[erinhermes]

I posted on the wrong thing earlier - my mind is in a fog today.......

So I have been feeling a little rough recently and went to see my GP - she thinks I may have pneumonia - AUGH!!!!!!

I went and had x-rays done on my sinuses and chest, so hopefully I'll know what's going on soon!

I also have 3 tooth infections that require my teeth to be pulled and implants put in, and a bug that won't go away (Fever, upset tummy, the works)!

Then a truacny officer stopped by cuz' my son has been skipping 1 class recently!

I want to scream! Cry! I feel so mad right now! I just want to feel "normal" again! No more 20+ pills a day! No more being afraid to go outside cuz' my face swells in the heat! No more eating ice and drinking using a spoon )my soft palette is still giving me grief).........

Thankfully I'm on anti-depressants, otherwise I don't know how I'd get through days like today!

MY GP (who is an amazing woman) just kept reminding me to not let this darn disease get me down - she is right, I know, but today I'm going to allow myself to feel down.............

I see my neuro on Friday so maybe he'll set me up for more IV IG or the other - anything to feel better again!

MY FIL bought me and my hubby a cruise to Jamaica in a few weeks, so hopefully I'll be up to it! My FIL is such a sweet man!

Bad day today - hopefully 2morrow will be better!

I just needed to vent! Plus, once you have an incurable disease and constant tooth infections, you can get all the pain meds you need - anther source of concern for me, though I'll post that later - one day @ a time........

Erin

[Brennan068]

Ouch. Pneumonia seems to be going around this autumn. I'm off work for another 2 months while I try to recover from my recent bout with it. Hope all works out for you Erin.

Brian.

[erinhermes]

THanks Brian! I really appreciate your kind words!

Pneumonia really sux - huh? How did you know you had it? What were your symptoms? How long did it last? Pneumonia really irritates MS as well..........joy!

Erin

[Brennan068]

Yeah, it wears you down and kicks the immune system into overdrive... with all the antibodies it can kick out severely aggravating MG. Mine was caused by complications due to radiation therapy (burns on my lungs) combined with a cold that I had picked up during radiation.

I was very tired and had a persistent cough that was just not going away. I was bringing up lots of green/yellow gunk. Obviously, my MG symptoms were much (*much*) worse. I lost even more weight while dealing with the worsened MG symptoms which has complicated my recovery.

I was hospitalized for 2 & 1/2 weeks for it and the complications that went with mine. I just finished 4 weeks of antibiotics yesterday and I finish my prednisone (for the burns on the lungs) in 2 days.

[erinhermes]

Well Brian, that is EXACTLY what I'm going through now - AUGH! I really hope I don't have to go to the hospital - hate that awful place!!!!

On the other hand, if it helps me feel better sooner then I guess I have to!!!

How are you feeling today? Are you better?

I believe you mentioned before that there is a site on Facebook where people with MG go - do you know where it is? I signed up cuz' I'd like to make friends with our disease.............

Erin

Hang in there! You'll be back @ work before you know it!!!

Originally Posted by Brennan068

Yeah, it wears you down and kicks the immune system into overdrive... with all the antibodies it can kick out severely aggravating MG. Mine was caused by complications due to radiation therapy (burns on my lungs) combined with a cold that I had picked up during radiation.

I was very tired and had a persistent cough that was just not going away. I was bringing up lots of green/yellow gunk. Obviously, my MG symptoms were much (*much*) worse. I lost even more weight while dealing with the worsened MG symptoms which has complicated my recovery.

I was hospitalized for 2 & 1/2 weeks for it and the complications that went with mine. I just finished 4 weeks of antibiotics yesterday and I finish my prednisone (for the burns on the lungs) in 2 days.

[Brennan068]

To stay out of hospital, don't do what I did. Get your doctor to get you on antibiotics now before your MG suffers. I put off going in to get an antibiotic until it was affecting my oxygen levels and they wouldn't let me go home. Hospitals are great places to pick up weird and wonderful bugs and I managed to get exposed to MRSA while there which is why my hospital stay and antibiotic regiment was so long.

I'm getting better... slower than I have from the other things I've been through this year as I've been worn down. One of the side-effects of the antibiotic they had me on is that it makes you tired like I needed that.

The most active facebook group for MG I've found is: http://www.facebook.com/home.php?ref...6883419&ref=mf

Look after yourself. Get on antibiotics and get lots of rest and fluids.

Brian.

Originally Posted by erinhermes

Well Brian, that is EXACTLY what I'm going through now - AUGH! I really hope I don't have to go to the hospital - hate that awful place!!!!

On the other hand, if it helps me feel better sooner then I guess I have to!!!

How are you feeling today? Are you better?

I believe you mentioned before that there is a site on Facebook where people with MG go - do you know where it is? I signed up cuz' I'd like to make friends with our disease.............

Erin

Hang in there! You'll be back @ work before you know it!!!

[redtail]

Oh no Erin,

that just aint fair!!! I'm not sure what to say, cos what ever I say would seem insignificant

Just take care of yourself, rest lots and know I'm thinking of you
redtail

[erinhermes]

Hey guys! How are you doing today? I hope all is well!

Brian - you'll be back @ work before you know it! My gp started me on some serious anti-biotics yesterday, b/c the other ones were not effective @ all, so I'm hoping 2morrow will be better! Either way, I see my neuro and he'll decide what he feels is in my best interest.

I just really do not want to go back to that hospital! I seem to pick up a bug every time I'm in there - filthy places, really!

I'm still pretty weak, but figure that if I rest enough 2morrow will be better!

My mom is coming over tonight so we can watch the history channel and I love Lucy - FUN!!!!

Oh, my hema thinks that if I do have to have the plasmaphoresis or IV IG I can do it as an outpatient procedure - yippee!!

Take care!
ERin

[redtail]

Hi Erin,

I'm glad your GP seems to be sorting things out for you.

I can understand you not wanting to go back to hospital, I went back as a day case for my IVIG, and yep that was enough for me. It really tired me out, they dont seem to understand even tho I was in a chair that partially layed back, it still is very exhausting sitting up, they don't get it, so I've given up trying to explain that it would be so much better for me in a bed. Still I guess I'm lucky to be able to have IVIG at all!!

Hope you have a good night tonight
redtail

[Scots Kat]

I'm not sure if it's available in the States but over here there is a vaccine for pneumonia that my doctor recommended at the same time as the flu jab. Since it's not a live vaccine it shouldn't interfere with anything either. It's probably too late for this year (esp if you have already got pneumonia) but maybe something to look into for next year! You could try to realtionalise (HA) with your insurance providers saying that one jab - vs a 2 week stay in hospital would be a better deal. Although maybe Erin with your needle-thing you wouldn't want it anyways!!

My husband has had the flu now for 10 days - it's hard to keep both of us going but I'm coping. I'm just so thankful I didn't get sick too! I'm still not sure how I escaped it... especially with all my immunio-suppresant meds. I have had some other bad news on that front... but I'll survive.

Stay healthy!
~KAthy