got out today

[Still in the hunt]

I made my wife take me to the local park today so i could try metal detecting again,, after about a hour my arms were burning so bad I had to quit, thats wehn mayhem started, both arms went into spasms, along with the legs,, so we stop at Burger king where just the  thought of eating made both glands swell up and I started to choke right there in the restaurant,, thick white stuff that they refuse to treat,
  I dont kow why I even bothered to even think i could do what I loved, but i tried and found out I cant,, its just depressing,, I hate mornings,, I stand up,, everything goes numb, and the gagging starts of all the stuff that built up over the night,, both glands pumping out goo,, then the guts feel like there falling out,, so it goes, its just part of life I guess

[gold55]

I'm so sorry to hear this Still OTH!  Are you taking any medications?  What do your doctors say?  Hope you feel better soon.  Metal detecting sounds fun!  Wish I had the equipment!

[Still in the hunt]

Only meds I am taking is neurotin, I refuse to take the obana,, one dose of that and I felt like a junkie, as for the glands,, I;m happy to announce I have a appt with a new eNt,, and its real soon,, Like Mid NOVEMBER, tried to get in sooner,, but you know the med sysstem,, sit wait and choke, my pcp,,hes a joke,, and I dont want to start all over again,, were down to one vechile and my wife cant take off work to take me anywhere anyway,, the (case worker), well she said she was going to try and find me ways to get to Doctor appts,,, that was two months ago,, guess shes busy with other patients,
  I loved metal detecting,, did it for over 30 years and have found quite a array of stuff,, it was nothing back in the 70;s to come home with pockets full of silver coins,, metal detecting was in its infancy and the stuff was almost laying on top of the ground,, its gotten much harder now,, today i set out a goal of just getting 10 coins,, it took about 2 hours to do it, and I paid dearly for it all day, I just wish they could at least make one thing managable,, I am really tired of screaming when i go to the bathroom,, thick white goo pouring out of my mouth and nothing coming out of hte other end, now before anyone thinks I havent said anything,, I spelled it out pretty darn clear yo my PCP last week at out appt.,, he loked up my nose,, wrtoe me a scrip for obana and told me to eat more food, ok doc,, I;ll do just that,, sure dont want to be non compliant,, oh, and sent me for xrays at the local clinic,, now i called friday to see if any results came back,, the nurse told me,, oh they wont be bcak for at least a week,, A WEEK?,, where do you send htem,, India,, are they outsourced now too,, I swear i have the most stuoid doctors or the worst luck in the world,

[gold55]

I totally understand what you're saying Still......I work in the medical field and I was always the "last" person to go to a doctor....so there ya have it!!!  It took me tons of courage to go to the doctor when I got my diagnosis of Sjogrens first of July!  Then to have to go to all the others.....ahhhh it's killin me!  Well, it's ashame the metal detecting business is so difficult now.  Isn't everything tho.....at least when we look back at the 70's and how things were.  I loved it then....in h.s. and on my way to college...thought I had the world at my feet and now......the golden years which are tarnishing for me.  'Slap'......had to slap myself silly to come out of that negative talk, sorry!!  I too am looking for a good PCP.....someone who will work as a team with my other docs.  Once my current PCP sent me to the Rheumy....he basically said "Adios" and we'll see you once or twice a year for Primary Care stuff!!!!  ahhhh that really ticked me off and I've been looking since then.  One that I called had closed their new patient panel but as soon as the office mgr heard I have a disease.....he started calculating how many office visits I would be making and he may think about opening up the practice to me but in November...can you believe it!!!!

[susanep]

Still, I am sorry to hear you became so sick when you got out. It is a big deal to me to water my flowers on my front porch or things similar to that.

I remember one time when I was working at school that I had to attend a school trip to help out with another class.

When we got there outside, everyone was walking way ahead of me, and the faster I tried to walk which wasn't very fast, my feet just started going numb. It was strange to feel a numbness, and yet I kept walking, not sure of what was going to happen.

These autoimmune disorders sure are complex, and so is the day to day getting through them.

susanep 

[Carolina]

Hey SITH

I think the drug you won't take is called Opana.   

I think it's great that you went out.  If you're gonna be miserable, might as well get a change of scenery, is my idea.

Which is why I took the trip to Cuba.  Spent a lot of time inside reading, and of course in the various dining rooms eating (I'll be hunting for my fav food groups on my death bed: sugar, salt, fat, flour, chocolate), and exercising in the pools.

I wasn't feeling very great, but I'm not great at home either. 

You of course feel terrible most of the time, but at least you gave it a shot.

I don't know much about Opana, except that it's for moderate to severe pain.

I guess it's not for me since I have reactions to all the codeine type drugs.

I also guess that the best bet is that you have a severe sort of generalized neuropathy, complicated by sinuses screwed up repeatedly with surgeries.

Hence the neurotin for nerve pain and the Opana for pain in general.

After all this time together, SITH, I think it sounds like you are going to have to live with this (rearrange the letters in your name!).

Why won't you take the Opana?

I can't take any of those codeine analog things cause I begin to itch insanely all over my body, and don't even notice that the pain is gone, which is way weird.

I'm sure I"d take itching over pain any day, but when it happens it's so unpleasant that I can't stand it.

Actually, when I'm really in pain I just want to be asleep.  So perhaps I should pursue some of the muscle relaxants and sleep aids as an alternative.

I don't know, it seems like the rock and the hard place all of the time, doesn't it?

Keep us posted, angel.

Hugs

Elaine

[Still in the hunt]

I cant take it becasue all its doing is masking symptoms,, i wish everyone here could see how bad my glands are,, I cant eat a thing now,, and It  hasent been for me not telling them,, I called them again today,, now its a big deal to try and get me in to see the new ENT,, they just messed around,, My PcP,, after I called this morning said,, I cant do anything more,, last week you were full of ideas,, how about putting me in teh hospital ,, oh,, you need to go get evaluated,, been down that road, I jsut have rotten luck thats all,,

[Carolina]

Hey SITH, I'm dying to 'mask the symptoms!"  If you can't get rid of them, mask them, that's my ideal.

That's what neurotin is doing too, really.  Well I think.  Irish would know, and I should Google.
Googled Medilexicon, which says
Mechanism of Action

The mechanism of action exerted by Neurontin (gabapentin) is unknown. Gabapentin is structurally related to the neurotransmitter GABA, but it does not interact with GABA receptors, is not converted metabolically into GABA or a GABA agonist and is not an inhibitor of GABA uptake or degradation. (Neurontin prescribing information)


And going to the hospital won't help you.  The Mayo Clinic in Rochester couldn't help you, angel.

You'll just get those super sensitive spots on your elbows from rubbing against the sheets.

I saw a doctor today about another possible UTI, and he said about something: "we just don't really know much about that".  And I believe him.  He also said "Try not to see doctors" and I said I'M TRYING!  I really am.

It's just one test leads to another.  Tomorrow I have an echocardiogram and see my cardiologist.  We'll talk about my cholesterol (down in total, a bit, down LDL, a bit, UP in VLDL!  Who knew from VLDL??? Not me 'til now).  And we'll talk about weight.

It's so stressful I may have to eat a couple of candy bars to survive!

And then, honest to god I'm giving up on doctors.  I think some of my 'problems' have been caused by meds and surgeries!

Hasn't that been your case, too, SITH?  Surgeries on your sinuses?   I have had sinus surgery recommended, but I'm saying no, 'cause of what happened to you.

And it seems I remember that you had spinal surgery, or surgery on your head?   Right now I have a low grade infection of some kind, and my horribly osteoarthritic spine feels like a bad, sick toothache.  Surgery has been suggested , and I'm saying NO NO NO.

I'll try the heating pad in a bit.

I know you think hospitals and doctors have a solution, SITH, but I don't see how that's possible.

And angel, you just won't take no for an answer.  I don't blame you, but I've followed you for well over a year now, and if there is a bizarre answer out there, it isn't in an ER or with a GP, most likely.  But what do I know.
Nothing.  It might be just around the next bend.

Good luck angel.

Keep us posted

hugs

Elaine

[Still in the hunt]

Elaine,, I just want one thing to be brought under control,, and I am aware that thigs are never going to be normal again,, but I do think I deserve to at least be able to eat without my mouth filling up with goo,,, I thinki deserve to be able to get up in the morning without both glands just pumping out crap and me standing at the sink just gagging this stuff out for hours on end, i want to be able to eatANYTHING without both glands going nuts,, the Nurse for my old ENT called and said there going to try and get me into the new practice sometime this week instead of next month, I also see my rheummy, orthopedic surgeon,, not that I want my back operated on,, but the nurse said with the symptoms I am displaying,, there has to be some compression going on, I dont want more surgery, i really dont,, but I thinkI deserve at least the minimal amount of treatment,, and I refuuse to bee shoved off to another doctor,,

NEVER get your sinuses operated on, not if you can advoid it,, i have had 7 and each one just brings more heck, a couple of htem may not have been necessary if they wouldhave listened to me when i told them the paratoid glands were hte problem, but now I dont have any sinuses left,, no, I still wont accept that thigs cant be treated, there are things out there to make life better,, I just have to seek out and demand the right ones treat something,, if the glands have to come out,, take them out,, there not doing me any good,,

Even thinking about food makes htem act up,, they swell,, they pump out goo,, i gag choke and spit,, and thats just thinking about food,, now imagine after i try to eat,, 3 hours of pure heck afterwards,, gag gag spit choke,, cry some,, scream some, no,, I;m not giving up,, I give up I might as well just toss a rope over the rafters

[Carolina]

SITH, angel, I know what you think you deserve.

I understand.

I'm not sure that it exists.

But I realize you just want some company while you're on your hunt.

I wish you all the best.

Keep us posted on what you find.

I guess that last sinus surgery didn't do the trick?

Hugs

Elaine