A want to scream type of day

[navydad]

I was thinking back today about all the missed clues over the past two years and got really ticked off, being told its all in your head,, then finnaly getting a DX but still some doctors refuse to treat becasue of no positive bloodwork, I;m sick of a constant sinus infection which I see the ENT AGAIN on tuesday,, he has already told me he can do nothing else about it,, This I cannot accept,, I am sick of a sinus that does nothing but drain slimy stuff down my throat all day and night,, I;m sick of a yeast infection in my mouth, Im sick of food barely movng through my system,, I am so p***ed about some of the Neuros who told me my leg problems were the result of my back being messed up,, and I told them for over two years,, its not my back,, my back doesnt make my feet burn, cramp up,, become cold insensitive.
  At least my present Neuro had the brains (PUN?)to do a nerve biopsy to prove I was right all along,, now who gets to man up and pay for the damages 2 years of inaction on there part caused me to lose nerves in my legs,, I dont see anyone jumping up to fix that little problem,
  I;m tired of a burning mouth,, I;m tired of not sleeping, I;m tired of people asking me,, so when yu going back to work,, I;m tired of calling doctors,, and getting no where,
  I dont know what it is around here,, but it seems people from these parts have this buck up cowboy and get on with life,attitude, I want to choke the lot of them, then do it again, I am afraid teh next doctor I see,, I might just do that without even thinking it through,
  I;m so sick and tired of going to bed, knowing its not going t be much better in the morning, if I do sleep at all, I;m tired of almost running myself into the ground daily to try an not think about it,, but wheni try to slow down,, the yucky mouth comes back, It never left, I want others to fel this misery,, all i get is,, that must be horrible,, or I hear, I had dry eyes once,, it was terible,, screw you pal,, live it 24/7, then get back to me,
  My sister is a Dream,, lives next door,, comes over complaining about a ear ache,, ahh I would love to talk to you right now,, but I;m to busy trying to stop gagging with all this slime running down my throat, or,, wait a minute,, I have a slice of bread lodged i my throat let me stick my finger dwon there and get it out,, then we can talk, all sign language of course
  I am expected back at work in two weeks,, I will drop dead if they throw me to the wolves and work me like they did before, and with summers heat coming on,, and no way to control my body temp,, well first day working outside will prob do me in,, on my headstone I want it written,, Gee the guy WAS really sick,
  well thats it for my Sunday night rant,, but to end the evening, I called my GP on friday,, told him on the phone,,  I am gagging on slime constantly,,I can see it pouring into my mouth in the back of my throat from what ever the heck that is ,, Sinuses I guess,  I am sick of thrush in my mouth,, I am tired of spitting white creamy paste in the sink in the mornings,, so whats he do,, calls in a antibiotic and a decongestent,, SIGH,, guys a real Dr. House,, one condemed House

[irish]

navydad, You have really had it!!! And I don't blame you. These docs get by with telling us it is all in our heads and we are so darn sick!!! My husband told a couple of them that they were the only occupation he knew that got paid for doing nothing.They did not like that. He also told one that if you took a car with a bad carbeurator to a mechanic and got it fixed and it didn't work good, you could take it back and get more service or get your money back. In other words, if you didn't get it fixed why should you pay for it.

I still haven't had an answer from you about your primary immune deficiency or whatever they call it. I still think you would do well to see an immunologist or a hematologist to get your blood issues treated. That would help some with your infections I would think. I have a lot of infections and gag and spit and choke, etc. My nickname for myself around the house is "pus bucket". Thankfully, I don't have infection now but stay around and one will show up eventually. I had 9 antibiotics last year plus about 5 treatments for the yeast. Believe it or not, I am not nearly as sick as I used to be as I don't have as many gross infections.

You have a lot of stuff going on and I know you were on the IVIG and that is supposed to help the immune deficiency and also help the neurological symptoms. I don't know if you were taken off because you did not qualify. Seems like you would qualify if you had a doctor fighting for you.

Hope you can sleep and that you can keep on fighting. Don't give up. I know it makes for a lousy life but there still is some joy out there cause you have a wife and kids. They are concerned about you cause you have mentioned them. Hang in there. As far as work, I don't know what you have for help --- as in doing light duty, etc. I really don't know how you will be able to work at all. Sometimes we just have to hang it up. I know that I did. Was not what I wanted, but had to do it. My hubby was on social security at the time so we sure didn't have much money but we made it through. Irish

[Scottietottie]

Hi navydad 

I'm glad you feel you can come and vent in here. I only wish we could help more. I think the treatment you've had - or rather NOT had - is terrible.

It doesn't sound like you'll be fit to go back to work in two weeks. You have to feel better than you do right now for it to be possible. It's not a case of 'pull yourself together' - its a case of an infection the docs haven't beaten yet - and they need to.

Irish makes a good point about trying an immunologist. Her immunologist seemed to do a lot for her.

I really hope you find some other docs as good as your neuro. I don't suppose he could suggest any?

Take care - Scottie 

[Carrottop50]

Sorry to hear all the things that  are troubling you... being sick can be the pits... and then having a drs that don't help at all....

I am new here so  I don't know all of what you have going on but I hear you and I can listen/read what you have to say and I hope that is some comfort to you.... you can scream and yell here because  sometimes you just have to let it out before you explode.   I understand the feelings you have about your sister.... but really unless you live with health problems you don't understand how someone can feel that way every day.  All they know is that you get sick well then you get better.... well that is how it works for them not us... They really don't understand... I have the best hubby anyone could have but then there are days he doesn't understand.... In fact I try not to let him know how I feel every day.... He is understanding more now only because he is having some health issues.

I don't know if you have tried this or even if you would like to...but here goes any ways.... for that terrible stuff going down your throat.... My husband does not have an autoimmune disease but I think he thought he had throat cancer a few years back... he always had a  sore throat and something always  draining down his throat and went to dr time and time again for it and as you his dr put him on antibiotics over and over... it never really help him....so then he got to feeling for sure it was throat cancer..... He had lost his best friend to throat cancer.... so it made it even more real to him.... I do not remember why we went - I am thinking another friend told us about themself having sore throats all the time.... Here to come to find out he had tons of allergies ... I think every weed and tree that grew in our yard he was allergic to.... then to top  that he was allergic to over 40 foods .... foods that he ate every week.... it was terrible.... he was allergic to potatoes, tomatoes, beets, green beans, red meats, water melon, eggs, wheat, oh the list went on and on....Well he got allergy shots and we tried to stay away from most of those foods for about two years.... also the specialist told him to make sure that he try to eat a variety of things and try not to eat the same foods over and over again.... he said because if you eat like potatoes every week 2 to 5 times your body start to rebell against them... well any ways it took some time for the shots to work and he still tries to not eat the same thing twice a month and  that is the hardest part.  But it has worked for him.... he took the shots for 10 years and now he doesn't take them any more but he seems to be doing ok most the time now he just take Zyrtec D (over the counter) for his allergies.... So maybe that might be a direction you might look into... of course that is up to you.

I think most of us here know how you feel... we have been through it too.... some more then others.... but try to take one day at a time... at least that helps me.... I don't know if you are on antidepressant but maybe it might help some... I know when I was still working and had all this stuff going on....I was ready to scream most days too... but my antidepressant helped a lot. The last good dr I had would give me a paper to fill out at every visit to see how I was feeling to see if I was depressed and he would come back to the room and total up the score to see just where I was....and most of the time I was depressed.   I am not a dr these are just suggestions.... I agree with Irish that maybe this is the time to file for full time disability if you can if you think you can not work any longer.  It takes all you got to file ...believe me it take all you GOT.... And it isn't easy to sit at home every day as the rest of the world keeps on spinning along.   I have found that I had to get some hobbies...I do scrapbooking and love my computer.... on disability you don't have much money so the hobbies have to be something you can afford... maybe even volunteer some where... maybe volunteer on a website in some way if you can't get out and go...  

I sure hope you  get some relief soon....

take care.
Carrottop