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FINALLY BACK!

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FINALLY BACK!

Post by Little Audrey on Fri Jun 19, 2015 3:53 pm

Well, it has been a while since I've been around, and I am sorry for that.    Much has gone on in my life since I was here last, which has kept me pretty darned busy!   I'm not sure where to start, but I will try to briefly as possible fill you all in.    I don't have a record for typing short messages, so I'm sure this will end up being much longer than I plan!   I have missed you all very much!!!     I hope you're all doing well or at least getting closer to that goal of being well again!

I guess the biggest news I have is that of my best friend.    I can't remember if I mentioned that she was diagnosed with breast cancer about 2 years ago.  The doctors told her that this was an extremely aggressive form of cancer, and it was terminal.    Somehow, I thought she would find a way to beat it even though the doctors gave her no hope.   The cancer quickly metastasized to her lungs.   Chemo was shrinking the lung tumors.   That gave us all hope!    Then she developed a very large patch of skin cancer on her shoulder/chest area.   Shortly after they found more tumors under her collar bone.   About a month and a half ago, the cancer spread to her spine, liver, pancreas, and pelvic bone.    She passed away on May 24th.    She had been my best friend for close to 51 years.   We met in junior high school at the age of 11.    This has been VERY rough to deal with.    She was really the only friend I had who I could share everything with.    When I had a bad day or needed to gripe about something or had some good news to share, she was the first I would call or email.     It's been a tough adjustment for me.

Last week as my granddaughter was walking to our house to visit (they live 3 doors up the street), she was attacked by a neighbor's German Shepherd.    This dog has gone after 2 other dogs while they were being walked on a leash by their owners.   The Shepherd lives 2 doors up from us.    The neighbor between us and the Shepherd has a VERY tiny dog.   This neighbor told the Shepherd's owner that as long as they would not restrain the Shepherd, she would NOT go outside at all, and when she DID take her little dog out (and SHE is ALWAYS on a leash), she would carry mace with her for protection.   How sad is that?    This is a very quiet, country-like neighborhood.   For some reason when new people move in around here, they feel it is just fine to let their dogs run free.    This is not the first neighbor to do this!     My granddaughter is 10 years old.  She is a VERY quiet, sweet, little girl.   She was just walking by when the Shepherd ran through a hole in the fence and started attacking her.    She kept walking, trying to get a way from the dog.   She started yelling for help.    I did not hear her.  I was in the house waiting for her.   The dog stayed on her from his house to ours.  The dog's owner's boyfriend came out and got the dog off of my granddaughter just as she reached our house.     When my granddaughter arrived, she had bit marks and bruises over about a 8" area on her back/shoulder area.    The dog had also bitten her butt.  That wound was the worst of them all.    My daughter came to our house immediately and took her to the emergency room at our local hospital.    The woulds were not severe enough to need stitches.   They did patch her up and give her antibiotics.    She was VERY sore for several days.   The dog's owner's boyfriend was at our house immediately to check on my granddaughter.   He is a nurse and wanted to help, but my granddaughter did not want him looking at her wounds.  She is very shy.    He and the dog's owner also went over to the hospital when my daughter took my granddaughter over to be looked at.     They both felt awful about this, but if they had any sense, this would have never happened in the first place!!!!      The dog is no longer in our neighborhood.    The owner took her to stay with a friend who lives about half an hour from here.    She said the stay might be permanent.   My husband said it better darned well be permanent!   

I myself am still having some issues, but some things are improving, so I guess I shouldn't complain.    

My muscles and tendons are hurting much less now, which is nice!!  

I'm still having trouble with edema, but that too looks almost normal at times.   I still take diuretics 3 times a day for this, but before when I would take them, they didn't seem to do anything, so this makes me think maybe something is going on with my body that is helping to rid itself of excess water.   I really don't know.    

I started using the estrogen cream, which my urologist claims will help with the UTI situation.   She said it might take as long as 6 months to see any improvement.     My last UTI was 6 weeks from the previous one.  This was after using the cream for about a month.    She said we should be able to get the UTIs down to 1 or 2 a year using the cream.   I'm skeptical.   We'll see.

I've been having a LOT of trouble with my ears lately!     For quite a while now I've been having trouble with a LOT of mucus in my esophagus and head.    I cough stuff up every few minutes.   The doctors have no idea why this is happening.    Eleven days ago, my right ear clogged up completely.   I couldn't hear much of anything!   I knew there was fluid behind the ear drum, because I've dealt with this before.    I went to see the ENT doctor.   I couldn't see the woman I usually see, because she wasn't able to see me until a week later, and I can't stand that feeling of not being able to hear, so I booked an appointment with another doctor at this practice.   I had actually seen this man about 30-35 years ago when my left ear clogged up from the inside after a terrible bout with bronchitis.   That time, this ENT doctor looked at my ear and immeditately told me he would have to lance my eardrum to drain the ear.     This time there is no sickness involved.   The ear just clogged up.   This man looked at my ear and told me that there was a lot of fluid behind the eardrum.   He prescribed a nasal spray to open all the passageways in there to try to get the Eustachian tube to drain.   He said if it didn't drain on it's own in 2 weeks  with the use of the nasal spray, he would have to lance the eardrum!      I do NOT want to have this done AGAIN!!    It hurts!!!!   He said he wanted to see me back in 2 weeks.     Scared to death, I went out and bought some Mucinex, hoping that that would help to break up the mucus and drain the Eustachian tube.    I am very pleased to say that it IS improving!!!!      I could not be happier!!!!!     It's still not normal, but much better!       I decided to make an appointment with another ENT doctor at another practice or a second opinion.    It seems to me that the guy I saw last week and who lanced my eardrum 30 or so years ago, is a little too quick to lance the eardrums!!       I will be seeing this new doctor on Monday.    I just want to know if there are other options when this happens.

I saw my PA yesterday.   I needed to discuss a few things with her.     I have been having a lot of pain in my left breast for a few weeks now.    I have had this pain in both breasts in the past.   It all started about 10 years ago when I had my last mammogram.   This was a VERY painful mammogram, and I've had pain ever since.   Not sure if it was the mammogram that caused the problem, or if it just hurt so badly because of something going on in there.      They have both hurt on and off over the years, but this time it's just the left one, and it REALLY hurts!!    My guess would be that somehow it's hormones causing the problem, but I need to get it checked out.   Since I can't get mammograms because of the pain, I had asked for an MRI.    About 8 years ago, our insurance did cover a breast MRI for me.     This time they refused.   They said they would not cover it with the diagnosis of breast tenderness.    They sent me some information to read and discuss with a doctor to see if they could diagnose it in another way, so maybe the insurance WOULD cover it.   My PA looked at the info and said none of the listed diagnoses would work for me.   So she said I'd better get an ultrasound.   That is what I will do.    She did a breast exam and said she didn't feel anything abnormal in either breast, so that was reassuring, but I still need to get it checked out.   I will do that next week.

I also mentioned my ear issue to my PA yesterday.   I told her I was THRILLED that it had finally improved so much.   She took a look at both ears and told me that the bad one didn't look a whole lot worse than the good one at this time.     Although, I think there is always some fluid in each ear, so I don't know if that means a  whole lot.  Smile     She told me that she feels the ENT doctor should have given me longer than the 2 week deadline to have this cleared up.   She said she would think 6 weeks would have made more sense.   I told her my concern that this guy is a little too quick to lance eardrums.   She didn't come right out and say she agreed, but it seemed she did, and she said again that I should give it a little more time.     I told her I had made an appointment with another ENT or a second opinion.   She thought that was a good idea.

I asked my PA if we could do an iron panel at this time.   I told her the hematologist prescribed vitamin C with the iron supplements a few months ago, but I can't take the vitamin C because it irritates the bladder, and because of all the UTI issues I have, I don't need an irritated bladder!     I told her I am anxious to know how the iron is helping the low ferritin situation without taking the vitamin C to help it be absorbed.     She told me it usually take around 3 months for iron suppolements to show any change.     It has been 3 months since I started taking the iron, so she agreed to check it at this time.     I will be going early next week to have the blood drawn.   I also will be getting my calcium and PTH checked at that time, and I'll be getting blood drawn for the nephrologist at that time too.   

So even though things continue to go wrong, which is what we can expect as we age, some things have improved, so I'm doing ok.

One of my cats is not doing well at all, and I'm afraid I'll be losing him very soon.   His kidneys are failing.    He has gone from 14 pounds to 8 pounds.   He looks pitiful!    He walks around the house meowing NONSTOP all day and all night!!!    If he's not sleeping, he's meowing nonstop!    It is driving us NUTS!!!      I can't tell if he's in pain, or if he's just losing his little mind.    He's 15-1/2 years old, so it could be either.    I lost one of his sisters at the age of 10 from intestinal tumors and liver failure.   I lost his other sister 1-1/2 years ago.  We never really new exactly what was wrong with her.   She lost a LOT of weight and was very obviously in a LOT Of pain!     She would lie in a little ball all the time.    When she would attempt to walk, she would very quickly stop, drop to the floor and lie in a ball.   Shortly after this started, she stopped eating.    I had her put down 3 weeks before she would have turned 14.    So this little guy now has outlived all of his siblings, but I think his time is nearing.    I can't bear the thought of losing another of my little buddies, but I know I can't keep them forever. 

My other little cat scared me to death on the day my girlfriend died.   It was not a good day at all for me!     We had our family here for a picnic.  We were celebrating Memorial Day.    I was in a LOT of pain with my muscles and tendons to start with.   I was on needles and pins, because my girlfriend's son had texted me and told me my girlfriend was no long responsive.   He said she did not want a feeding tube or any means of life support, so she was nearing the end.    I really wanted to see her one more time before she passed, so I was praying she could hold on til early the next morning, when I could get over to the hospice facility to visit her.    I went down in my basement to get something out of the refrigerator and I saw a puddle of blood on the floor!!!    It was partially water, but quite a bit of bright, red blood!     I figured it was from my youngest kitty, because she had just run down the steps a few second before I went down.    So then I had that to worry about too that day!!   I didn't know if I should take her to the vet, or if I should watch her very closely to see if she would throw up anything else.   So all day while I was rushing around with the picnic stuff and worrying about my girlfriend, I also was scared to death that something terrible was going on with my cat and wondering what to do with her!!    Late that afternoon while we were sitting around the pool at the picnic, my girlfriend's son called to tell me she had passed.     I was very happy my family was here when I received that news.      After everybody left that night, I was very anxious to check on my little kitty.     She seemed to be ok.   The next morning she threw up again, but this time there was hardly any blood at all in it.   It was a VERY pale pink.     I figured whatever the problem was, she must have been improving.    I kept a close eye on her.    She has not thrown up anything else since.  That was a month ago, so I guess she's ok.    She acts perfectly normally.    I am VERY relieved!!!     I don't know if she had eaten something to cause the bloody vomit or what.   I can't imagine what she would have eaten, but I noticed lately that she is eating EVERYTHING she finds on the floor, whether it be a bug, lint, or whatever.  She just keeps eating everything!    I guess it is possible that she found something small that either injured her or made her really sick.    

Well, looks like I've gone and written another book here!      I think I made up for not being on here for so long!    I'm sorry.

I would love to hear how the rest of you are doing!    It doesn't seem like too many have posted recently.  We must get this going here again!!!

Love,
Audrey

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Re: FINALLY BACK!

Post by Hadleigh on Fri Jun 19, 2015 4:48 pm

Hello Audrey, nice to have you back.

Well what a lot to catch up on, sorry to hear about your girlfriend and your granddaughter, over here that dog would have been put to sleep, moving it elsewhere wouldn't be an option. We live in a very small village and we have the same problem with new owners and dogs moving in, they think its fine to let there dogs roam and annoy the neighbours, drives me nuts !

Glad to hear some things are improving for you and I hope your upcoming tests don't show anything new to worry about, this ageing lark is not easy, seems to be one thing after another Sad 

The forum has been slowly dying, hardly any visitors these days and it looks as if the old forum has been abandoned again ! Might soon be no PTH forums Rolling Eyes

What news from Admin HQ, well Edwin keeps me busy with continued medical dramas, we have been spending a lot of time in the renal unit ! 
I had my second lithotripsy this week and again it failed to shatter the kidney stone, very annoying, I get one more go then its plan B whatever that may be.

Not had any bloods done for months so no idea where my calcium and PTH are, still don't feel great but with other things going on its not surprising. 

So we plod on taking one day at a time, never quit know what to expect next Rolling Eyes

Do drop in now and again Audrey, we do miss everyone, hopefully the forum will pick up sometime but I fear people may have drifted away for good Crying or Very sad

Take care

Nelly
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Re: FINALLY BACK!

Post by Admin on Fri Jun 19, 2015 5:16 pm

Hi Audrey

I used to have a probem with fluid getting stuck in one ears and my solution was to wear earplugs in the shower.

Ear wax can be dealt with by a drop of olive oil in the ear each night.  It dissolves the wax.

Edwin
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Re: FINALLY BACK!

Post by Amanda Lynne on Sat Jun 20, 2015 1:35 pm

Hi Audrey
Lovely to hear from you. I'm so sorry to hear about your best friend, live seems very unfair at times. How awful for your Grandaughter, I hope she recovers from this physically and mentally very soon, attacks like this can make children very wary of all dogs. 
It's good to hear you are getting some improvement in your health even though it's a slow process at least it's progress. Hope all your new tests show you are getting your health back and it's good news for once, you definitely need that.
Nelly I'm sorry to hear Edwin has been suffering with problems, it's really time he got a break from all this rubbish and back on an even keel poor thing. 
What a pain the lithotripsy didn't work for you I'm keeping my fingers crossed that the next one will do the trick, it's not pleasant to have it done I've heard. I do hope more people will start posting again we don't want to loose the forum.
Love Amanda xxxx
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Re: FINALLY BACK!

Post by pilipala on Mon Jun 22, 2015 1:11 pm

Hi all,

I wonder how much we have a seasonally affected forum? When spring hits and we all get a boost of vit D it quiets down as we all are busy trying to get stuff done. Or is that just me?

Nice to hear from you Audrey, but sorry for all the things you've had to deal with.

I've been patiently trying to monitor my PTH/Ca levels by basically just going to the Dr and requesting them every so often. It's helped that the last 3 PTH have been out of 'normal' so slowly my evidence base is building. Still on the waiting list for the Bone clinic, been told Sept at the earliest.

I wanted to ask, Audrey, were you using Dr N's App to track your levels pre-op? How high did the likelihood get before he accepted you as a patient? I'm currently on 'likely' but didn't know whether to wait until it gets to 'very likely' before I contact them.

Best wishes,
Dee

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Re: FINALLY BACK!

Post by Little Audrey on Tue Jun 23, 2015 3:20 am

Well, I just had a very nice message typed here, hit something on my laptop, and lost the entire thing!!!!   Evil or Very Mad I still have to take care of my journal tonight, and I have to get up very early tomorrow, so I am not going to retype it all right now.     I will try to do so tomorrow.      Goodnight everyone!

Audrey

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Re: FINALLY BACK!

Post by Little Audrey on Fri Jun 26, 2015 7:29 pm

Well, this is hilarious!    I just typed a very long message, and when I went to post it, I was told it was too long, and it could not be posted!      I think I have outdone myself.   I guess I try to break it up into a few different posts.   This is so funny!!!      

Audrey

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Re: FINALLY BACK!

Post by Little Audrey on Fri Jun 26, 2015 7:31 pm

Ok, here we go.   I hope this works.



 
First of all, Nelly, don't ever worry about me leaving for good.   I might get busy and not be able to get on as often as I'd like, but I'll always be around!

I’m sorry you’re still not feeling well.  I wish I had a magic wand so I could make us all well again.   I’m not complaining at this point, since at least SOMETHING has improved, but I’m still tired of health problems.  I’ll talk more about this later on.    When are you due to get your levels checked again?   I hope soon.  That might give you some peace of mind, even though you’re still not quite back to normal.    You just might need more time for things to normalize.

 
Edwin, I’m sorry you’ve  been having so much trouble with the kidneys.  : (      I do hope things have improved a bit by now.    Hang in there!     Sometimes life sure stinks, but it will get better!!     I will be praying for everyone.

Also, the problem with the fluid in my ears is that the fluid is not in the ear canal; it is behind the eardrum in the Eustachian tube.     There is no wax or anything else in the ear canal.   My ears are perfectly clean.   If the fluid behind the eardrum won’t drain via the Eustachian tube on its own, a myringotomy (eardrum lancing) has to be performed to let the fluid out.      I am VERY happy to say, that after not being able to hear out of my right ear for 2 solid weeks, the fluid HAS drained on its own, and I CAN hear again!!!  
Good tip about the ear wax and the olive oil, Edwin!     Dr. Oz just suggested using coconut oil on tv the other day.    Interesting.  

I went to see the new ENT doctor on Monday to discuss this fluid.    That morning when I woke up, I noticed I was hearing quite a bit better!     The doctor examined both ears.     He said there appeared to just be a small amount of fluid behind the right eardrum, and the left one looked normal.      They performed a hearing test, and it showed what we expected.    I was hearing better in the right ear than the week before, but it was still bad.     The left ear was hearing just fine!         The doctor said if I wanted him to lance the eardrum to release the remaining fluid, he would be happy to do that for me, but if I wanted to wait a few more weeks, it just might drain on its own.     I opted to wait, as long as it didn’t annoy me to death not being able to hear.

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Re: FINALLY BACK!

Post by Little Audrey on Fri Jun 26, 2015 7:35 pm

The day after this ENT appointment, I started having pain in my LEFT ear, NOT the ear that had had the fluid for 2 weeks!     That night the pain got so bad, it was very apparent I had a full-blown ear infection!!   What the heck?!!   The ear was perfectly normal the day before at my appointment!   The entire outer ear was throbbing, the ear canal was throbbing, as were the side of my face, my neck, and my jaw!!     Everything was very hot and VERY painful!!       After having that horrible ear infection last August in my RIGHT ear, I am very familiar with this pain!      I had ½ of a Percocet tablet here left over from that bad ear infection last August.    I took it Tuesday night!      I can’t handle the pain of an ear infection!  
 

I also started taking Keflex that I have here for UTIs, and also I started using left over Ciprodex eardrops from that last infection in August.     By the next morning, the pain has started to subside.    I know Keflex is also used for ear infections, not just UTIs, and at my appointment on Monday, the ENT doctor and I discussed possibly using an antibiotic to help with the fluid in the ear.  

He said he realized it didn’t make any sense, but sometimes an antibiotic actually helps to rid the ear of fluid.    I told him I would rather not take an antibiotic if not absolutely necessary.    He gave me a script for erythromycin.   I didn’t get the script filled.    I told him I have Keflex here at home.   He told me that that would work too.      I still was not planning on taking it for the fluid in my ear.      


When this infection happened and got REALLY painful late on Tuesday night, and I couldn’t call the doctor, I started taking the Keflex on my own and using the Ciprodex ear drops.     I don’t like using the eardrops since they contain Cipro, which as you might remember I had been taking for years for UTIs and found it caused a LOT of symptoms that I had been suffering from since I started taking it!     But I really needed help, so I started using the drops.      


I have since called the doctor to make sure my self-treatment was ok by him.     It was.       Although, I had trouble making his nurse believe I had an ear infection, since my ear looked perfectly normal the day before I got the infection!!   She was REALLY annoying me about this!     I told her I was wondering if possibly I picked up the bacteria at their office, maybe on their instruments or the ear pieces they put in my ears when testing my hearing.    That would make sense to me.     I knew she wouldn’t admit that that was a possibility.      She told me they always use clean instruments, so that couldn’t be.    Yeah, ok.    Then she asked me if maybe the pain was a
reaction to the cream the doctor had put in my ears for the itchy ear canal issue.     I told her this was NO reaction to a cream!    It was a full-blown ear infection.   I told her it was the same pain I felt last August when the RIGHT ear was infected!     Once you have an ear infection, you can easily recognize another one!   There is no pain like the pain of a bad ear infection!     I told her this.  STILL, she was not convinced.     She hung up the phone and called me back a couple of hours later.   She asked me if I grind my teeth.  I knew what she was going to say next.    She asked me if maybe this pain was from teeth grinding.   REALLY??!!!     I told her I am aware that grinding teeth can cause jaw pain, but I’ve been grinding my teeth since I was a child, and I have NEVER felt pain like this except when I have ear infections!    I was going to ask her if she ever had an ear infection.   I was going to ask her if she thought she could identify that pain if she felt it again at another time.    I am not an idiot!!!!    I know what an ear infection feels like!!     Why can’t medical professionals just believe what we tell them?!   Why do they all think we’re stupid, and we have no idea what we’re talking about?!      GEEZ!!!

The nurse called back this morning and told me that the doctors PA said for me to continue taking the Keflex if it is helping.  She said, “IF it is an infection, that should help.”     She REALLY ticked me off when she said that!     IF it was an infection?!     I kept my cool and said, “It IS an infection!   I KNOW what ear infections feel like!”       Grrrrrr…………….

Little Audrey

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Re: FINALLY BACK!

Post by Little Audrey on Fri Jun 26, 2015 7:38 pm

I had to go to the hospital yesterday for breast ultrasounds.    I have had terrible pain in my breasts now for about 10  years.   I had a mammogram about 15 years ago.  It was my first.  It wasn’t bad at all.    I had another one 10 years ago.   It was TERRIBLY painful!      It was so awful, I sat and cried when it was over.    I have had awful pain in both breasts ever since.    If anything touches them, it REALLY hurts.      I asked for a breast MRI about 8 years ago, since it was too painful to have a mammogram.    Our insurance did cover that test.    It was normal.      I have not had any type of test since then.     So I asked for another MRI at this time.    Our insurance would not cover it this time.     So I asked for an ultrasound of each breast.   My PA gladly gave me a script for the ultrasounds.      I arrived at the hospital yesterday, and instead of just doing the ultrasounds, they told me a doctor wanted to speak to me first.    ?????    This was new.      Normally, you give them the script, and they do the test.     I asked them what the problem was.    They said the doctor just wanted to talk to me first.       So this young doctor came in and said, “I hear you don’t want to have a mammogram because it’s an uncomfortable test.”     I told him I CAN’T have a mammogram because I have terrible chronic breast pain.”     He asked me if I was aware that mammograms can detect things much sooner than ultrasounds.   I told him I was aware of that, but I CAN’T have mammograms!        After just trying to convince my ENT’s nurse that I DID have an ear infection, and now having to convince this doctor that I DO have terrible breast pain all the time, I was so frustrated, I started to tear up.      I apologized for doing so, but told the doctor I am just sick of always having to convince my doctors of things and beg for tests and help!!!      He then apologized to me and said he was sorry about my pain, and that he just wanted to make sure I was well-informed.     They then proceeded with the stupid ultrasounds!


We are still having trouble here about that darned dog that attacked my granddaughter a couple of weeks ago!     The owner is being very nice to pay the medical bills.    Of course she would.   That’s much cheaper than being sued!!!      She now ties both of her dogs up, or so she says, but the neighbor who lives right next to me said she saw the dogs out UNTIED late one night and then again at 4:00 in the morning!      The cops tell us their hands are tied, because it’s up to Animal Control to take care of this.     Even though those dogs are tied up, there is nothing keeping that big Shepherd from breaking loose or running out the door of the house when it is opened!!   We still are not safe here!!     The dog’s owner says she will eventually install an invisible fence.     I’m sorry, but an invisible fence will NOT keep a mean, wacko, German Shepherd from going after something or someone she wants!!!     The people who live on the other side of us have an invisible fence. They also have 2 dogs.   The small dog stays in the invisible fence, the big Lab gets out at least once a week or so!     This dog is very friendly.  We’re not afraid of her, but that German Shepherd which attacked my granddaughter is NOT friendly, and we’re all scared to death!    Now when we go outside, we have to keep watching out for that dog.     My son mows the neighbor’s grass who lives right beside the German Shepherd.    He has to carry a guy with him while he’s mowing,  just in case!     This is awful!!     Now when I walk op our street, I’ll have to carry a baseball bat or some mace!      My granddaughters can no longer walk down to visit us, even though they just live 3 doors up the street.    My daughter will now have to drive them down here.    This is just WRONG!!     I told my daughter to tell the Shepherd’s owner to put up a 6’ chain link fence, and the problem would be solved!!       I don’t know what the problem is here!      I guess it will take another attack before anything else will be done.    There’s nothing else we can do.


Nice to hear from you too, Amanda!     Thank you for your sympathy regarding my girlfriend.   It has been rough getting used to life without her, but I’m doing ok.    I know she would want me to go on and enjoy life, but it’s still rough when something happens during the day, and I want to zip her an email to tell her about it.   Then I realize I can’t.     
Yes, I think I am slowly recovering from all of my issues, and I am thrilled about that!!       I do hope you too are feeling better and getting along ok!


And good to hear from you too, Dee!   I’m sorry it has taken me so long to get back to you with an answer to your question about  Dr. Norman’s app.    I actually used the normogram from the site that is listed here on this forum to calculate my levels.   I did also use Dr. Norman’s charts on his website.     I’m glad you’re getting your levels checked often!     Good luck to you!!     I think I have all of my levels listed somewhere here on this forum.    You could compare yours to mine if you like.    I’ll have to see if I can locate them on here.     I just had blood drawn this morning.     They are checking many things, including my calcium and PTH levels.  I requested those.     I just want to make sure things are still good!   


It’s so nice to hear from you all!!     I will drop in whenever I’m able.   Got to go clean the house now.  YUK!   I’d rather talk to you all.   : )

Take care and onward we go!!!

Love,
Audrey

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Re: FINALLY BACK!

Post by Little Audrey on Fri Jun 26, 2015 7:40 pm

And now I can see why the heck the poor forum was not able to accept that book I just wrote!!   Wow, I didn't realize how long it was til I saw it all together here on the forum!!   

Audrey

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Post by Little Audrey on Fri Jul 03, 2015 2:44 am

Ok, this post shouldn't be nearly as long as that last book!!  

The ear infection in my left ear is healed, and my clogged right ear has drained, and I can hear normally now.    I am still using the nasal spray and the Mucinex to try to keep things thinned out and draining.

Two days after I finished the antibiotic for the ear infection, I got another UTI!!!   It was 4 weeks since my last UTI.  Although, we're pretty sure this one occurred from taking the antibiotic for the ear infection.     Taking antibiotic for the UTI now.

On Monday I had 9 tubes of blood drawn.    I didn't mind.  I was very anxious to get all of the results.

I was very happy with the results.   Well, for the most part.

My ferritin had climbed from 11 to 35 in just 3 months!    I was pretty certain it had, since I had been feeling so much more energetic lately, and I am not constantly out of breath anymore.   I was wondering if the iron supplements would be working the way the hematologist wanted them to, since I have not been taking the vitamin C with the iron as he prescribed.    I'm not taking the vitamin C, because it irritates the bladder, and an irritated bladder is more prone to infection, and I sure as heck don't want to make that problem worse!

My potassium has dropped from 4.2 to 3.7.  (Normal is 3.5-5.1)  I knew this would happen.  At my last hematology appointment, the doctor advised me to stop taking potassium supplements.   He said that since my potassium was up to 4.2 and where it belong now, there was no need to take the supplements any longer.    This didn't make any sense to me.   I know from past experience that as long as I'm taking a potassium depleting diuretic, I needed the potassium supplements.   I don't know what he was thinking!   I will see him on the 7th.  I will question this.   I think I need more potassium.

My sodium was still low/normal at 137.  (Normal is 135-146.)   Hypoaldosteronism causes low sodium.    I think I need to get this a little higher too.

Glucose was down to 87.   (Normal is 69-99.) I was happy about that.   Years ago it was up to 112.   Over the years it has gradually dropped.   I don't know why, but I'm good with that.

My BUN/creatinine ratio was in the normal range, which does not happen very often at all!   It was 19.  (Normal is 6-20.)

White cell count was a little low.  Probably from taking the antibiotic for the ear infection.

Red cell count, hemoglobin, and hematocrit were all up!!!    I guess the iron supplements really are working!    Red cell count was up from 4.76 to 5.00.   (Normal is 4.2-5.4)       Hemoglobin was up from 13.9 to 14.5.  (Normal is 12-16)      Hematocrit was up from 40.1 to 42.6.  (Normal is 35-46)

Free T3 was 3.2.  (Normal is 2.3-4.2)      Free T4 was 0.63.  (Normal is 0.61-1.12)      TSH was 0.17.  (Normal is 0.34-5.60)

My sed rate was the lowest it has been since it was first tested 35 years ago!    It was 14!   (Normal is 0-20) 

I was VERY upset to see that for the first time also, my antinuclear antibodies were elevated!! Ever since that wood stain incident 35 years ago, all of my doctors keep thinking I probably have rheumatoid arthritis, since it affected my joints so terribly.   I told them it was very unlikely that my pain was from rheumatoid arthritis since it started the day after I broke out in hives from head to toe (the day after using that wood stain), and all of my joints swelled up terribly.    That to me indicated an allergic reaction to something, NOT rheumatoid arthritis.    For the past 35 years they have been testing me for rheumatoid arthritis, and every time the test was negative.      Now that the antinuclear antibodies are elevated, I KNOW my PA is going to want me to see a rheumatologist.  She has been trying to get me to see one for years, but I keep telling her it isn't necessary, since my joint pain has diminished over the years.    The only joint pain I have now is the arthritis pain in my knees.      I did learn that viral and bacterial infections can cause elevated antinuclear antibodies, so I'm praying that is the case with me!       I really don't need something else to add to my list of diseases and issues!!

I am hoping my PA will noticed that my sed rate is as low as it is.    If there was some sort of inflammation going on in my body, as with rheumatoid arthritis, the sed rate should be elevated.     I guess I will have to see the rheumatologist to hopefully rule it out.

My PTH and calcium just came in last night, and I was not too happy to see that my PTH has risen to 54.   (Normal is 14-64)      I was very relieved to see that my calcium had dropped to the lowest it has been since my surgery almost 20 months ago, which was probably why the PTH was higher.    Calcium was 9.5.  (Normal is 8.6-10.4)         I checked Dr. Norman's charts, and these levels are acceptable together.    I had a calcium of 9.5 one time BEFORE my surgery.   At that time my PTH was 79.2, quite a bit higher than the current level of 54.  So I think all is still well, but I will continue to check these levels every 3 months just to be sure!  

I am still waiting for my renin and aldosterone levels to come in.   I'm not expecting them to look any better, since my blood pressure has been rather low lately.   

That pretty much wraps up my latest lab results.    Everything else that was tested looked good.   

Audrey

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Post by Hadleigh on Fri Jul 03, 2015 1:08 pm

Hello Audrey

That dog sounds a nightmare, are your dog control people not able to take action ? 

I have recurring uti's, only since just before my op last Oct, sometimes I barely get a few weeks free, nice new lady doc is sending me for scans but I still have the indistructable kidney stone so it could be that causing the problem Neutral  

Good to hear most of your tests have come back much improved, hope you get the antibody issue sorted.

Busy weekend here with youngest daughter leaving school tomorrow, so we have Speech Day in the morning then Leavers Ball in the evening, just had to panic buy an outfit as haven't had time to shop recently. Eldest and boyfriend are coming up from Devon to join in the fun so a bit of a house full.

Nelly
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Post by Amanda Lynne on Sat Jul 11, 2015 9:29 am

Sorry I haven't seen all of these posts Audrey hope you are feeling better now and hope they've done something about that dog.
Nelly hope the scans are sorted soon and did you get that dress ? Hope you had a fantastic time with your family xxxx
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Re: FINALLY BACK!

Post by Little Audrey on Sat Jul 11, 2015 2:37 pm

Thanks, Amanda.     Some things seem to be improving with me, and others are worsening.  Can't seem to get ahead.   I know you all understand this.

When I was on here last, I was taking an antibiotic for a UTI that we think occurred due to the antibiotic I had been taking for the ear infection.   So I had to start another round of the antibiotic for the UTI.    Well, 3 days after I finished the antibiotic for the UTI, it was back full force!    I had to start a third round of the antibiotic!!!    I finished that round yesterday, and now I'm holding my breath, praying the UTI doesn't return!!

My PA wants me to see a rheumatologist regarding the elevated antinuclear antibodies.  I knew she would.    Her nurse called to tell me this.    I mentioned to the nurse that my sed rate was nice and low.  Actually, it was the lowest it has been in 35 years, and I thought if I had some sort of connective tissue issue, it should be elevated.    I told her I really didn't think this was rheumatoid arthritis or lupus because of this.    However, I've been doing some research, and it seems my symptoms just might be from Sjogren's syndrome.    I've had trouble with my eyes, especially the left one, being VERY dry and gritty in the mornings for about 20 minutes after I awake.    It's so bad, I can't open it sometimes for 15 or 20 minutes.    About a year or so ago before I was diagnosed with hypoaldosteronism, I had a terrible time with extreme dryness in my mouth and especially my tongue.   The sides of my tongue would get so dry, my tongue would stick very firmly to the bottom of my mouth.   It actually hurt to try to pull it away.    After we started treatment close to a year ago for the low aldosterone, that all went away.      A few weeks ago it came back.    I am really thinking this is from the low aldosterone since it did resolve after starting treatment, and I think since my blood pressure is now dipping lower again (another symptom of low aldosterone), I think I just might need more Florinef to treat it.    However, dry, gritty eyes and dry mouth are symptoms of Sjogren's too.   

There is obviously a problem with my muscles since they are always stiff and painful, so I'm seriously thinking Sjogren's just might be my problem.     It seems anymore I just don't know what is causing what!!!

I am still very full of water.   I still take diuretics 3 times a day, and sometimes my feet, ankles, and lower legs are still very visibly full of water.   

The scale keeps creeping upward.   I am now 10 pounds heavier than I was this time last year.

My heels have started hurting a lot more again now too.  I was hoping I was finished with that when my parathyroid tumors were removed.     They are not as bad as they were before and a few months after my parathyroid surgery, but they are quite a bit worse than they've been for over a year.  

Not sure what is going on with my stupid body.   I just wish it would work as it is supposed to!!

We had a big picnic here to celebrate the 4th of July.    My brother and his wife came in for the occasion.    My brother mentioned to me that I looked really tired. He was concerned.   I told him I always look tired, because I'm always exhausted.   I always have bags under my eyes.  I do have a CPAP machine, but I can't use it, because as soon as I turn it on,  my ears clog up!     So I don't really know if I'm sleeping well.    I think I am, but I thought I was when I had the sleep study done, and they informed me I wasn't.

I had breast ultrasounds performed, because I've had terrible breast pain for a couple of months again now.   I've had this before.   I can't get mammograms because of this pain.     I was reminded that abnormalities show up much earlier on mammograms than on ultrasounds, but I figure ultrasounds are better than nothing.     The findings were good.   Nothing abnormal seen at this time.

Nelly, I wasn't aware you also had scans done.    What were they for, and how did they turn out?

And how is Edwin doing?   

Onward we all go, hoping and praying we will be well again some day soon! 

Audrey

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Post by Hadleigh on Mon Jul 13, 2015 5:38 pm

Hi Audrey

Still waiting for scan appt, this lot for bladder and ovarian cyst update. Final lithotripsy next week but not hopeful of success Neutral I'm having bloods done in a couple of weeks, about 5 months since the last lot so will be interesting to see where calcium and PTH are, I'm a bit like you Audrey, so many problems going on I don't know whats what !

Edwin is better after the blood transfusion but due second op on his dialysis arm plumbing  next week so things may not be so good afterwards Rolling Eyes. If his kidney function takes another dive then he will have to start dialysis, then our daily life will have to change big time.

Oh well as you say Audrey onwards we go Neutral 

Nelly
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Post by Little Audrey on Mon Jul 13, 2015 6:04 pm

My goodness, Nelly, how did life become so filled with medical issues for us?!!     I am so sorry you and Edwin both are dealing with so much!

I do hope your lithotripsy next week WILL be successful!!    I will have everything crossed for you!  

Do you have any idea how long you might have to wait for the bladder/ovary scan?    I don't usually have to wait long for any tests, thank goodness.   I would go crazy if I did have to.

I know how anxious you are to see the new calcium/PTH results.    Of all of my tests, I think those 2 are the ones I am most anxious to see the results of when I have blood drawn.   I'm so afraid I will need more surgery.    I hope you will be pleased with your results!

And poor Edwin.    My goodness.  Life is so unfair.   Let's hope he will NOT need to start dialysis, but if he does, I guess it will be like everything else in our lives; we don't like it, but we will adjust and make the best of it.     I will be praying for you both!

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Post by Little Audrey on Mon Jul 13, 2015 6:20 pm

A little update on my own stupid health issues.     That UTI I've been treating for a couple of weeks seems to enjoy hanging around!     I have now take 2 rounds of Keflex to kill this thing, and as of this morning, it appears it probably back full force again!!!     I am NOT happy about this!!!     Just like it did the last time, after taking the 3-day course of Keflex, my urine cleared up, and my bladder started to feel a little less painful.  It never did return to the normal state of being pain free.   

Then this morning I awoke to a VERY painful bladder again!!    I called my urologist's office.   I did go for a urine culture last week.    The urologist's nurse today informed me that this particular strain of bacteria is resistant to Keflex.  : (     That is why the 2 different rounds of Keflex did not get rid of the infection for me.       She prescribed Macrobid.    

The nurse also asked me if I have continued using the estrogen cream.  I told her I have.   She said to keep it up, and reminded me it could take months for it to work.   I told her it's been 2 months now, but the urologist said it could take up to 6 months to work.     I was a bit confused though.   She said to use a pea-size amount when I use it.   The doctor told me to squeeze out about an inch of cream on my finger.     Pea-size and 1 inch are NOT the same thing!     I asked the nurse about this.   She never did give me an answer.  She did say, "Well, how big is a pea?"    I said, "Well, it's not nearly as big as the last segment of my finger, and that is how much the doctor said to use."      She just said to use a small amount.  

I have not started the new antibiotic yet.    I am going to wait til I'm absolutely sure this is a full-blown infection, but there isn't much doubt in my mind.   

The scale continues to climb.   I still have quite a bit of water.   I'd like to believe that is why the scale is moving upward, but I have my doubts.   

And that is where I am right now.     Tired of taking antibiotics.    Tired of taking everything known to mankind to prevent UTIs to no avail.    Tired of being tired.   Tired of my muscles hurting.    Just tired of everything!      I know you all understand.

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Post by Hadleigh on Mon Jul 13, 2015 6:53 pm

Audrey if the estrogen cream isn't doing much ask for different one, internal topical works better Wink

Nelly
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Post by Little Audrey on Mon Jul 13, 2015 7:56 pm

Thanks, Nelly.   I will give it the 6 months as the doctor requested.    If there is no change, I will definitely suggest this.    

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Re: FINALLY BACK!

Post by Little Audrey on Wed Jul 22, 2015 2:31 am

Just dropping in to see how everybody is doing.   Summer is keeping me VERY busy.   I actually don't have time right now to type much.  It's pretty late, and I still need to take care of the journal tonight which I started the day of my surgery 20 months ago.  Each entry is pretty long and takes quite a bit of time to type.   It is a pain in the butt, but it has come in so handy over the past 20 months.   I'd never be able to remember all of this stuff without it!    I will be back just as soon as I get a chance to do so.        I just didn't want you all to think I've abandoned you!   I'm still around!   Smile 

Audrey

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Re: FINALLY BACK!

Post by Hadleigh on Wed Jul 22, 2015 7:54 am

Happy to hear from you whenever you have time Audrey, 

Taske care

Nelly
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Re: FINALLY BACK!

Post by Tigerlily on Sun Jul 26, 2015 1:14 pm

Hi Audrey

I've been away for some time, but have just caught up with everyone's news. So sorry to hear of your continued struggles, though, and hope some things a little better since this last post of yours.

Just wanted to send Love and Hugs, Tigerlily xxxx

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Re: FINALLY BACK!

Post by Little Audrey on Mon Aug 03, 2015 1:27 pm

Thanks, Tigerlily    I know everybody here is doing more than their share of suffering.   I know
I'm not alone.   I pray for us all.

Had a very eventful week last week.   My computer crashed.   It literally went up in smoke!!  
It crashed on Sunday.   It started smoking on Tuesday as I was trying to get it to start up again.
On Wednesday, my daughter-in-law had arterial stent placement surgery.    I never realized
what all was involved with that.    That poor girl has really been suffering!   They stopped her
blood pressure meds, because they want her pressure to be high to help with the infusion of the
stent.   Her head has been throbbing since surgery.   They think it's from the high blood pressure.
She had an epidural for this surgery.   After surgery they left a drainage tube in her spine to
drain any thoracic fluid accumulation.    I have no idea how they had her lying flat on her back
with that tube sticking out of her spine!     She had an IV inserted into the side of her neck,
which she said was very painful.    She had the 2 incisions in her groin from the surgery.   She
had a urinary catheter in place.   When they pulled the spinal drainage tube 2 days after surgery,
the drainage did not stop!    So they then had to perform a blood patch.   I had never heard of
this before.  They drew blood from her arm, then reinserted a needle into her spine and deposited
the blood into the opening which was draining.   This was to form a clot in the opening to stop
the drainage.   She said this was VERY painful.   This poor girl has been through so darned much
during her 39 years of life.   She now has all IVs and tubes pulled and could possibly be coming 
home from the hospital today.     I have offered to go to their house to stay with her if needed, so
my son can continue working    He works 2 jobs.  One of which is a lawn business, and he can't
get behind with this, or he'll never get caught up.      He has been suffering from depression, 
panic attacks, and vertigo for 2 years (since my daughter-in-law ruptured her aorta), so I'm
trying to make this as easy on them both as possible.    I also will continue to cook for them to
help out.     It will be a busy time, but if it will help them out, I don't mind at all, of course.

Oh, and I now have another computer, so I'm good to go!   Very Happy  

Will be seeing a new endo on the 13th.   Looking forward to this visit, in hopes he can help me
in some way.   I still think all of this edema and the weight gain is from the thyroid issue.   I'm
praying he can help with this.

Nothing much else new here.    Still having lots of muscle stiffness and pain.   Ears are still
clogging on and off.   Been having trouble again with my tongue sticking to the bottom of my
mouth and hurting, sores forming on the inside of my cheeks and inside my lower lip.   This
happened last year before we started the Florinef medication for the low aldosterone.   I figured
that was what was happening this time as well.    I checked my blood pressure.  The systolic
pressure was around 90-100, which is not bad, but the diastolic pressure was in the 50s and
even 40s again.    So we increased the Florinef.   My nephro said it would take 4 or 5 days to feel
a difference.    It's been a week.   My mouth finally feels normal today, but the tongue is still
sticking to the bottom of my mouth.   It's not quite as bad though.    Blood pressure looks normal
again.

I have been having trouble for over 4-1/2 years with VERY dry eyes in the morning when I
awake.   The left one is so dry and gritty, I can't open it sometimes for maybe 20 minutes.   I
blamed it on the hyperparathyroidism, then I blamed it on the thyroid and the adrenal problem.  
Now I'm wondering if I might have Sjogren's!!    Crap!!   That would explain the very stiff, painful
muscles.   Why not?   Might as well add something else to the list. 

I do hope you all are doing well and improving with your own issues.

Audrey

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