Update on my wife and me

[navydad]

My wife did come home and my son came home this weekend also,, we really didnt go into the financial situation that much since shes still in a fragile state,
  Its not very good once I started to go over the bills,, but ave managed to keep the wwolf fom the door for a few weeks,
   last thursday I saw the ENT,, he checked my throat and pulled a bunch of stuff out of my sinuses,, told me he doesnt know what to do anymore,, my EOS count is way above normal from last labs,
  then on friday i saw the rheummy,, he said he would treat me but had to talk to the doctor in philly on how to do it,, he said prob a few das of IV steroids, but who knows when thats going to happen
I;m just so sick anymore,, my legs are always cold from the neuropathy,, my bowels have just about stopped working, barely moving bowels,, the weird sensations troughout the body,
  I called the rheummy,, and told them about this,, they are concerned about it and will talk to doctor,, but i relly dont expect to hear from them, they never cal back, she did say my basic lab work looked ok,, so why am i so sick and feeling worse, I complained about my stomach for months,, now its reached critical,, and no one listens,,
  the mouth thing,, i am so sick of waking up all night choking on this white pus that drains all night and day into my mouth,, and theres nothing they can do ?,, so many things going on and no one listens,, i get the blood work done and tehy say,, well your bloodwork looks ok, so your ok,, then explain to me why I can barely walk, stomach barely working,, gulping like a dog,, i cant say much to my wife about it,, I have no advocate on my side working for me,, its just a nightmare, I just wonder what will kill me,, either chooking on hte pus, or just lose control of everything,, tehy have me scheduled for a Qsart test,, now i cant get that till July,, LOL,, July,, its to see if my autonomic system has beed affected,, whichi  think it has, its frustrating getting up every day,, trying to call doctors,, but how can they feel the pain your in and then dont understand whats going on in your body,, and now I;m expected to go back to work,, the Rheummy asked me,, how can you worl like this,, I had no answer,, so I either go back to work and drop over, or do it at home,, its that bad,, SIGH,, I really am ready to throw in the towel,, no answers,, except you need psych help,, I need these concerns adresse now,, not later

[Pooh]

Navydad,
I am so sorry you are having such a rough time of it.  It sounds like you need something more than doctors.  Not necessarily psych help, just someone that will listen and try to help you with a plan to get on with life.

I know this easy, I've been down to the bottom that rope.  It's a long climb back but I made it and so can you. 

Please don't give up, there is light at the end of this tunnel.  Take care and know that a lot of us are praying for you and your family. 

Pooh

[lesleyjoy]

I agree with Pooh ...your family needs to get advice to help in lots of areas in your lives so that you can all face the issues and get a plan of action. Shielding your feelings and the financial issues from your loved ones is going to put everyone back to square one.

Just my thoughts, Take care
Lesley (NZ)

[SassieCat]

NavyDad,

I can't really offer any advice here but I can offer a listening ear any time you need one.  I guess from this point  you can go one step at a time and one day at a time until things start falling into place.  You aren't alone.

SassieCat

[Scottietottie]

Hi Navydad 

I'm glad your wife came back. I guess she was just at her wits end and knew she'd messed up over the money too and didn't know how to face you because she knows how ill you're feeling without all the added stress.

I think maybe you ought to see a psych - NOT because I think you need one - I don't -  but if you see a decent one - maybe they will get you the medical help you so desperately need. Quite apart from making sleeping, breathing and swallowing so uncomfortable, the stuff you are swallowing can not be doing the rest of your system any good.

Maybe your wife could do with seeing a doctor too. If she's feeling fragile (and I can understand why she is) maybe talking it over with a doc could also be a way of getting you some help.

We're all here for you. I just wish we could do more. I'm glad you 'checked in' again. I was worried.

Take care - Scottie 

[irish]

navydad, I am glad to hear that you son was home and that your wife is back home. You have a lot going on. First of all---have you every been told that you have an impaction in your bowels??? This means that your intestine is full of stool and that you are not emptying out good when you go. The stool just keeps packing in your colon and makes a person really miserable.

You need to see a gastroenterologist about your colon. You may be having these issues because of neuropathy in your colon. When you have a neuropathy it can affect the nerves in your intestine or colon and interfere with the impulse to move your bowels. You need to see someone about this as soon as possible. Anytime someone is full of stool they become very ill from all the old stool in their colon that literally makes you sick. Are you taking milk of magnesia or anything???

Also, the doctors need to check out your high eosinophils. There are diseases that have the main symptom of high eosinophils. This could be causing the issues with your sinuses. Have you seen an immunologist or a blood specialist(hemotologist) I know it gets so old have to see all these doctors but I have had to do it and so have others. Many times I had 3 doctor appts in one day. My life revolved around doctors and it has lessened but will always be a lot of them.

Has the ENT every done a biopsy of your sinuses??? There are diseases that can be diagnosed by a biopsy of that tissue. Please ask your rheumy to help you out with referrals for as soon as possible. Also, do not wait for a doctors office to call you back cause things get confusing for them at times. Be assertive and call them back in a couple of days and keep on calling every 2 days or so until you get an answer. Remember that it is the patient who keeps shaking the cage who gets things taken care of. It gets old doing this, but as a registered nurse I can tell you that this is what needs to be done. We don't need to be rude but we do need to keep at them so that we get the care we need.

Hope that your son can find time to help you out or find someway to make things easier for you. Keep us upsated. Irish

[Billydude]

Navydad....I'm glad that your wife is back.   Hey,  there is a new thing that you can do.  If you call your bank and ask about this you might get somewhere.   There is a thing now that you can add the missed mortage payments to end of your loan so that you are no longer behind.  Call and ask about this.
Steve

[wednesday mc haggis]

navydad i did post last night, seems it didnt show up

glad to hear your wife is back, she may be fragile but someone who finds it so hard to see you this way must love you an awful lot!

  talk to your sons about the finances, even if you keep your wife out of it right now, till she comes out of the shock .

   can they help financially for a short time??  i know youve worked all your days and likely dont wan to ask them, but youve worked all your days for them and maybe time they helped you back.

  irish giave some great advice, and i know the thought of more docs isnt appealling, but someone needs to do something, i just dont get why they wont treat you agressively, id like to see these docs cope with the things you have on your plate right now .

thoughts from all of us with you, your not al alone, were here to listen, might not be much, but you at least have ppl who care and you can offload to

T x 

[navydad]

Navydad....I'm glad that your wife is back.   Hey,  there is a new thing that you can do.  If you call your bank and ask about this you might get somewhere.   There is a thing now that you can add the missed mortage payments to end of your loan so that you are no longer behind.  Call and ask about this.
Steve

I did that,, I am waiting to hear from them on what there goingt o do,

[ruby52]

Navydad,I read this post yesterday before anyone replied and I was at a loss for words.I can't imagine what a terrible helpless feeling you must be experiencing.I'm glad your wife came back.Good for you jumping right into the mortgage issue.I just wanted to let you know how bad I feel for what your going through even though I can't think of any helpful solutions.
                                                                                                    Ruby

[Abbasgirl]

Navydad, (((more hugs)))... keep hanging in there like you are. You are one tough dude! Thanks for keeping us updated. I've been worrying and praying about you and your family along with the rest of our friends here.

I hear you about the not knowing what to do and waiting for the doctor to call back. Ugh! I HATE that! It's become such an intolerable matter to me. I've got a doctor that takes forever getting back to me and sometimes not at all. It's not the doctor but the medical staff. You leave messages for the nurses and no one ever calls you back even though the message says they will answer you within 48 hours. Calling reception does no good either because that's on an answering machine too even though they're there. Now we just go over there and give them a face to talk to. Sometimes we have to and I hate that's what it takes but it does get things moving finally. I've gone over there about to fall over just so maybe they'll remember my name, but good gravy... they are some of the most cold blooded people...why they got into the profession of taking care of people is a wonder. I'd love to find a better doctor...but I've been through so many now...it's like switching to the same problem or a different kind. This doc is pretty good, he listens and cares, but it's heck getting to him through his employees. I'm praying for you to receive a wonderful advocate. My heart is so heavy for you to have to be your own. I have a dear friend miles and miles away from me that has to be her own advocate. She's a mother of four. They still haven't figured out what's wrong with her either. There really should be something set up for people who can't afford a medical advocate. It's just not right.

If you think the steroids are going to help and you aren't sure when that's going to happen, you may have to go there and face whoever is in charge of that to take place. I wish I could do it for you. I'd be happy to. Relief from something would be wonderful for you right now. Steroids can help but then again it lowers your immune system and does other scary stuff too. So I'd take careful consideration before you do it. I've had steroids, not IV, but your typical oral kind...and those really floored me. I felt better, my usual ailments were relieved, but my body felt so warped. Have you had this treatment before? Through an IV?

Have you seen a hematologist yet? I've ended up with one after many different doctor visits, but I'm thinking she may be the one to figure this out. The more I read up on this field, the more hopeful I'm feeling. I see her in two weeks. It feels like I'm seeing the end of the line. Lol.

Psych help may actually be a help. A psychologist tends to be a relief to talk to and could become a help in your advocacy for better care too. I like psychologists better than psychiatrists for some reason. Psychologists just tend to be more laid back to me, but that's just my opinion. Perhaps a good counselor could be a huge blessing to you and your wife right now. It's something worth consideration in my opinion. I have received a lot of help from them before.

Please keep coming here everytime you want to vent or need dry shoulders, okay? (((((More hugs))))) I know things are awful for you right now, but it will improve and you're going to smile more again... better times are coming. It's just a matter of hanging in there while you wait.

[genko_b]

So glad to hear your update. You are all in our thoughts and prayers. You are shouldering an awful lot. Just remember that all of us here are pulling for you to get some answers and relief from your physical woes and also from the financial stress. You are not alone.

Genko

[Beloved306]

Hi Navydad!

I'm new to these boards and I haven't been diagnosed, yet. I have an appointment to see a rheumy next Wednesday. I also suffer from multiple symptoms (too many to list). Like you, I also have tremendous problems with my bowels. I tried a magnesium citrate product that was recommended to me by an attendant at the health food store and it's the only thing that gets things moving. It's called Calm. It's a powder that you dissolve in hot water and it comes in different flavors. It works for me. I hope that it works for you!

Beloved306

[Dolly Dimples]

    Dear Navy Dad, sorry to see that it is still going on and on for you.. but so relieved to see that your dear wife is safe and home..
       
     You both really need to push the Docs who are treating you, and you certainly need help with the depressive state you seem to be in too..

        Is there a welfare or social aid in your area that would advise and help with?  we have that here in the UK..

          I really pray and hope that there is an improvement soon as you have had more than your share ...

             Don't let them pussyfoot around with you!!     Good Luck,  Dolly