I know that there are a lot of people on this site who don't really know that much about me. I have myasthenia gravis, sjogrens, bullous pemphigoid (skin) asthma, Hashimotos and all of my blood work is really high. I also have severely low T-cells and have infections- all the time-like almost constantly some years.
I got diagnosed with diabetes in Dec 09 and have done quite well with my diet. In spite of this I continue to have infections. I think I have had 6 antibiotics this year so far. Most of the time all I have to do is call my immunologist and they will order them without me being see. They figure if I tell them what symptoms I have,etc they know with my t-cells that I need treatment. This is a welcome change from going to doctors time after time and having to argue til I was blue in the face for antibiotics. Of course, I never run a fever, so I am not sick you know!!!
Anyway, I have just finished doxycycline in about the 10th of September and as usual have just not felt right, been run down, sweats-more than usual plus nausea. All of these things can go with the autoimmune disease so it can really confuse me at times.
I finally decided I needed to see a doc and got into see a great PA who really listened to me and order antibiotic for me to use if I needed it. Well, I filled it the same day and took one abot 3 PM. Around 11PM I started blowing out orange mucus (sorry about the description) from my right nostril. It almost acts like a boil. I used to have this about every 6 weeks on the left side and now here we go again. I feel like crap and I would guess that it is MRSA again. The ENT will get a call tomorrow and heavens only knows what he will say.
The docs can never get a cat scan/etc of anything in my sinuses that show infection or boil. My body just eludes diagnosis and it drives all of us crazy. I can feel these infections coming but have no clue when they are going to drain, Sooo, to say the list I am frustrated. Fall is my favorite time of year and I had planned to do a few things around the house. Sitting on my posterior much of the time wasn't in my plans.
Oh, the immunologist is very leary about doing Vancomycin IV's on me because of my high incidence of drug allergies. Also, with my low t-cells he isn't sure that this will work anyway. So, he takes it conservatively. Thank goodness it drains. If it didn't I would really be in trouble. Thanks for listening to me rant. I bet I have done this well over 10 times in the past 10 years. This doesn't include all the other infections I get.Irish ;D
So sorry for all you are going through Irish. It sounds just miserable. Really hoping you can manage to get over this one quickly and still have some energy to enjoy autumn and do the things you want to do. Thinking of you and sending you hugs XX Ailsa
Irish Im so sorry to hear your really unwell. I also have just started to feel better after being confined to a chair for the better part of the last year.
Its all still fresh in my mind. The thoughts that maybe Ill never regain the strenght and on and on.
Lots of love and white healing light being sent to you Irish from Bopeep xxx
Question .. with all those antibiotics have you ever gotten thrush? If so .. how'd the gravis effect the taking of medication? Did it burn with the sjogrens tongue, etc?? Just wondering.
Irish
So sorry to hear you are sick, gentle hug and strong prayers for you. Hope you bounce back really soon and are still able to do the Fall things you enjoy! Cricket
Hoping you feel better soon! So sorry you are sick.
Awww Irish - you've had a tough year. I've said it before - you deserve a break! Really sorry to hear about this latest infection. I hope you can be given something that will clear it.
Take care of yourself!
Scottie x x
Liz, I pretty much have chronic thrush all the time and when it gets bad I take a med. I have had the burning tongue for many years, but a few years ago it quit as did all the sores on my lips and the burning lips. I'm not bragging cause no doubt that will return again.
Some of the antibiotics make my myasthenia worse but I have no choice but to take them. I will die from infections I do believe. I have been having a lot of infections since about 1974 but they got really bad around 1994. In 1996 I got really sick and missed 4 months of work and my balance was very much affected. Ended up having a horrible ear infection and pneumonia with none of the symptoms. Just felt yukky. My body doesn't react like normal peoples due to low t-cells.
I have lost my hearing in my right ear from that infection and what was probably autoimmune assault on my body. Also had to have ear surgery and lost 50% of my balance. Fortunately, I have been able to compensate some but my well being when I walk is always in jeopardy. Interestingly it doesn't bother me to drive. But when the ride is over my brain is exhausted from working overtime balancing me in this world.
I am going through a bunch of this stuff because I would imagine that all the new people on this site have no idea the thiings I have had. This is just the short story. In 2005 I was having episodes where I was rasping in my throat when I breath and I knew that something was trying to obstruct my breathing. Hubby took me to 2 different ER's over the course of a week. When it got back I found that if I laid across the foot stool on my stomach I was able to breath better.
I got a little pen knife and sterilized it to the best of my ability and got things ready in case I would have to do a tracheotomy on myself. We live far enough from town that I knew I would either die or have brain damage if I got obstructed. I was not going to die because of a few minutes transit time with the ambulance. I reviewed the procedure on the internet and was ready if need be. I was psyched cause I knew I was very close to trouble.
As you know the ER sends us home if we don't have a life threatenging illness. God Bless em!!!!!!!! One night we got home at 1 in the morning from an ER in the cities. Hubby was sleeping and I went to hack and cough as is my daily routine. Well, the abscess ruptured and I got rid of all that orange infection and the raspy breathing. Of course, no on believes me except my immunologist. I should have had a video cam.
This has been the story of my life. Infections, pressure in my nose and throat, cat scans that show nothing, several upper respiratory procedures under anesthesia that show nothing and here I am 12 years later still hacking out all that infection. I call myself "pus pocket". The docs are really flummoxed as to why they can't find the spot cause it is pretty much always the same area that is infected. I never know when these are getting bad and when they will pop. I have these abscesses bust at work and had to disinfect the bathrooms really good.
These infections are probably a leftover from all the bad dental infections I have had in the past. I don't whine and swoon like a lot of people probably would because I have a high tolerance in the misery index. Either that or a high stupidity index. The old timers on this site have been through a lot of events with me and I finally got to the place that I was sick and tired of talking about them.
My immunologist has finally decided that some of my low t-cells is hereditary and precipitated by autoimmune disease. I told him one time that I am as bad as an HIV patient and he told me I was worse than a HIV patient. What can I do? I can't take the strong meds because I will end up with all the infections and I have already had mycobacterium kansasii which is a noncontagious form of TB that people with a compromised immune system have. I had one year of treatment on TB drugs that time. The last time I saw my immuno he told me that I sure "act like a lupus patient" but no positive blood work. Besides it wouldn't make any difference in how I am treated. I can't take the drugs.
Just got a call from immno office and told me that my Vit D is really low so start on the 8 weeks of 50,000 IU and then go to 2000 IU weekly after that. You all know that if we live long enough with this autoimmune stuff we will get just about everything. My colon is affected and I have some neuropathy which has improved with IVIG. So, yes, I am unwell and have been for many years. But that ain't stopping me---I still will do what I can when I can cause I ain't dead yet!!!!Irish
Irish,
My heart aches for you to hear you going through this again. You are always here for us with your words of wisdom and we all just wish we could fix this for you!!
Your attitude and spirit is wonderful and something to be exemplified!!!
Our thoughts and prayers are with you!!
Liz D.
Irish,
I'm so sorry for all that you go through. You are such a kind and helpful person and it just seems you get more than your fair share.
Sending a big hug your way.
Anna
Eek Irish!
sorta puts my lingering head cold into perspective! Jeez.
My only issue is that since I'm already pretty deaf, the blockages in my ears sorta undo the effect of the hearing aids.
I rather dread going to group things, which sucks since I'm new in the community and need to get out and about.
but you darling Irish are experiencing the sufferings of Job here.
I thought we had HIGH immunity, but I guess that's just a hit or miss thing.
What puzzles me is how I have Interstitial Cystitis, and Sicca and still test negative for every autoimmune test.
AND so now I have no credibility with the family of course, who are all medical types and believe the tests.
AND the new neuro says I don't have ataxia, when any fool can see I do.
Well of course now you say "he's not any fool'.
But Irish, I know you know to hang in there, try to keep breathing (guess that's not so easy now), and be gentle.
You know it sounds like a lot of what Navydad suffers is like what you suffer.
Life surely isn't fair.
Easier to say when things are OK on my side.
Keep us posted.
Hugs and Kisses
Elaine
Oh Irish--you and your dear hubby sure have been put through the wringer this year.
I am so sorry to hear that you're fighting off yet another infection and feeling miserable.
Please know that your fellow sjoggies are rooting for you and wishing you all the best.
Irish
These infections of yours are crXp. I don't know how you cope, and still have time to help other people. My thoughts and prayers are with you and your hubby.
God bless.
Kathyx
Irish - I'm sorry you have yet another infection. >:(
I will say - you are one incredible lady! ;D You have a list a mile long of things that have happened to you and yet, you're like the Energizer Bunny . . you just keep on ticking!!
I value you input on the forum - you have such a wealth of information and life experience - and I'm glad you share it with us all.
Please take care of yourself and I hope the doctor(s) can find a combination that will rid you of this infection once and for all!! Enough already!!
Hugs,
Bucky
Irish, I'm sorry you are so sick. If I could, I'd take one of your infections for a bit--but I never get infections. I am glad you have your facts and background straight so you can tell those drs what to do. Seems they don't know. Lucy
So sorry to hear you are going through this...
I hope you feel well enough soon to enjoy the Autumn offerings..
irish, oh bless your heart. :( Like others have said, you have been through so much. :'( I can understand the knife thing if you thought you might need to do that in an emergency. :o My psychiatrist had lupus and that skin thing you mentioned. The bulbous phengus. Not sure how to spell it, and she had showed me her arms.
Also you have the myasthenia gravis. You have had to deal and suffer with so much. It's hard too when you just keep having so many infections. You need a break from all of this, and I will pray your doctors find out more to help you have it, and even better health over all. God Bless you dear irish.
susanep :)
Thanks for all your kind messages. We all know that we can't give up. Life is not fair and the pot of gold is at the end of the rainbow. Well, you know what I mean.
I get down, for sure, and the older I get the harder it is to cope. Pooh will be glad to hear that we finally got the kitchen cupboards done and it only took us 4 years!!!! I never would have believed all the physical stuiff that has interfered with us getting them sanded, panited, varnished, new hardware and hung. They look nice. Out 3 boys don't like them but they don't live here anymore!!!
So many things that we meant to get done and our health went down the tube so early. I apologized to our kids for our bad health and bad genes. Heavens only know what they have ahead of them.
Meanwhile we all do the best we can and we do not give up. There is no other choice but to keep on keeping on. May you all have the strength and ability to hang in there through this part of your life. Trouble breeds character and I think this board is full of people who have more character than they ever thought possible. Good luck to all. IRISH ;D