worse for wear

[navydad]

last week for 3 days I had to go to the infusion center to get 3000 mg of steroids,, yes 3000,, right now I am aliving mess, I have no clue whats going on with my body,, dry mouth is worse then ever,, the saliva is so thick I can barely swallow,, even trying to think is hard,, they have me on a taper dose right now,, along with all the other meds I am taking,, I sometimes wondr if this waas the right course of action,, my stomach problems continue,, been that way for almost two years now,, the rheummy thinks I may have nerve damage in that area also,, so hes trying to move up the Q sart test to see if my autonomic system is involved,, God I hope not,, I am expected to go back to work in two weeks,, even the rheummy asked how can you work,, I haven o idea doc,, it wasent like I tried to not work for the past six months
after the infusions, we went to Philly to move my son home, I have no recall of even driving out tehre or coming home,, th effects of the steroids are horrible,, and I would never suggest anyone doing it,, not at that high of a dose,,
  the neuropathy in my legs has spread to my hips,, yesterday they felt like they were broke,, oh,, my son and wife were putting a table in the kitchen, I dropped the old one across my shin,, the bump is huge,, black and blue with a nasty scrape o it,, and the sad part,, I cant feel any of it,, I told my doctor last year when i hit my hand with a hammer and it didnt hurt,, course i got the old your nuts look,,
  I got blood work done yesterday,, just a CBC,, the nurse called today and said your labs are fine,, WHAT,, maybe there fine,, but I feel like death,,
My wife is  getting relly concerned about my weight loss,, its not like i dont eat,, but sometimes i;m just afraid too,, nothing seems to move through it,, and i cant live on citrate all the time to have  a bowel movement,,
  i;m tired of going to octors,, I blew off a ct scan  yesterday of the chest,, just had one last month,, sent the results to the doctor,, jus tired of being pooked and prodded,, and nothing really getting solved,,
well my oldest son is home,, I think I have the financial mess under control,, barely,, the late bills from the post office seem to have slowed down,, and was able to pay off one credit card,,
I hate looking in the mirrow,, my face is always red with this sickening oily appreance,,
for two years I was told,, oh you have some anxiety issues,, or your back is causing your leg pain,, (sciatia),,, only when i had the biopsy did they find the neuropathy,, well thats my rant for now,, I;m going back to wandering around the house like a idiot,, pretty hard to drive anywhere now,, cant feel the pedals or almost put myself through the windshield wehni hi the brakes,,

[Chickpea]

Hi Navydad

It's good to hear that you're sorting out the financial issues.  That must have taken a lot of time - and a lot of courage.  You and your wife were in our thoughts as you went through that awful time.  And you're not alone:  every day in the news here in the UK there are more stories about people losing their jobs, their homes etc.

What does having 3000 mg of steroids feel like?!  I was pretty wild when I was on 60mg a day so I can't imagine what I'd be like on 50 times that much!  (Quick pause while I check my maths.)  I couldn't stop baking cookies and cake, huge casseroles and pots of soup.  I didn't have much appetite and I didn't put much weight on; I think it was the Jewish mother in me ran wild and wanted to feed everyone!

I hope it wasn't you who was driving to Philadelphia with that amount of steroids in you, and numb feet.  Next time you're planning that journey maybe you should let us know so we can make sure we're not on the same route!  My middle son lives in Princeton and sometimes goes to an amazing secondhand bookshop in Philadelphia so I can warn him too.  Is it good to have your son home?  My eldest son is 27 and based in London, just an hour away by train so we see him most weeks.  It's always a joy.

Take care - Chickpea

[jonnell]

Navydad,  Im sorry to hear you are having it so bad.  I feel for you.  Where do you live on the east coast?  I live in New Jersey.  I hear you talk about Philly alot.  I know they have some good hospitals there.  Maybe its time to start fresh with a new doctor get a new opion on things.  I really believe the clue to getting good treatement is getting a good Rhumy one that will treat the symptoms not just the tests.   Im always here if you need a friend.  I suffer from depression so I know what it is like to be so down.   Chin up     Hugs and Kissess     Jonnell and Jenna

[navydad]

I should have said Reading Pa. He worked for Johnson and Johnson,, but the job was killing him, driving over a 1000 miles a week to hospitals from Harrisburgh to Philly and Baltimore repairing Medical machinery,, working  16 17 hours a day,, coming home to a empty aparment,, eat sleep and do it all again,, great money,, 90K a year,, but it was killing him,, so he chucked it all, and decided to come home,, which is fine by me,, he was heading toward a heart attack by the age of 35,, and yes I drove out there,, it was tough,, and I drove home,, I really dont even remember much of the trip,, I coulndt move anything,, just wandered around like a Idiot,, noting made sense,, today the fog is clearing some, not much,, but today I can actually function some,, my wife,, poor thing, has no clue hat its like to have something like this,, but its ok,, I;m just trying to stay low kepy,, the roids did send me into a rage yesterday,, horrible stuff,, just hope it does somethng,,

[JannaLee]

A lot of us know what it's like to be so down, Navy.

We completely understand how hard it is and how time can slip by while we are walking in a miserable fog.

Janna

[KYMOM]

Navy Dad,  Happy to hear the financials are getting better.  3000 mg!! Can't imagine what that must have been like.  That combined with moving your son in and your continued medical problems.  Triple stress. 
Don't worry so much about the mirror.  It lies.  When I look in one all I see is some lady much older than I am.  Don't know how she keeps sneaking in.
Maybe with you son living with you it will take some of the burden and stress off of you.
Can relate to the bruises.  I constantly have bruises on my arms and legs and can't recall how they got there.  Tables, chairs and other pieces of furniture just seem to jump in front of me.
Roxanne

[rnathans]

I had alot of neuro symptoms including an autonomic neuropathy that caused gastroparesis ( stomach slows to a crawl) and lost a ton of weight. Eventually I needed a feeding tube. But I had a wonderful neurologist out at Hershey who also consulted with a rheumatologist there. They said only a strong immunosuppressant would help the neuro symptoms. I was put on cytoxan and it probably saved my life. I no longer have a feeding tube and can eat normally.

Since you are in PA you might want to look into Hershey. The neurologist is Zachary Simmons, the rheumatologist is Barbara Ostrov.

The cytoxan did make me extremely tired for awhile and also nauseas for a few days. It is a strong drug-but I needed it at the time and it did the trick. Now I am on milder oral immunosuppressants.
Ruth

[irish]

navydad, I am sorry that you feel so lousy, but it is entirely possible that the steroids will improve your health status. It may take some time though. Basically, the steroids are to stop the inflammation that is destroying your body in all areas including the neuropathy issues. I agree with the last post. Why have the docs not put you on a med that will stop your autoimmune system from working such havoc with you. Is it because you have the immune problems that cause you to have infections.

When you say your blood work is good do you include the blood work that was done to check your t-cells and IgG. I think your mentioned that you have an immune problem. I have also wondered if they plan to put you on the infusions of gammaglobulin again. The IVIG(intravenous gammaglobulin) is used to treat neuropathy of many diseases. There are different types of products that they can use like Gamunex and Gammagard.

Hope that having your son home helps you and your wife out. Sounds like he was due to a big time burn out. Life is not worth it. Better to live simply and have some essence of life. Take care. Irish