[sam101360]

Hi:

I am quite down tonight.

I saw the rhumy today, he has determined that now there is kidney involvement...I have been leaking protien and red blood cells in my urine for the last 10 weeks, 3 Urinalysis all no good. Next step is a 24 hour peepee test to determine the actual quantities and a sonogram to determine the extent of the damage.

My IMg's have continued to rise, now I have to go every 6 weeks for the next 6 months to monitor my blood and determine if I need to go on cumadin or warafin, we are hopeful that this will not be necessary as I would love less meds not more.

I also am having another attack of chostroconditris. So I guess you could say this hasn't been one of my better days.

I do however get to wean off the 5mg of prendisone I have been on. He has determined that it isnt really doing much except maybe make me feel somewhat human, but hey, who needs that??? I am to go to 2.5 mg for 8 weeks then stop.

He also wants me off the HRT as he feels it is contraindicative with whats happening with my Lupus...so now I can forget sanity and sex..WooHoo!!!

OK..sorry all for crying in your pretzles, but no one else can understand the fear and sorrow we go through when things digress instead of improve.

Well deep breath, chest out, chin up, think I'll take my doggie for a nice long walk, it always mekes me happy to see him prancing around with his leash in his mouth.

Love you all, thanks for listening!

 

[Karin1]

Sam

(((((Hugs))))) I'm so sorry you're going through this and the fear involved in finding out there is some kidney involvement. I hope you can find a way to keep your spirits up through this hard time, sounds like walking the dog is great therapy That always works for me too!

You'll be in my thoughts, and please keep us posted on how you're doing!

Karin

 

[Katharine]

Oh dear (((((Sam))))), poor thing, that is an awful lot to have on your plate at once.

I'm afraid I don't have any miracle solution for you - I would gladly give it if I did but I really hope that the doc finds a way to give you some adequate treatment to help those kidneys soon.

It's great to see that you have such a good sense of humour even if it is for such a bad time but please do make sure that if you feel a lot worse with less pred and the HRT thing that you do complain - and I mean loudly - The docs may find it good on paper to be telling you to do some thing or the other but they are often very unconcerned about quality of life.

:hug:
Katharine

 

[sushi]

Sam i just wanted to let you know that you are in my thoughts also.

please know that we are all here to support you in any way we can

and if you have to whine then whine thats why we are here to let out

steam when we dont feel good. i hope that everything goes well and its not too serious. And also i know how you feel about the costo, when i get it i always cry because its awful pain.

please keep us informed and take care. lydia

 

[halfpintfl]

Hi Sam, well, now is another time where you have to convince yourself not to stress, stress=pain,as you know. Is he absoutly certain about the Kidney involvement> You poor thing. This site will support you if you have a problem, want to rant, want to cry, or want to spread good news. Right now you have to concentrate on your health, and now that means NO stress, it will just magnify all your pain. My fingers are crossed for good results to come back instead of the bad. Olease let us know how your Rheumyappt goes. I;m thinking about you.:wink2: ​

 

[karen.w.]

((((((sam))))))

I am so sorry to hear of this latest development :sad: what an awful lot to deal with.
I'm sorry I can't offer any advice I just wanted to let you know that I'm thinking about you & remember we are all here for you anytime at all :grhug:

I hope the kidney involvement is very minimal & I hope the chostrocondtris clears soon..take good care,hope you feel better soon.
sending you big healing,soothing hugs :hug:
luv karen x

 

[sam101360]

Thank you all for your supportive posts. Mentally I am better after a little time to sulk! Yes, he is relatively sure the kidneys are involved, he did think we caught it early as my urine tests have been clear until just recently.

My younget son moved here from NY and got here last night, its wonderful to know he's close by (I have 2 stepsons - that are like my own - well they are my own I guess).

I spent this morning shopping with him for furniture and linens and such...what fun! I of course am tire, but its a happy tired.

I cannot tell you how wonderful it is to be able to come here and get what equates to a big warm hug and a shoulder when needed.

Thank you all again!

Stephanie

 

[LolaLola]

DEar Sam,
Wising you all the best,
Lola x

 

[Clare.T]

Dear Stephanie

I am very sorry that the news isn't better on the lupus front. What a pleasure having your son nearby !

Many hugs
Clare
​

 

[Raglet]

dear stephanie

sounds like lupus is pretty miserable right now, so I am glad you were able to have some fun with your son this morning. I took my two (daughter and her friend who lives with us) to the mall tonight - we just ate in the food hall, but still it was nice and we had some laughs about nothing in particular. Never fails to cheer me up.

sending some big hugs zooming your way, and lots of positive healing energy

love from raglet

 

[acard]

Stephanie,:there:
I am truly so sorry for all that you are going through at this time. It does get overwhelming, but that is why you have us You can always come here and share and unload your troubles. I am glad your doctor seems to be on top of everything and that is great. I know what you are going through because I too have been there and the dr caught mine early, so I just have minimal issues that I can deal with.

You have a great attitude and I am so glad that you were able to go shopping with your son and enjoy yourself. I also love the way you deal with your stress is to walk with your dog-That is fantastic!!! You are doing great and just remember that I said so:wink2:


Hugs,
Becca

 

[Jirel]

I'm afraid that if the doctor told me he wanted to take my steroids away because all they were doing was make me feel better, I'd offer him a kick in the 'family jewels' because they aren't doing him any good right now and he needs to know how I'm feeling if I go off the steroids.

Thankfully my Rheumy believes in quality of life and although we try to keep the steroids low, will keep them high enough to try and keep the pain and inflamation down.

 

[sam101360]

Thanks again! All of you are my life line.

Jirel, Teehee...I know what you mean, steroids have always been bad for me...more than others (I had ovarian cancer and so steroids in general are a greater danger to my heart and bones), so he only tried them as a temporary measure to be sure all of the issues were from inflammation (my blood test numbers dont always reflect the issue). They proved the point and I assume we will be going somewhere else with meds once we know the extent of the kidney stuff.

I cannot thank you all enough for your support, kind thoughts and giggles. Hubby is walking around like there are eggs all over the floor, he doesn't quite know what to think yet...so I don't want to upset him by beng "blue"...although I find myself needing more hugs than usual...

Love you all bunches - Stephanie

 

[sushi]

:grouphug2: :grouphug2: :give_rose: :give_rose:



from all of us.

 

[JudifJ]

Sending hugs
:hug:

Thinking of you. Love Judi xx