

Nicky

Nicky,

those are indeed two major problems with this illness-

1.things get worse with practice, and that is why you and who ever works with you need to take it into account and realize when to stop and rest. and this is a learning curve no doubt. not all speech pathologists have much experience or understanding of MG, and many healthy people find it very hard to do things at the slow pace of people with MG. and this can be quite frustrating.

2. temporary improvement , which can happen in this illness, following treatments or just the "ususal" fluctuations, can make it appear as if you are getting much better, and there is no point in all of this, and you feel its a "waste of time" to adjust to an illness that is getting better any how.
I once compared it to trying to pull a rope which is held by an elephant, and then all of the sudden the elephant lets go.

alice

Nicky, I saw a speech therapist for an evaluation when I was trying to get disability. She wasn't able to help me talk any better -- BUT, she gave me LOTS of helpful "tricks" in how to swallow easier. This alone has improved my quality of life tremendously!!

Erin, I'm sorry so many bad things are going on right now for you and your family. It's really hard when that happens. But the "you know what" does happen and it's not your fault!

I second what Alice said about your leg. Concerns me too. Please ask your doctor to do an ultrasound or a D-Dimer at the very least. A DVT is not what you need but swelling like that isn't normal. Is it tender or warm or itchy?

I hope you're doing better.

Annie