Hi folks, I have not been very active on the boards the past few weeks. Actually, I have not been feeling "up to par"(whatever that is) for the past several months. Anyway, many of you know that I have the myasthenia gravis, sjogrens, hashimotos, bullous pemphigoid and the extremely low t-cells.
I have had so much thick mucus since 2000 and it drives me crazy and overwhelms my life. It is thick and hard to clear and I have many infections which add to the fun. Anyway, I have had a diarrhea that was weird and I assumed it was from too many antibiotics, also have had a very painful throat that is much worse than other times with infection down by the larynx. The past week I have had a swollen and cracked lower lip and it just dawned on me that it is oozing serum and crusting. Also, I have had this substance in my mouth that is from I know not where, but it is like having mucus with crystals that are crunchy.
It just hit me yesterday that I probably am having pemphigoid in my mouth and esophagus or upper trachea. I had another cat scan with dye a couple weeks ago and it was negative. My ENT is totally at the end of his rope and has said that he will just have to put me to sleep and scope me and check me really good. He did this 7 years ago before I was diagnosed and when my health was much better.
I am scared to death of going to the hospital again and having this done. I trust my ENT and the anesthesia etc at the hospital has always been good. However, my t-cells are so low that infection is a biggie for me. Also, I will have to stay overnight per my neurologist who says that with my myasthenia I can only do in-patient procedures when anesthesia is used. They have to watch me cause I could have a crisis and need a ventilator due to paralysis of the diaphram. Severe stress can set off this type of crisis in myasthenia.
Anyway, I feel yukky and am not getting much done. However, I did get Christmas chopping done, presents wrapped, etc. Had Thanksgiving at my house and the kids helped. All of us get so pooped when we do things so you know how it all goes.
My immunologist has to talk with my ENT on Friday and we will see when the surgery will be. Will let you know what happens. Hope everyone is hanging in there and doing the best they can. Irish ;D
Irish
I'm sorry you are still unwell. It has been a long hard slog for you. You must be really wary about having the surgery, but sometimes it's the only way we get the answers we need. Sending you lots of good vibes and a hug.
Kathyx
It's just a thought, Irish, but have they considered the GI-cam? That way they could get a detailed look at a lot of the whole GI tract without exposing you to the anaesthetic or the bacterial minefield of the hospital. Of course that's only if they are wanting a look...biopsies aren't possible with the cam.
I'm so sorry you feel so lousy going into the holiday season, but from what I know about you...you'll not only have a great Christmas, but make one for everyone around you! My Christmas wish for you is a time of feeling well, with people (and possibly elves) waiting on you hand and foot, and the start of a period of recovery!
Gosh Irish,I remember you suffering from your many illnesses and am sorry to here it's continuing.You are one strong lady that is for sure.I wish you well and hope some relief is right around the corner.
Ruby
Wow, Irish your a bigger mess then me. I had to look up Bullous Pemphigold, I thought anything with gold must have some redeeming value, boy was I wrong. Sounds like Russian caviar.
I understand not wanting to go to the hospital, I am alway afraid of picking up some bug, after all hospitals are filled with nothing but sick people. Hopfully you will get some relief and they won't give you a pee bag like they did me ;D
Irish,
Speak of the devil, I was just thinking of you the other day and wondering where you were and how you were doing. I am sorry you have been feeling so ill. Really you have gotten more done - Christmas presents bought and wrapped, Thanksgiving at your house! - being so ill than I do on my best day. You are a marvel!
Linda's suggestion of the G-cam sounds like a really good idea to avoid a lot of the hospital stress to your system, if it is possible.
Best wishes for better health!
Sue
Hi Irish :)
I'm really sorry to hear you've been feeling so lousy. You have such a lot to contend with and it doesn't ever seem to get better. How the heck you got your Christmas shopping done I just don't know. You are one amazing woman!
I'm sorry to hear you are having to head for the hosptal. Here's hoping they find out what is going on and that things go as smoothly as they can. We're all rooting for you!
Take care - Scottie :)
Hi folks, The Christmas shopping got done on the day that hubby took me to cities for my ct with dye. On the way home we were coming up on the big Fleets Farm store and I told hubby lets stop and buy presents for grandkids and get it over with. Other years toys are gone when we get there. Sooo, he was with me and helped. I have to admit that I hate Christmas shopping because of the crowds and my health.
Anyway, we only do the grandkids and they are done and wrapped and I have bows to make. I told the kids to not give us any Christmas presents this year and they said "but you always end up buying us presents". I told them "not this year". We all have everything we need and the biggest thing we all do need is peace of mind and presents don't bring that. God Bless the economy!!!
Linda, You are right about the cam but I am thinking that they will need to do some biopsies as I have had a few things show up on the cat scan that don't look that challenging, but they are also called "abnormal" in the report. I also think that they need to check to make sure that my lymph nodes in throat, etc are not enlarged more than shows up. I am having more sore areas in my throat that are painful to swollow over and I an thinking it is the pemphigoid. My lips are worse and crusting and it is just like what I had on my skin.
The funny thing is that if I ever do get any type of cancer I can't take any chemo anyway cause it kills of the t-cells---probably could do some radiation, etc. So, I just don't worry that much about it. I do want to know if this is increased bullous pemphigoid I will need to kick up the Prednisone. Also, the pemphigoid can keep areas of mucus membrane leaking and prone to infection and infection is what I get!!!!!
Epson, I don't want a bag, but my concern is that they could get in my throat and end up having to do a trach on me because of the swelling that comes with manipulation in this area. I would live through it but it would be one more "thing" to take care of and I have getting loaded down with eyes, nose, mouth, nasal irrigations, etc. It pretty much takes up my energy for some of the morning.
Always good to hear from you people. There are so many new people on the site that I have a hard time keeping up. By the way, where is Pooh? I haven't seen much of her around lately.
All of you take care and have a blessed holiday season. Hugs Irish ;D
Epson, I hope you are feeling better!!!
Love to you Irish!
Janna
Happy Holidays Irish. Glad to hear you got the Christmas shopping done already. That is a relief. Keep us up to date on how you are doing.
Genko
Quotehad to look up Bullous Pemphigold, I thought anything with gold must have some redeeming value, boy was I wrong. Sounds like Russian caviar.
I think Epson said it well (above), but I was thinking you meant some kind of new slot machine and started to get excited.
Sorry you're feeling this way, Irish. Get better soon. Lucy
Praying for you irish
So sorry you are going through so much. I am also glad you have your shopping done. Have a restful holiday as much as possible. One day at a time.
susanep :)
I can totally relate to the surgery woes, I have had so many and each time I am scared to death inside. I dont usually let the people on the outside see this fear. Im sure your doctors are great and you will be fine. I dont think they would risk your health to do surgery if they didnt think you would do fine.
Good Luck!