Gonna be long wait for me & others sagas as well - help??

[sheryl7]

I am so sorry to hear your I.C. is taking over your life.
I too do not know how i had gotten the last to staph bladder infections i got. Since then and before then, cultures always negative.
But been put on cipro a millions times, always feel better than worse once off.
There is therapy I have read about you may want to google it up, about being on low level antibiotics, but i am not up on it, so you make want to hunt and peck and see what you come up with.
I have wittled down on the amt of meds i have been on.
Still on quite a few though, the only one that seems to help the mirgarines nausea appetite, muscles, is plain old Valium,but they want to shove 5 or 6 other worse drugs that arnt controlled substances down my throat.
So I am at a loss.
I will be leaving my apt in a little while to see about getting some meds.
And will try to post when i get back a little after 1pm.
Meanwhile I hope you get to getting feeling better, find some answers, ask you uro about low level antibiotic therapy. Since you seem to feel better on it.
From just the fragmented memory of what I can recall about it, its not something you do forever. you do titrate off.
Oh yeah 200 mgs of nuertotin are not going to anything for you, in my opionion you may as well not be on it, no point in it, like a placebo. i am on 1600 mgs of it, and the only thing its helping is the bladder, only reason i stay on it. It does nothing for my sciatica.
I don't know how much longer I will be able to drive if the sciatica gets much worse. Now like you my hips getting affected, my lumbar stenosis is choking my nerves to death.
And i have not had a hip or knee replacement.
I think you just got the bad luck of the draw.
Some people like yourself, maybe me too ( dont know yet?) are more prone or more susceptible to fall prey to an autoimmune attack on our bodies if something new (thr) is introduced to it.
But I think me personally is more congenital in nature, i have always been sickly. you however only had this since your replacement.
I have an interstim in me does no good, will not have replaced again, prob removed if i can. However it is not harming me in the least bit.
I have ave a friend healing from her second stim, it keeps her alive and out of kidney failure.
But its been over 2 weeks she is still miserable, she is a slow healer.
I was fine with in a week of my revision, as far as healing.
i take that back, i did land in er with an infection 2nd day.
Body tends to forget the bad stuff.
But after that I was good to go, never helped any, but not hurting me, my body not rejecting it, its no the cause of all my malodies. And in my case as far as the gastropareis the diet is effective.
I do drink caffeine now, figured, it wasn't making no diff whether i had it or not, why its called the elimination diet, dont know til you reintroduce it. And not diff one way are the other.
Now the citrus, and tomatoes are no brainers for me got off those years ago. Now getting off them my not have helped much with ic, but it will make it a heck of lot worse to have. And its bad for my gut.
The gluten free casein free diet helps the gut. Ic not so much.
But in your case, in my opinion not a dr, your body seems to be rejecting that hip.
I am not dr, and i am not saying it is the cause. dont want anyone yelling at me.
But from all that you said, what else can it be?
If i dont have a knee replacement i will be in a wheel chair.
And I will have to take the chance on the knee working for me or not. Just keep my fingers crossed.
I will post later. Try to hang in there, why we got this forum to lean on each other, will be be praying you lose no hips, there are specialists out there I woud hope to prevent that from happening to you..talk to soon..
Hang in there

 

[BarbieJ]

Thanks. I agree with you. I guess I know now I am a rare bird. Wish I had known that before. Take care, my friend.

 

[sheryl7]

Been a long day.
I did get some Valium for the migraines. But still have to see the nuero 7-1, for him to address it.
Well not exactly yet. The Kaiser i go to was out of it.
Have to have ex pick up near his work and drop by to me on his way home.
So sitting here with a headache wanting to hurl, finally ate , then i think i ate too much.
I iced the knee when i got home, i did have in brace all day, but I like to give it a break at night.
Its really hurting. Every time I bend it I hear crunchy noises, it sounds like bones are just crumbling apart in there, and feel like it too, its looks rather deformed.
May stick the brace back on see if pain subsides. Loratab doing nothing. I see the pain management Dr 7-18.
going back to original one, he will likely change things around i think.
Unfortunately i have to be on the knees more than i would care to be, but hopefully that situation will end soon.
Ex just dropped off my meds.
Brought me some food, too, still waiting on food stamp card, I thought it was to be mailed to me, but i guess i should call the dfacs office and see if its there.
Ex meant well, but bought me a bunch of junk food i really cant eat, well he knows i have a sweet tooth and will break my stringent diet now and then and have a Swiss roll little cake.
Daughter decided she dint like them any more, so he bought me the whole box. Weird thing is i went to eat one, and it didn't taste so good.
Well i guess the headache and i already ate prob a factor. He got some soups, some i can use others i cant, like potato will totally kill my gut, but i didn't want to say anything, as he meant well.
So i think I will call the dfacs office in the morning and see if my food stamp card is sitting there, and if i am suppose to pick it up, was approved like two weeks ago, i would have thought it would be sent by now, but maybe I was suppose to pick it up?
All's I know i i got to get some healthy food up in here. Some fresh fruits, a few vegetables.
I have to have all vegetables well cooked before i can eat them, I can eat raw fruit, but not raw vegetables, they wont digest in my gut.
I made gastro appt for June , but cannot find it listed in my up coming appointments.
There is an appt gonna cancel for now unless the pain management Dr tells me to go ahead and do it.
It was a ct/myleo of my lumbar/sacral area to get a better look at the stenosis issue. But the ordering Dr is a Kaiser affiliate, not exactly Kaiser, and i am receiving financial aid from Kaiser for 6 months to cover co-pays meds, procedures, anything up to 6 months, in hopes SSDI/SSI kicks in. So the neurosurgeon who ordered it I cant afford to see him.
But if the Pain Dr says go ahead, as he may want to see it, then i will keep that test.
Thing is I have to have a driver, as they inject dye in your spine, and A they have you wait to make sure you dont have reaction, B I need a driver. And I really dont have one. Son was at first , yeah like I can help out driving, but i can't really count one that, and i have no one else to drive me.
If it was a procedure or an operation, my ex would do it, or at the very least make my son do it. But for the test unless i really push the issue, and have ex make son take me, jut dont know if its worth all that, unless like I mentioned the pain Dr would like to see it.
That's why I want the interstim out, even tho i just had revised, its not helping( or hurting), but i cant have MRI's and from what I hear ct/myelo isn't all that pleasant of a test. Reactions, Nausea from tilting table, headaches, must be laying the following 24 hrs. So if I can't have anything done right away, it may just not be worth the effort to have it done at this time.
Alright med kicking in, gonna try to relax and see if i feel any better. Got a lot ahead of me tomorrow.
Barbie J. i am thinking about you, keeping happy thoughts you get relief and can hopefully nail down a good plan of action to get some relief, in the way of answers and help addressing them.
Everyone have a good night

 

[Titianlady]

Sweetie, is there ANY way you can get that knee addressed!! You have a lot of health issues that you are addressing, but seem to put off the knee. If your knee is indeed deforming, doing what you have to to get that knee done should be on the front burner.

I'll keep fingers crossed that you get your SS disability my dear.

 

[sheryl7]

Toni if there were a way I could gt it addressed now I would.
unfortunately Kaiser dosnt have their own Os's I have to see an affiliate and I cant afford to, and even if i cam up with co-pay for visit, i couldn't afford the tkr, would not be covered unless it as an actual kaiser physician not an affiliate.
Why they dont have their own OS's i have no clue, I sure wish they did, a that would now out of necessity become priority once again as it was before.
So i just have to wait and hope I get state and government aid, primarily;y for my bladder condition as cant be working when in he loo all day long, and its painful.
But hoping can get all other issues addressed as well once covered.
So I will have to bide my time, and keep my fingers crossed.
Thanks for caring

 

[Titianlady]

Oh, I understand sheryl7 It just breaks my heart when I hear you explain the condition of that poor knee. I can only imagine how painful it must be for you. I just want you to have a nice shiny new knee, and one less thing to worry about dearheart.

 

[Recycled]

So I will have to bide my time, and keep my fingers crossed.
Thanks for caring

Sheryl,
I've seen you constantly offering up encouragement to many others on here with their TKR concerns and recoveries, all the while waiting tediously for your own. Dealing with the many issues in our lives can be burdensome and disheartening at times. Heaven knows you have been going thru alot. I just wanted to speak up and say, I remember w-aaaaa-y back with my TKR......all the support and encouragement you provided to me. So you hang in there girl and your time will come. And when it does, it will be our turn to support you.
But I gotta say.....you'll be such and expert on TKRs by then, the best we will be able to provide is just plain ole moral support. Or in my case.....annoying, obnoxious pestering support.
Hang in there.

 

[BarbieJ]

sheryl7, I wanted you to know that I am thinking of you. Wondering how you are. I ended up on cipro for a UTI on Memorial Day weekend, yes always a weekend. It is hard to differentiate since I feel burning bladder each and every day. It has been 13 days since I finished my cipro and I feel horrendous. I went to urologist a few days ago and urine was negative. The doctor wants to do a cystoscopy and am scared to death. I will need antibiotics since I have a joint replacement.
Each day I am not on antibiotics, my hip feels worse. I am waiting for the unthinkable to happen.

I am worried about you.

 

[sheryl7]

Hi every one I was unaware of the last few posts to my thread, usually gets sent to me in an e-mail.
, was not trying to ignore or worry any one.
My only source of Internet right now is my phone. So it kinda difficult for me to maneuver around on it.
As I am used to a big screen desk top, that apparently just can't get reception where I am at.
Also trying to read on a tiny phone compared to a big screen desk top, I believe has contributed to worsening of my migraines.
Still waiting for the first of July to see neurologist for help.
Thank you recycled for your encouragement.
Barbie j, I am still thinking about you. Sorry to hear your memorial day weekend got a damper on visit.
I again would look in to the low level antibiotic therapy.
As I said don't recall much of it.
Google it. And ask uro.
As you seem to feel better on them. But ciprofloxacin is not what they used. Can't remember.
Your team of Drs needs to come up with a researching plan of action for you.
Have u been checked for any form of mrsa type of infection going on due to the hip?
Are they sure there is no type of infection going on due to the hip?
Ciprofloxacin is only going to help so much, and the more it's used the less effective it's going to be.
I think your doctors need to confer with each other. And maybe see if maybe trying out s more affective antibiotic may help???
I have hired a lawyer to help with my ssi, and disability.
Just this last week excepted my case. I don't pay until they win.
So that was encouraging as they only except one on seven cases.
So appears I have a strong case.
I don't like being at the mercy of my ex paying my rent, and other crazy things I have got to do here to earn my keep.
I am very stressed out, in pain, anxious, and no real grasp on what exactly the future holds is very disturbing to me, just compiling more stress on me.
I have seen either of my kids bb on over 3 weeks. My daughter occasionally texts me.
Don't hear anything from son.
So right now my plate runneth over.
Sometimes I just feel at my wits end.
Sorry to be such a downer right now.
I just needed to vent, and try to get some worry off my chest.
Will keep posted as to how neurologist appt goes on the first.
Again thank you everyone for all your support, when I do desperately need it...

 

[puffin]

Sorry that things are so tough at the moment - but thinking of you

 

[sheryl7]

Thank you puffin.
I know you are enduring a lot your self.
Taking a deep breath is almost all I can do sometimes just to try and slow my brain down.
I have low blood pressure but sure high heart rate.
Even at rest at the Drs it's like 102
My heart rate is like high like a little mouse.
That's what I feel like, a little mouse running in a maze.
Can't wait til first to see neurologist.
Feel better after cleaning apt today.
Exhausted but cleaner.
I need to update photo. I am 20
Lbs less than pic.
I feel sleepy. Probably because I weighed so hard cleaning.
Going to bed early.
It seems that my knees want to be in braces even while at rest which I don't like because I need a break from them.
But I had a couple of days of just doing nothing so I took a break from them.
But even just doing nothing they seemed to swell and preferred to be in the braces.
I guess the knee rules, it dictates.
So braces at rest it will be.
Sometime wear them to bed, it's dark in my apt, and I am encouraged to use as little electricity as possible. So I am afraid I will fall if I get up during the night, so I will sometimes wear them to bed for protection.
Ok I am rambling.
Hope everyone is having a decent start to the week.
Take care..

 

[sheryl7]

Just checking in, I feel a little better since Monday.
Headaches have subsided a little.
But still real eager to see neurologist on Monday.
It's real hot and humid here. Feel a little nauseated and dizzy at the moment.
Hoping as it cools down some will feel a little better.
Will stop by Monday or Tuesday to report what neurologist had to say.
Hopefully she will order an mri so we can rule things out or in. Still no clue why lost use of hand, that took me 5 weeks to strengthen back up.
I do not think it was nerve related. As it went dead in the middle of the afternoon. Not while waking, like I had slept on it. Plus there was never any numbness, or tingly feeling.
I could feel everything. I feel it was muscular in nature.
Hope everyone has a great weekend.
Take care...

 

[Titianlady]

sheryl7. Oh, please feel better Sheryl! You have soo much on your plate. You amaze me with all the things you have to face, yet you still find the energy to come here to give advise to others. That is something special.

I'll keep praying that things start falling into place for you..you give so much to others,it's time for your needs to be taken care of.

We're thinking of you my dear.

 

[sheryl7]

Thank you so much Toni for the prayers, they are much needed, and appreciated.
Have a good night..

 

[sheryl7]

Finally going to neurologist in the morning.
Kind of a not good weekend. Got in a disagreement with ex.
As I rely on him til I can get financial help, upsetting him is not something I want to do
Now I am concerned about my personal welfare.
On lighter note, I have uploaded a recent picture of myself taken yesterday.
Too keep my mind off of current issues, I went crazy taking pics of myself in the mirror.
There is a picture or more that shows how odd the left knee looks and got a pic with right knee and you can tell just by comparing in fuzzy photo images there is something def wrong with left knee more so than right.
Will try and figure how to attach picture to post. And may try to get a close up on the knee.
I don't know why, but every time I upload a picture it comes out sideways??
I know somebody fixed it before.
I am only dealing with an android phone for internet. It's not sideways when I upload it.
Had no problem uploading to face book, they all came out normal.
I don't know if a mod can help me or Administrators(jo). Hmm that seemed to work. The tagging I mean it popped up when typed admin in.
Ok let me try and upload some knee comparisons...

 

[sheryl7]

Ok, here goes nothing. Try uploading my knee comparisons.
And a close up of knee from my view point .
I am super tired today. Have to go to bed early tonight. Long drive to Drs.
If these upload well I will try and get close ups in the mirror of the two knees together. Though when when I am facing forward in the mirror, the differences don't seem as noticeable as the side view does.

 

[sheryl7]

I was trying do delete extra photo and start over again. So I will try again on a new post. If the duplicate still show up in prior post can someone please delete them. I wanted them in same post do the differences on the side view could be seen.
I was trying to be dressy in the photos yesterday, wasn't really interesting for them to be knee comparisons until I was reviewing them and noticed the differences in the side views the way I was standing the differences stuck out to me.

 

[sheryl7]

I guess they are in there correctly. I am not good at technical stuff.
I couldn't get the close up from my view, it was too big of file.
I did get the front view and you can see its not as noticeable as side views are.

 

[Josephine]

I don't know if a mod can help me or Administrators(jo). Hmm that seemed to work. The tagging I mean it popped up when typed admin in.

Well, it didn't work but somehow got an alert anyway! You need to use the member's actual name!

I don't know why, but every time I upload a picture it comes out sideways?? I know somebody fixed it before.

and I fixed it for you again! Several people seem to be having this issue - no idea why. Perhaps it's the way the phone/tablet is held - left, right, upside-down!

Can't tell anything from the photos I'm afraid. I'm really only good with xrays and really a person needs to be able to be 'hands on' when looking at anything. It's all in the hands! Sorry I can't be more helpful.

 

[sheryl7]

Thanks Josephine
I would have replied sooner but not getting my email alerts.
Been to neurologist. Not find of her.
Put me on inderal for prevention of migraines.
I told her I couldn't take med that lower bp. But she did it anyway.
Stopped taking them 2 days ago, was fainting.
She wrote back.suggesting botox. I wrote back ok, when she hadn't replied. I go for pain management appt tomorrow. And would like the injection then.
She could be courteous and write back. Im in a lot of pain.
Hopefully PM will switch some things around for me.