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

Hello honey!

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

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! You have an amazing sense of humor!

How are YOU doing? Your family?

Sending you HUGE hugs and a big thanks!

Love,
Erin

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

It will get better soon - I know it will!

Love,
Erin

Erin, 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

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