BS: Mudcat Mojo - VaTam's daughter

Subject: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 13 Mar 12 - 04:32 PM

Hi all

Here I am again, hat in hand requesting some Mudcat mojo for my daughter Hilary. You may remember last January she landed in hospital with liver, spleen, gall bladder and other abdominal problems.

VirginiaTam's daughter - health prob

She was admitted to hospital again today with enlarged spleen. We were chatting last night I thought she said her liver enzymes were low, which is good news. She has been on medications for depression, however which can adversely effect the liver.

So if you could please send some mental and spiritual huggles to my 'lilbit' I'd really appreciate it.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 13 Mar 12 - 05:07 PM

Yes, Tamara, of course. (((Tamara and Hilary and fiance)))

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ranger1
Date: 13 Mar 12 - 05:30 PM

Tam, you and Hilary have all the good thoughts I can spare.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 13 Mar 12 - 05:37 PM

Thank you both. I expect Galen (the fiance) is with her. They moved in together to a smaller apartment a couple of months ago. Wish she would post something on FB.
If she has been admitted, I don't want to disturb her in the middle of tests by ringing her. I have Galen's number but I don't know where I put it.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 13 Mar 12 - 06:39 PM

I'm there with good vibes.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bobert
Date: 13 Mar 12 - 07:32 PM

Got 'um on the way, VT...

B~

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Maryrrf
Date: 13 Mar 12 - 07:45 PM

Best wishes for your daughter, VT.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 13 Mar 12 - 10:30 PM

You got it coming from me, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 13 Mar 12 - 11:08 PM

VT, so very sorry to hear of this latest development. You and your family have already been through so much!
I sincerely hope that things start improving for all of you -- immediately if not sooner.

I'm not in the habit of praying, but I'll make an exception...

Keep us posted.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 13 Mar 12 - 11:41 PM

And from me too. No road is downhill forever.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 14 Mar 12 - 04:30 AM

Thinking of you and yours VT.
All the very best from Charlie in Dunfermline.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: wysiwyg
Date: 14 Mar 12 - 05:37 AM

<3 +++

~S~

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 14 Mar 12 - 05:48 AM

Wishing her a speedy recovery.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: alanabit
Date: 14 Mar 12 - 05:50 AM

Hope it all goes well for her VT. Unfortunately many doctors prescribe anti-depressants for patients, because they do not have the time or resources to give them real help. I had hepatitis B back in the eighties, so I know more than I want to about drugs and a dodgy liver. During recovery, I frequently experienced relapses and some quite interesting pain... Of course pain killers were out of the question, because it was the last thing the liver needed. The good news is that the liver can regenerate itself - as it has done in my case. Wishing both you and your daughter well.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 14 Mar 12 - 05:58 AM

Holding all of you in my thoughts.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Keith A of Hertford
Date: 14 Mar 12 - 06:21 AM

All my best wishes for you.
keith.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 14 Mar 12 - 08:57 AM

love & best wishes to all from this side of the big pond

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,olddude
Date: 14 Mar 12 - 09:38 AM

got my prayers my dear friend, right now

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Mar 12 - 09:45 AM

Still no posts on her facebook or boyfriend's FB. I sent messages to both.

I am freaking out. Can't wait for work to end today so I can ring her. Want to fuss about the fact that she has an android phone and should have put something up or messaged me. But I won't.

Thank you all and I think I will pinch a little of that good enegery for myself. This stress is not good.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Severn
Date: 14 Mar 12 - 11:20 AM

As always, bestwishes for all recovery. Muscat Mojo was and continues to be a great help to me, and I return it when I can

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,leeneia
Date: 14 Mar 12 - 11:25 AM

Call the hospital, ask for her nursing station, and tell them that you are her mother, you don't want to disturb her, you are thinking of her, and would she please call you when she's able. They will forward the message.

Or perhaps Patient Services will have some other method, but I'm sure hospitals handle things like this regularly.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 14 Mar 12 - 01:39 PM

Poor Hil! I hope she has decent medical coverage now to deal with any costs incurred? I seem to recall when this first reared up that she was likely to lose her job due to time off sick, and thus the medical coverage with it? Memory may be inaccurate though. Is she in a different job with more tolerant boss now (I'm presuming this was an emergency admittance rather than scheduled treatment?) Anyway, good luck to her, I hope she gets whatever she needs for wellville without too many complications.

Is it possible in US for a Mum to obtain info on a daughters condition from nurses over telephone without waiting for a potentially sleeping/medicated daughter to rouse?

Hugs to you too T x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Mar 12 - 02:41 PM

I didn't know what hospital so no use trying to call a nurses station. There are lots of hospitals in northern Virginia.

I got through on her phone this evening. She is hopped up on pain meds and IV to replenish fluids.

Turned out on Friday last week, she had results of liver enzyme test. Lower than they have been in a long time. That's great news. She has been on Weight Watchers diet for last 3 weeks, per PCP advice. Don't know if WW diet exacerbated an already brewing problem or is unrelated.

Yesterday she had severe pain in her left side and couldn't keep food or liquid down. Went to ER and given her history they admitted her. CT scan revealed enlarged spleen but pancreas looks ok (sigh of relief). They discovered she has portal hypertension which is abnormally high pressure in the hepatic portal vein. Cirrhosis is a common cause. (WORRY) But it could be fibropolycystic disease. She already has polycystic ovarian syndrome. (Don't know if this makes me feel any better.)

She is waiting to be seen by a new gastroenterologist. She requested a new one because the one she had would not talk to her except through his assistant who couldn't or wouldn't answer Hil's questions. Apparently her care has not been properly coordinated as her PCP has had her on viibryd for depression and buspar for anxiety both of which she says carry warnings about liver problems. They have not given her these meds while she has been in hospital and I am worried about the warning that you are not supposed to just stop taking them. Hopefully the pain meds will keep her calm.

Re health insurance she has just had promotion at work and there are other indicators she is well liked at work especially by her manager so I feel better about that. She says that she is now covered under the Family and Medical Leave Act which will protect her job and health insurance for 12 months. Though it is unpaid leave so I don't know how she would pay rent and bills, etc.

Bit more worrying because the fiance lost his job shortly after they moved in together. Luckily her dad bought her some income cover insurance for when she is hospital. She gets $400.00 a day for everyday in hospital. That will help. And they each have a car so one could be sold if needed.

Anyway I have had news and hopefully will sleep tonight.

Thank you all for listening to me and mostly for the love.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 14 Mar 12 - 02:51 PM

It sounds like a mixture of good news and more questions, Tamara...but what a wonderful thing to have some good news in the mix!

I hope you can rest easy tonight. Tomorrow is its own worry generator; it needs no help from us! Happy music, a good meal, a foot massage, and then a deep sleep for refreshment.

Tranquility in Virginia ...

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Mar 12 - 02:56 PM

oh Maeve... I love red bud. Loved driving along the lanes in Virginia seeing red bud and dogwood in blossom.

Going to make me some buttered eggs with fresh spinach and vittoria tomatoes for dinner as I have been inspired by the poached egg nitty gritty thread.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 14 Mar 12 - 03:28 PM

Sounds good, Tamara. That was my last night's supper!

Get some rest.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Mar 12 - 03:25 AM

Still in hospital when I went to bed last night. This morning her last FB post indicated they had to move her out of her room to make room for a male patient. She was not happy about being moved due to the physical pain involved in doing it.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: jacqui.c
Date: 15 Mar 12 - 09:37 AM

Healing thoughts coming from Maine for Hilary.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Mar 12 - 04:09 PM

Still in hospital on clear diet and weirdly gaining weight. 4 pounds in 2 days. Though docs don't seem to think this is an issue.

Seen by new GI doc several times. He thinks it is her liver, even though enzymes are low and the pain is not on that side.

Another doc thinks it is her spleen as it is enlarged and the pain is there.   DUH!!!

She has been craving potassium and they discovered she has a deficiency. The potassium injection in the IV burns. She says she'd rather eat 100 bananas.

They are doing endoscopy tomorrow.

On the finance front, it appears she has some other coverage she invested in while she was well and earning. Pays for days in hospital, 6 weeks short term disability, and even one which pays her for certain tests like the CT scan they did. Smart girl.

Even better her dad and her soon to be father in law both insurance people so will help her complete the claims and provide proper documents.

She did not remember that we talked on the phone yesterday (pain killers is dilantin or something) so I got a lot of repeat info.

While talking to me on phone tonight, she clocked that perhaps she should call work in advance to let them know she is still in hospital tomorrow and may not be able in position tomorrow to call them after endoscopy.

That is all for now. I am shattered. Going to forage for food as I've not had dinner and lunch was a salad and breakfast didn't happen.


Love you guys.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Mar 12 - 04:31 PM

oh god! Now they are planning bone marrow and lymphoma test.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,olddude
Date: 15 Mar 12 - 04:59 PM

got my rosary, never fails me hon .. anytime anywhere I can help you please let me know ... Love you .. in my thoughts heart and prayers
Dan

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: saulgoldie
Date: 15 Mar 12 - 05:11 PM

Thoughts, prayers, and Mojo--

Saul

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 15 Mar 12 - 05:11 PM

More best thoughts from here in Dunfermline. I really wish I could say somerhing clever but you know the people here are with you.
ATB from Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 15 Mar 12 - 05:48 PM

Hope it is better than it sounds, shame you cannot bewith her. Prayers and hugs to you all.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Mar 12 - 07:06 PM

You have a hard job, Tamara. Hold on. Tomorrow will come soon enough.
I wish I could send you the real things instead of images; the real songs instead of clips. For now, these will have to do.

Maeve

Pretty

Rest

http://www.timberheadmusic.com/audio/TurningTowardtheMorning.mp3

Hope

http://www.timberheadmusic.com/audio/IsleAuHautLullaby_clip.mp3

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 15 Mar 12 - 08:10 PM

Don't forget to breathe, VT.

It would be so very, very hard for you even if you lived next door to Hilary. I can only imagine how difficult it is to contain your worry from such a long distance.

Surrounding Hilary as well as you with imagery of healing light.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 15 Mar 12 - 11:42 PM

Prayers continuing from me, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 16 Mar 12 - 05:29 AM

Try to take each day as it comes, and for now keep hold of the fact that a test for lymphoma may rule lymphoma out.
Gimme a ring later if you would like a chat? x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 16 Mar 12 - 06:22 AM

I panicked the other day because I received what appeared to be some bad news.
While panicking I recalled this proverb I once heard on a Paul McKenna tape years ago: http://www.quotes-daily.com/2009/10/maybe-so-maybe-not-ancient-taoist.html and it reminded me to keep my mind located in the now and not to second guess the future. As it happened the news wasn't so bad.

This isn't meant to be patronising, sometimes very small things like the wisdom of an ancient proverb, can help to provide anchorage in the storm.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST
Date: 16 Mar 12 - 07:05 AM

Something of a leftfeild suggestion this. Is Hil still Wiccan Tam? I wonder if it might be helpful to both her and to you, if you work her some Mojo in the form of a simple healing/protection ceremony, particularly involving song - as it taps into your strengths? Whether you consciously 'believe' or not, it may be good for Hil to know she's being supported in such fashion?

Looking for Wiccan healing songs, some chants by Lisa Theil which could easily be adapted came up:

http://www.youtube.com/watch?v=9SZ6vFs9w20
http://www.youtube.com/watch?v=eGGZq0UInTg

CS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 16 Mar 12 - 05:10 PM

Tests rule out problems and enable the doctors to focus on a diagnosis. Tests are good things.

Try to breathe Miss Tam. Seeing one's own child suffer is a parent's worst nightmare. Hang in there.
Mary

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 16 Mar 12 - 05:52 PM

When my sister needed a kidney transplant and one of my brothers was the donor, my other brother and I were worried and concerned -- but I could see that our feelings were a mere fraction of those of my parents; I have never (before or since) seen them looking/feeling so vulnerable -- which told me so much... A mother's/father's love is unfathomable (until you are a parent yourself).
Keeping you and your family in my thoughts, and hoping for good news.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 17 Mar 12 - 06:17 AM

Good morning, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Mar 12 - 10:32 AM

Hello all - thank you for the encouragement, thoughts and links.

She is still in hospital. Docs have not said why they are still holding her.

First indication of endoscopy is gastritis, but she cannot eat (offering her soft solids now) unless they give her strong pain killers. They took stomach biopsy during endoscopy, so pain even greater now. One nurse has not been very kind regards her pain. "Only gastritis? You should not be hurting that much then!" Might have been nurse's tone or Hil's interpretation. She was very "testy" last night.

Last 2 hours of facebook posts she has posted twice.

2 hours ago = :'(

1 hour ago = *sob*

Have heard no more about the desire to do bone marrow and lymphoma tests. I want to be there.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 17 Mar 12 - 10:37 AM

Of course you want to be there, Tam. I wish you could.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 17 Mar 12 - 01:32 PM

Me too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Mar 12 - 01:59 PM

Well her Dad and his partner are there getting the info from the specialists today. The hematologist believes her liver is acting out and causing the other problems.

I talked on phone with her and her father. Hil is very emotionally and in a lot of pain. they have not been giving her her thyroid replacement but continuing the antidepressant and anti anxiety med (which I believe may be causing the liver to act out but you can't just suddenly withdraw these kinds of meds).

Gastro doc arrived so I had to hang up. But her dad thinks they will keep her in until Monday or Tuesday for bone marrow lymphoma test.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 17 Mar 12 - 02:39 PM

Only gastritis? I have seen grown men doubled over and reduced to tears by gastritis.
Silly bitch!
Rant over.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Mar 12 - 02:54 PM

Turns out there are now 2 nurses who are shaming her for asking for the pain meds that doc prescribed for very 3 hours. They wait until she is begging them for it then give her a hard time saying she doesn't really need them. I told her to get Galen or her Dad to talk to their supervisor.
But I also reminded her that when she had liver biopsy when she was age 14 that nurses advised trying to go longer without pain meds. And they did same to me in UK when I was in similar lower abdominal pain. Not shaming but telling me the longer I could go without the better in the long run.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 18 Mar 12 - 11:58 AM

I am absolutely gobsmacked to hear of such callous, unsympathetic and downright nasty "nurses". I'd like to slap them; can't imagine how you must feel...

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 18 Mar 12 - 12:02 PM

Oh, dear. Sometimes I wish all medical people would experience unalleviated severe pain. So many have no concept!

Praying for correct diagnosis, best treatment, and physical and emotional healing.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Crowhugger
Date: 18 Mar 12 - 02:51 PM

Best thoughts to you and Hilary often.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 18 Mar 12 - 03:21 PM

I'd like to say something but I am just too upset at those nurses and it wouldn't help. Ts&Ps.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Mar 12 - 07:21 PM

She had to wait 5 hours and ask 3 times in the last hour for pain meds that are supposed to be given every 3 hours. However, a nurse friend has told her there may be a very good reason why the nurses are trying to get her to hold on longer. The pain meds could exacerbate the liver problem which is likely the underlying cause of her pain.

Poor kid. Wish I was there.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Jack Campin
Date: 18 Mar 12 - 07:46 PM

If the doctors have said "every three hours" the nurses have NO business trying to overrule them.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Richard Bridge
Date: 18 Mar 12 - 08:16 PM

What Jack said

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 18 Mar 12 - 09:19 PM

Even IF they have good reason to "encourage" her to use as little painkiller as possible, there is NO reason to be unkind about it. AaMoF, it would prolly make it easier for her to hang on longer in between doses if they were kind, sympathetic and encouraging.

Being nasty is not going to help her morale, which is likely to make her feel the pain even more than she would otherwise. It's pretty clear these days that state of mind can have a LOT to do with how much/little one experiences pain. There is absolutely NO excuse for anyone (let alone a nurse, for heaven's sake!) to belittle and try to shame someone who is in pain! I feel outrage when I hear of such treatment of anyone in pain.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bonnie Shaljean
Date: 18 Mar 12 - 09:42 PM

Thinking of her, thinking of you, sending every healing thought I have to you and your loved ones. Keep us posted - we're here for you. Bonnie xxx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 18 Mar 12 - 10:48 PM

I mentioned this thread to my hubbie, 'cos I was so appalled... He agrees it is absolutely disgraceful.

Being unusually well-informed on such things, he had some suggestions I thought worth mentioning here, such as:

What about other types of pain relief?

• There are drugs that are not so hard on the liver; is there some reason she can't be given one of those?

• There are also non-drug types of pain relief, like TENS, where causing sensation in/to another part of the body, like the spine, can help diminish the pain by distracting the brain with an alternative sensation (this has worked for me in the past when I had unusually bad menstrual cramps; my husband would stroke my spine and it helped a great deal).

• What about an epidural, or gas (nitrous oxide) and air?

He adds, "Don't US hospitals have a specialist pain nurse (or team), or is that something we only have here in the UK with our "backwards" socialised medicine?"

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bat Goddess
Date: 18 Mar 12 - 10:58 PM

Lots of white light, healing thoughts and prayers from this quarter, Tam. Time for one, time for all. Is the universe just slightly out of kilter these days?

Hugs,
Linn

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 19 Mar 12 - 03:35 PM

What I wrote in my last comment still goes!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 19 Mar 12 - 03:59 PM

thanks all... last FB post was 6 hours ago... "Nurse just came in and said bone marrow biopsy today." Nothing since then and mamma's worrying herself silly.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 19 Mar 12 - 04:25 PM

"Don't US hospitals have a specialist pain nurse (or team), or is that something we only have here in the UK with our "backwards" socialised medicine?"

Of course there are pain specialists in the US. Whether there is such a team at this particular hospital, we don't know, do we? We're all frustrated, but none so much as Tamara.

Tam, both a pain specialist and a patient advocate would be good resources if available. There may also be a staff member in the the administrative/medical position called "Hospitalist". If so, one of you could get hold of him or her and ask for help. If Galen and Hilary's dad could try for contact with her doctor (re: following pain medication orders and nursing staff behavior) that would be good. Engaging the nurses in seeing Hilary as a person can help them see past their own workloads and frustration...and any attitude problems may diminish.

Beyond that, keeping a log of all contact with staff and what and when meds are administered will at the very least give a set of facts to discuss with the doctor. Hilary is scared and hurting; what might Galen or her friends do for and with her to help her relax and feel calm? Music? Conversation? Hand massage?

It is so hard to determine the facts when you can't be there; I'm sorry this is so hard for you all.

(((Tamara & all)))

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 20 Mar 12 - 11:10 AM

It doesn't help anyone especially not Miss Tam to second guess the hospital.
Sending good thoughts to Hil and family.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 20 Mar 12 - 11:20 AM

Hope you soon recieve some good news, still thinking of all your family

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 20 Mar 12 - 11:22 AM

Agreed, Sins.

Good morning, Tam. Here's to a brighter day of news.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 20 Mar 12 - 05:53 PM

Nurses were trying to wean her off meds so she could be released. So they claim. No result on bone marrow. She still can't eat even soft solid food without pain.

Other news - AFLAC rep just told her on the phone that she had been rejected on the Hospital Confinement Indemnity because she has pre-existing condition, yet they have been taking the deductions out of her pay check. Hil is hysterical. I don't think she had the policy long enough. She has a receipt that states coverage starts 1 March 2012. Never received a rejection letter. I dunno. I never could get my head around insurance speak. So I advised her to not talk to the AFLAC rep until talking to her father or soon to be father in law, both of whom worked in insurance. And better to get one of them to do the talking for her to the AFLAC rep.

Good thing I've been saving for a kitchen replacement. Ours is the original 1970's one and though falling apart it will serve until we need to sell the flat. I can now put money toward helping her through this mess.   

BTW ... my BP is up. I can hear my heart pounding in my ears. Not pleasant.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 20 Mar 12 - 06:04 PM

Last I knew, federal law says no insurance company can deny coverage due to a pre-existing condition, any more. Good advice to have someone else got to bat for her. When a person feels so unwell, battered and down, it's difficult to stay focussed and realise what is being said, done, etc.

I haven't posted before, but I have been checking your updates and keeping you both in my thanks givings and thoughts. I am *seeing* you surrounding by a calm, peaceful light with feelings of assurance that all will work out for the highest good of all concerned.

kat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 20 Mar 12 - 06:40 PM

I don't know if that applies to indemnity. Her normal medical insurance will be ok and the "reportedly" disability insurance also with AFLAC. She tried to cancel the disability because they didn't pay on it last year when she was ill, because her illness was not life hindering? Though it left her unable to work for several weeks. But the agent convinced her that should not have happened yada yada and then sold her the indemnity and some coverage on specific scans and tests to top up the disability.

She is calmer now. They gave her drugs to calm her as well as pain meds. So very sleepy. I told her that I have money to help her if it comes to it. She was too drugged to argue with me (much). She is fiercely independent.

I dunno. I am tired. Going to bed and hopefully will sleep better than I have been lately. Try to take some of your good wishes into my my dreams.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 20 Mar 12 - 08:26 PM

Sleep good. Fingers crossed for better news tomorrow...

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 20 Mar 12 - 10:06 PM

Prayers for you and your daughter from me.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: LilyFestre
Date: 20 Mar 12 - 10:17 PM

There is never any shame in asking for pain meds when needed. NEVER. The doctors I go to are of the mind that you need to stay ahead of the pain, that's when you heal best.

Prayers and Good thoughts for you all!

Michelle

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: LilyFestre
Date: 20 Mar 12 - 10:19 PM

Insurance companies can and do reject people with pre-existing conditions. It is my understanding that in the year 2013, this will no longer be legal.

Michelle

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 20 Mar 12 - 10:35 PM

There is a difference between health insurance and AFLAC's products which are supplemental. When signing up for such products you are asked about previous illnesses. Cancer within the past five years for instance is a no go as is morbid obesity. I sold this type of insurance a while back. Great if you are healthy and don't need it.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 21 Mar 12 - 03:39 AM

The agent who sold her the indemnity and top up for medical tests told her there should be no problem with the pre-existing conditions. The company has been taking money out of her pay check every 2 weeks for these extra policies.

I have been reading nightmare stories of people who cannot cancel their policies. Several who after cancelling found a year later money was being deducted from their paychecks and when AFLAC was contacted they received a letter that it was deemed a risk to cancel the policy so it was reinstated without the policy holder's knowledge. But then there are just as many positive stories of how much AFLAC helped.

Had a stupid tearful breakdown this morning. Quite proud of myself though because it only lasted about 10 minutes. Frustration of not being able to do simple tasks like put on bra, blouse, shoes and socks without pain and often help from TSO. I fell apart, sobbing about how can I help her if I can't take care of myself.

ah well... must go to work now and be overwhelmed by the work. At least it will take my mind of home and Hilary for a bit.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 21 Mar 12 - 06:57 PM

Prayers. And love.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 22 Mar 12 - 10:51 AM

How's she doing? Any further news re: bone marrow tests?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 22 Mar 12 - 11:56 AM

Another lovely spring day here, Tamara. How are you?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 22 Mar 12 - 01:51 PM

Miss Tam,
You need to breathe.
I hope I don't sound callous:
Hil is in the hospital and seriously ill. That has to be your only concern right now. Screw the insurance,screw her job, screw all other distractions. Stay focused on what you have control over.
I am speaking from experience and compassion.
Be her voice of reason. If the insurance is F'd up, let her know that you will help her with that later. Right now she can't afford to spend strength, attitude and emotions on anything but recovery. You can't either.

That said, if it helps you to dump the crap here, DUMP AWAY.
Maybe you can get us the cell phone number of that agent. We could have a lot of fun with that.
SINS, keeping you in my thoughts and prayers.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 22 Mar 12 - 02:47 PM

Oh Mary, you are the best!
Well you all are the best. Love the idea of mudcat friends hounding AFLAC agent to distraction.

She is still in hospital. Bone marrow just back. HIV and lymphoma negative. Can I just say "WHEW!"

This morning's FB interchange

Hilary: Maybe it takes a special skill to be able to poop black jelly beans.
Me: Are they giving you iron for the anemia? That might explain it.
Hilary: What are you talkin bout woman?
Me: I thought you wuz poopin black jelly beans.
Hilary: Ummm no and ew why would I post what I poop ?!?!?!?


She is a bit annoyed that they can't figure out what's wrong with her. They started a new med to calm the gastritis. She managed to eat a peanut butter and jelly sandwich yesterday. She is posting silly comments on FB. So things are better now than they were 2 days ago.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 22 Mar 12 - 02:52 PM

She is still in hospital. Bone marrow just back. HIV and lymphoma negative. Can I just say "WHEW!"

So very, very pleased!!

I'm listening to some ambient / psychill (whatever!) at the mo'. Try some:

Jaia

Bluetech

Love x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 22 Mar 12 - 02:56 PM

Wonderful! Imagine Mad Applause Here. Check your PMs, please, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 22 Mar 12 - 04:44 PM

I'm so pleased to hear of any improvement, VT
Please accept a platonic hug from a 64 year old paper boy.
Good thoughts from Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 22 Mar 12 - 09:49 PM

Deep breaths. I hope today was the first of many steps forward.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 23 Mar 12 - 02:02 AM

So good to have some good news! Hope this is just the start of things getting better and better...

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 23 Mar 12 - 03:13 PM

Tests ruled them out WHOO WHOO!!!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 23 Mar 12 - 03:27 PM

Latest post on Hils FB

"Hot damn I was able to eat a whole meal with no pain!!!!! :)"

That is since before last Tuesday. Still no news on when she will be released.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 23 Mar 12 - 09:07 PM

I hope she gets a few more good meals in her before the hospital boots her out. I'm sure they won't keep her a minute longer than necessary. I understand that you are both eager for her to be released, though.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 24 Mar 12 - 02:07 PM

As of this morning, they said they were not going to let her go home due to low blood platelets. But as of 4 hours ago....

"...I see blue sky's through the tears in my eyes,and I realize....IM GOING HOME!" (Rocky Horror) I love my kid!

They put her on prednisone (I don't know how long ago) but she said it seems to be working.

Thank you one and all for all your good thoughts, prayers and energy. You guys are amazing.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 24 Mar 12 - 02:28 PM

Hurrah! Going Home

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 24 Mar 12 - 02:58 PM

I love good news.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 24 Mar 12 - 04:27 PM

So do I. Hurray and good wishes, Tamara.
CHarlie fB

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 24 Mar 12 - 05:15 PM

Good news, VT.

Now, while she takes care of herself, you take care of yourself!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 24 Mar 12 - 08:33 PM

And there was MUCH rejoicing!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 24 Mar 12 - 10:30 PM

Indeed there is. BTW, on Nigel Patterson's thread I referred to his daughter Jane as Hilary! I've been praying for both. I may be confused, but I'm sure God isn't!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 26 Mar 12 - 11:46 AM

Still here, Tamara. I hope the day has gone well.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 26 Mar 12 - 02:48 PM

She only made it through half a day of work. Said it felt like her spleen was going to pop. I suggested that maybe she needs a few days of working part time until the meds have had more time to do the job.   Her boss told her not to worry about her job. She was really worried about Hil.

Galen really went to bat for her too with the nurses who kept refusing to give her the pain meds. Turns out they weren't weaning her off by extending the time between doctor prescribed doses. They were simply refusing to give her the meds and telling her to stop complaining.

However the nurse who was the most adamant about not giving her the pain killers, was the one who shouted at gastro doc for not ordering bone marrow test. Gastro was going to send her home after endoscopy found gastritis. Hematologist stepped in, put her in quarantine because her platelets were so low. She would not have been able to fight infection and was at risk of bleeding to death if injured.

By Saturday afternoon and 3 days on prednisone and another anti inflammatory her platelets started rising. So they sent her home. But she has to go back for tests and if the platelets start dropping then they will probably advise a splenectomy.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Dorothy Parshall
Date: 26 Mar 12 - 03:33 PM

Oh Virginia!.....

A period of peaceful silence cause I can think of nothing else to offer.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 26 Mar 12 - 04:45 PM

"was the one who shouted at gastro doc for not ordering bone marrow test"

Well, maybe she does know what she's doing??? In any case, it seems poor conduct, but I am not a doc or nurse.

BTW, IMO, being a nurse is the hardest job there is.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 26 Mar 12 - 08:17 PM

My goodness. I am amazed that she made it through half a day of work after such a recent release from the hospital! And I am glad she was able to leave when she did. I hope she continues to gain strength.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 26 Mar 12 - 09:50 PM

What ChanteyLass said.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bonnie Shaljean
Date: 27 Mar 12 - 07:51 AM

From me too. Thinking of you both -

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 27 Mar 12 - 02:01 PM

Oh damn!

Post on her facebook 6 hours ago

"ouch!!!
somebody kill me
spleen... tummy ... everything :("

Her last post was 4 hours ago - waiting for the PCP office to open so she could get an appointment and ask to be referred back to hematologist and endocrinologist. After appointment to stop at CVS and fill another prescription for oxicodone, which she told me yesterday did't help much when she was in hospital.

Nothing since then. Right now is it scary being a mamma on the wrong side of an ocean.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 27 Mar 12 - 02:53 PM

Back home again with pain meds and appointment booked with hematologist this Friday.

She has completed Her disability claim form and is now very tired.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 27 Mar 12 - 03:09 PM

Awww... crap. I hope things work out.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bonnie Shaljean
Date: 27 Mar 12 - 03:20 PM

Back home again with pain meds and appointment booked

Here's hoping both she and her mama can now get a bit of much-needed rest for awhile. Will stay tuned -

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 27 Mar 12 - 05:36 PM

She is a bit frantic now. The oxycodone is relieving the pain some, but she cannot sleep and she so wants too. Says her brain is busy and yet not. Whatever that means. Says she feels icky sickly and wants to sleep it away but can't.

I told I think maybe her body is coming down off the mix of really strong pain relief she had in hospital. I find it difficult to fall asleep coming down from cocodamol.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 28 Mar 12 - 02:38 PM

Hilary is still lots of pain... can't work, can't sleep, sit, stand, lie down, eat much (few almonds and dried cherries), drink anything but Powerade (somebody light me a $#*+ reduction candle please).

I shouted in text. STOP consuming chemicals. No more Powerade. Nuts are hard on the tummy and dried cherries will be treated with preservative. ARRGGHHH!

Then I said why don't you try razor blades and liquid plumber. She said I've been begging for someone to kill me, but there are no takers.   I am that pissed off at her. We had words. It got a little heated but we are better now. She is going to lay off the chemical laden food.

GEESH!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: mg
Date: 28 Mar 12 - 10:10 PM

There must be a nutritionist that can offer some advice although I am not convinced they are always right. Coconut water and oil has some restorative effects..google to make sure..some people can live a long time on coconut water and milk...very similar to blood plasma. I would think maybe some white rice or chicken soup or something but I can not advise obviously. Yogurt? mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 29 Mar 12 - 04:22 PM

mg I could kiss you.

She loves coconut water. Didn't think about using that to deliver nutrients and hydration. She is going to use it to flavour bottled water so she can get it down. She can't drink tap water at all even when she is well. Guess it tastes vile in Arlington VA.

No more powerade!

Whew

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 29 Mar 12 - 05:36 PM

WOOHOOT! 1 glass of coconut water and 1 bottled water later and she feels much better.

She is (and so am I) very grateful.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: mg
Date: 29 Mar 12 - 07:38 PM

Please do kiss me next time we meet...Glad she is finding something helpful...mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 29 Mar 12 - 09:26 PM

What a great idea, and it is wonderful to know that it is helping.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 30 Mar 12 - 05:11 PM

Well the coconut water seems to only be helping a bit. She has a perishing thirst and a frightening fatigue. No energy to do anything. The doctors scoffed at her when she asked if possibly it was diabetes.

She is now on 8 different pills in the morning. Appointment with hematologist today he referred her back to PCP to ask for a referral to rheumatologist. He thinks she has lupus. He also said she may need to have spleen removed. She is very scared and so am I.

She is afraid of losing her job. Company cannot keep letting her miss work. It is medical collections company. (karma?) Only thing she could get after uni. She hates it. It causes her a lot of stress. But it pays the bills and provides her with the much needed medical insurance. But stress is the last thing she needs right now with gastritis.

I looked up on womenshealth.gov that women diagnosed with lupus may be referred to a number of different medical departments, cardiology, hematology, nephrology, physio and occupational therapy and social worker. I told her to try to get hooked up with social services as soon as possible. That if they can intervene with your employer it would help and if that doesn't work to keep her job at least the social worker will know she is trying to stay in work and may have other options and ideas. Less stressful work or help getting some sort of disability.

She said "it feels like society just wants me to die." What can I say to that?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 30 Mar 12 - 05:46 PM

She said "it feels like society just wants me to die." What can I say to that? (VTam)

Society doesn't really care. Lots of people do care though, so I hope Hilary keeps on figuring out where she needs to go and who to talks with and what has to happen to get the information she needs. It can get better, and she has so much intelligence, joy, determination and love with which she can bless the world of people who do care.

What if it is lupus? There are many people leading happy lives in spite of lupus, so I also hope she won't let enemies like I Can't and It's So Hard and They Won't Help and They Don't Care have control of her one beautiful valuable life.

She is so valued. Tell her it's worth the struggle.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Maryrrf
Date: 30 Mar 12 - 05:48 PM

Well said, Maeve. Wishing the best for Hilary, VT.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 30 Mar 12 - 11:31 PM

Of course my prayers continue.

"The doctors scoffed at her when she asked if possibly it was diabetes." The scoffing upsets me. She needs answers, not scoffing. While she was in the hospital, was one of Hilary's blood tests an A1c? What were the results? If that wasn't done, she should have one. Diabetics should have one done every 3-6 months.

I wish I could hug her--and you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 31 Mar 12 - 12:44 AM

Very well put, maeve. I agree.

If she has access to the internet, suggest she get her mind to settle by taking it off of what is worrying by watching funny old movies or anything which will help her stop thinking and stressing so much.

Same for you, plus sometimes the best thing a mom can do, esp. if she lives faraway, is to surround their kid with Love and Light, positive energy and even say or think, "I fully and freely release you to your highest good." Not easy to do, but sometimes our concern can add to the stress of the situation including ourselves.

Much Light and Love,

kat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Hollowfox
Date: 31 Mar 12 - 10:45 AM

The 4321-reduction candle series starts when I get home tonight. Momly good thoughts giong out now.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 31 Mar 12 - 11:27 AM

Ditto to those who have commented on maeve's post.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bonnie Shaljean
Date: 31 Mar 12 - 11:42 AM

<< VT >>

:-(


xxx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 03 Apr 12 - 12:54 PM

Hilary is still very much in pain. Not been in work for 3 weeks now. Her job requires her to clock out each time she needs to leave desk. Prednisone has given her perishing thirst and the frequent trips to relieve bladder from drinking so much. This makes going in to work a bit pointless. Besides she is hurting. Doc is understanding an has signed her off, but I don;t think the employer will be.

She was online when I checked my FB this morning. 8am my time 3am her time.

I sent some money via paypal to help her cover her copays and meds.

My RA and fybromyalgia is flaring like crazy. Guess it is the stress (not all attributable to Hil - as work is manic. I am covering for 5 other people the last few weeks). I had to go home early today. Tramadol, here I come.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 03 Apr 12 - 09:38 PM

Holding you and Hilary in my thoughts and meditations.

Janie

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 03 Apr 12 - 10:54 PM

What Janie said.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST
Date: 04 Apr 12 - 06:06 AM

Hi Tam, havent been on Mudcat for ages, ( Billy has been in hospital with melanoma) so have only just caught up and read this post, sending you lots of loving hugs and healing thoughts for your daughter, dont forget I am only just down the A12 if you need some moral support . Just ring me I think you have my number or you can find me on FB.
lots of love Wendy xxxx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Billybob
Date: 04 Apr 12 - 06:10 AM

That was me billybob lost my cookie!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 04 Apr 12 - 03:25 PM

"I sent some money via paypal to help her cover her copays and meds."

I know you want to be there to hold her hand, but to be honest, it's doing something useful that *really* helps in a crisis.

It's those people who quietly step in and simply do what needs to be done who truly make the difference. However many miles away they may be. Remember that x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: wysiwyg
Date: 04 Apr 12 - 07:51 PM

((Tam)))

~S~

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 05 Apr 12 - 01:55 PM

She is back in the ER. Pain, nausea and vomiting out of control.

Am I off the mark in thinking maybe she has some kind of food poisoning? The night she first came down violently ill, she went to a bar/restaurant and had one vodka cocktail. But the place is a raw bar. Might she had gotten some bug from waitress handling food and her glass?
Next morning Galen took her to ER and they admitted her.

She claims she was feeling a bit icky before they went to the bar. But I am not so sure. Would the hospital normally test for food poisoning and how do they treat it?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 05 Apr 12 - 02:01 PM

She is at a different ER this time.

They are saying now she has high blood sugar most likely from prednisone or from lupus.

I asked last time if they did diabetes test. Remember she asked at the other hospital and they scoffed at her.

I can't stand this. She needs me there being a bull dog for her care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 05 Apr 12 - 02:22 PM

Awwww... I dunno what to say.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 05 Apr 12 - 06:21 PM

Well, you can ask Hil if she needs you there. If she says yes, go. If she says no - she feels she is handling things as well as can be expected.
She must be so frustrated by their inability to pin down a diagnosis and treatment.
Still praying.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 05 Apr 12 - 06:52 PM

What are the symtpoms for hepatitis? mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 05 Apr 12 - 10:18 PM

I am sorry that your daughter is back in the hospital. I hope she is soon well enough to be released.

Re: diabetes--I mentioned this before--has she had an Aic (A one c) blood test? It is used to diagnose diabetes.

It sounds like she has so many medical problems. It would be wonderful if she could be medically stable.

My heart and prayers continue to go out to her and to you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 05 Apr 12 - 11:30 PM

It's so hard to be so far away and feel no control over a situation which involves our children, VTam. But, you can't be a bulldog for her when your own health is so compromised. I know the stress of being apart is bad, but the stress of travelling, staying in an unfamiliar setting AND trying to advocate for her would take more of a toll, from what you have told us, imo.

Hospitals do have patient advocates. I contacted one at each of the two hospitals I had been at and was helped immediately. Maybe that would be a way to help your daughter? Also, talking directly to the "Hospitalist" can be helpful, at least in my case it eventually was.

Finally, the hardest thing of all, imo, but one of the best things we can do for our children, esp. when they are far away is to "bless and release them to their highest good." At least that is what works for me when I can't do anything else.

luvyakat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 06 Apr 12 - 07:39 AM

"She needs me there being a bull dog for her care."

I'd tread very carefully around that one T. At least in the way you express express your feelings about it to Hillary. Adult children of parents who have left the family home, will often necessarily develop a strong sense of independence and self-reliance in the absence of that parent. Subsequently asserting that the adult child later "needs" them during a period of difficulty and moving back into their lives to "takeover" or "fix" their problems, can do more harm than good to the relationship and may promote much resentment, particularly if there was a sense of abandonment (obviously possible even with adult children) at the initial parting. I'm sure you know all this and that you're sensitive enough to what Hillary may feel she needs, not to confuse your own needs as a long distance Mother concerned for her child, with Hillary's needs as an independent young woman.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST
Date: 06 Apr 12 - 08:09 AM

Just re-read that and hoping that I didn't come over too cool about the difficulty your having coping with Hil's sickness at such a distance. Sometimes it's tricky to express painful things as compassionately as might be desirable..

You need to somehow find a way to relax into the conflicting emotional tensions you're experiencing. Observing them, accepting that they are 'there' while relinquishing them at the same time. Knowing that you are separate from them rather than identifying with them and allowing yourself to be pulled around by them.

Is there a Buddhist group in Chelmsford? You might benefit from attending.

http://www.youtube.com/watch?v=s7MtEbDNLSs

http://myownminister.com/2010/10/26/holding-space/


CS xxx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 06 Apr 12 - 11:07 AM

I too did not mean to sound so matter of fact. I am in a similar long distance situation with my son but totally different circumstances.
I expect that Hil does not want Mom taking over her care but still needs her as a sounding board. Or maybe Tam is the one she can count on to listen and empathize when the nurses don't seem to care.
No instant overseas trips recommended. First, you will do yourself no good. Second, it can't help her to have an ill Tam on site.
Hang in there Miss Tam. And keep listening.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 06 Apr 12 - 12:04 PM

"First, you will do yourself no good. Second, it can't help her to have an ill Tam on site."

Agree with the eminently sensible Sinsull.
Plus sick Hil stressing over sick Mum stressing over sick Hil = even sicker Hil.

If you're sure you want to go, you need to be sure not only that Hill both wants and needs you there, but that you're fit for it. Otherwise to be unkindly frank, you will become a greater hinderance to her well-being than an aid to it...



Dunno if this will be of interest, but some Buddhist meditation and healing links for Chelmsford:


http://www.chelmsfordfaiths.plus.com/Buddhism/Buddhism.htm

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 07 Apr 12 - 02:06 PM

The poor thing is now battling a sudden outbreak of boils. Whatever next? Fiery hail? Frogs?

I am guessing it is the prednisone and the other steroid they prescribed to suppress her immune system. Though they did say at ER the other day that her sugar was high so diabetes is a worry.

Only advice I can give is how to wash all the laundry and clean the house (with lysol in brown bottle) to prevent spread. Praying she has the strength and energy to do this or will enlist Galen to help her.

Gave some links for treating and told her not to stop the meds but to get to the doctor immediately for advice.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 07 Apr 12 - 02:09 PM

"The poor thing is now battling a sudden outbreak of boils. Whatever next? Fiery hail? Frogs?"

Bad Mamma! You made me laugh so much!
Poor poor Hil...

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 07 Apr 12 - 03:29 PM

Oh my. Ts&Ps are all I can offer.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 07 Apr 12 - 03:34 PM

So this is what she is taking


Prednisone 60 mg a day to suppress immune system

Azapithione also for auto immune

Protanax for the gastroenteritis

Zofran for nausea

Tramadol for pain

Oxycontin also for pain

Thyroxine at 175 mg

Buspar for anxiety

Mitforman for blood sugar - started at last ER visit.

She says her liver is killing her mostly when she moves or tries to bend. If she stays very still the meds are controlling the pain. But when she gets stressed (like on the phone with her father this afternoon) the pain is unbearable. She was asking for a little money to help with bills. He only relented when she started crying. The bastard.

I sent her more money and told her to get someone in to help with cleaning/sterilising her laundry and apartment.

She is having hallucinations (faces coming out of the floor). I think tramadol and maybe the mix of meds. And very worryingly, she says her eyes are going funny. They hurt and she can't see properly. I didn't say anything about diabetes. If she is in Lupus flare, then the diabetes may be temp thing that will fade when she goes in remission. Well I am hoping.

Wish they could get her sorted out. The is so frightening. the speed and severity of it and the long time getting her some relief.

She is just getting sicker and sicker.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 07 Apr 12 - 04:32 PM

I think you should write down everything..all symtpoms, the medications like you did, the time line..maybe start a new email where they can also email you to an anonymous box...

Then there are medical mystery groups I am sure on the internet..take everything as a suggestion only of course and further research it...

I would of course not put down her name, city etc.

Someone out there will recognize a pattern...but you will have to take it to where they are assembled for the purpose of doing this..not sure where that would be but someone must know...mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 07 Apr 12 - 05:16 PM

http://www.lifewithlupus.org/profiles/blogs/my-medical-mystery-story

Have you checked out places like this? mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 07 Apr 12 - 05:58 PM

Certainly, a historical log is a good thing... meds, results, feelings, any and all details. It may help the docs... if they look at it. Sometimes, they don't. Been there.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 07 Apr 12 - 06:27 PM

That girl is a wlaking pharmacy.

It is really unfair that someone so young who wants only to work and enjoy life should have such crappy health issues. It's wrong.

So sorry, Tam.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 07 Apr 12 - 07:06 PM

I knowyou have answered this before, but ifshe should lose her job would she be eligible for English health care if she had to move in with you for a while? mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 07 Apr 12 - 10:04 PM

I am so sorry to hear that your daughter is having more problems. At least I gather that she was tested for diabetes before being given Metformin. That is the only drug on the list that I have used. I understand that it is the kind of drug that needs dosage adjustments to determine the best amount for each person. I also know form experience that it can take several months to get the best dose.

I will continue my prayers.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 08 Apr 12 - 04:34 AM

MG! Thank you for that. JacquiC told me some time ago about her experience with Lyme Disease.

I asked my GP and my RA nurse about this some time ago, because in mid 1990s I suffered an attack from a cat, after which I was ill for weeks, with fever, sever joint and lower back pain. I couldn't straighten my back for at least 3 months.

Because I had a house cleaning business (and basically providing 3/4s of family income) and was going to college at same time, I did not go to doc. Simply couldn't afford to.

I have given Hil the link and told her to ask if they have done a Lyme Disease test. If they haven't telling her to request one.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Maryrrf
Date: 08 Apr 12 - 08:50 AM

At this point it probably is difficult to distinguish what symptoms are due to illness, and what symptoms are side effects of all those medications. I hope they get it sorted soon - and there's a good chance they will. Mudcat Mojo has worked many miracles.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 09 Apr 12 - 12:53 PM

It is looking more and more like lupus. She is very worried by the hallucinations and the sudden very blurred vision. She can't cope with looking at PC screen very long, light hurts.

She now has skin and nail problems cropping up. Hilary has always had beautiful skin and nails, very meticulously cared for.   She says she now looks like a lizard.

She has help from Galen's dad filling out Social Security Disability forms. She has been working since she was 15, even during university years. She will be 27 on 21st June.

Galen's parent's are remodeling their basement into a small apartment for them move into if it comes to it. The worry is, Hilary cannot manage steps. She cannot drive with her vision problem and cannot bend at the waist without excruciating pain.

This post is a bit all over the place. Down to being a one armed bandit (RA in left wrist very bad) and the pain killer I am taking to make it stop throbbing (making me fuzzy headed).

Thank you for all your good wishes. Please keep them coming.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 09 Apr 12 - 03:37 PM

Is she on a gluten-free diet? That can aggravate at least autoimmune problems if you are sensitive...mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 09 Apr 12 - 04:04 PM

started new nausea meds which is really working
received the glucose test kit
she knows about the gluten free and low sugar and is following it
rash is yeast caused by prednisone
she has now lost 20 pounds

she is growing up.... the friend that bailed on her last year when she was sick, just did so again as soon as she found out Hil was in hospital. Blocked her phone and facebook. Hil has decided not worth the stress. She is determined not to stress.


Atta girl!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 10 Apr 12 - 06:06 AM

Good for Hilary; that's not any kind of a friend.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 10 Apr 12 - 11:51 AM

That's a friend?????

That's someone she does not need in her life.

Lupus is serious but can be controlled. Hope thay finally have the right diagnosis.
SINS

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 12 Apr 12 - 04:38 PM

Guys I really need you to pour it on.

Hil is back in hospital, sugar 722, violent vomiting and excruciating leg pain.

She is having a diabetic reaction to steroids and they think blood clots.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 12 Apr 12 - 05:06 PM

We're here, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 12 Apr 12 - 05:46 PM

from Galen's facebook

The doctor in the ER, after hearing about all that has been happening with Hilary, was absolutely livid that no one has gotten to the bottom of this yet. The official word this time is that Hilary went in to a steroid induced diabetic response, because of the Prednisone she is on. However, they have decided to keep her on that medicine because it is surely helping with her splenomeglia. They have done three more ultrasounds, one specifically of her liver: results pending. They believe she may have some blood clots in her legs, which they will attend to. Although they are definitely going to screen for it, the doctor does not believe Hilary has lupus. And although there may be no apparent signs of Addison's Disease, both Hilary and I have requested she be screened for it, as well. As of when I left the hospital for today, Hilary was not suffering from any nausea, was well hydrated, had received insulin injections, and had been able to eat a good portion of a healthy lunch.

He added requests for prayers and later a bit about the nursing staff at this hospital making disparaging remarks about the quality of care at the first hospital she was in. Don't know how true or helpful that was, but there it is. She is there and I am not with her and I hate it.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 12 Apr 12 - 05:50 PM

You must be feeling such frustration, Tamara!

Galen's post strongly suggests he is paying close attention, dealing responsibly with staff, and that he saw a vast improvement in Hilary's immediate condition before he left the hospital. Good for him!

I'll check in here again before bedtime.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 12 Apr 12 - 06:22 PM

I agree with Maeve. No pain and able to eat is a huge step in the right direction.
Hold on to that
Mary

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 12 Apr 12 - 06:28 PM

thank you both. It is nearly 11.30pm here. So going to bed. There won;t be anymore news tonight. Wonder if I will sleep much?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 12 Apr 12 - 06:53 PM

Sleep well, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 12 Apr 12 - 08:42 PM

I am also still here and praying.

I was looking for The Short Sisters singing this song, but couldn't find them doing it. Here are other performers. I hope it will help you sleep. http://www.youtube.com/watch?v=ZnbU6PAXvoY&feature=related

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 13 Apr 12 - 12:09 AM

Holding her and you in a circle of Light. She is safe for the night and will be better, even more so, tomorrow, I'll bet, so maybe you can get some sleep knowing that? It's good someone actually understood and is doing something about it.

Sleep well,

kat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 13 Apr 12 - 03:55 AM

Haven't checked in for a while, sorry to hear the latest news, lets hope this hospital can find out what is wrong and help your daughter recover. thinking and praying for you all.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bonnie Shaljean
Date: 13 Apr 12 - 04:21 AM

Hang on Tam, hang on. We're with you. Reading Galen's Facebook entry has made me feel a bit better. Love to you -

B xxx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 13 Apr 12 - 04:30 AM

Morning all. Thank you for your thoughts. I didn't sleep too badly (woke 3 times) but when I woke at 4.21am I just stayed up. It is tough being on a different time zone. Have to wait until people are awake to get news. Not exactly how I planned to spend my birthday.

My only wish this year is for Hilary's good health!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 13 Apr 12 - 06:19 AM

may your wishes come true

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 13 Apr 12 - 11:16 AM

Ditto Sandra.

Happy Bday VTam!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 13 Apr 12 - 02:28 PM

Happy Birthday, Tam! May this be the beginning of a very good year for both you and your daughter.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: katlaughing
Date: 13 Apr 12 - 05:16 PM

Happy Birthday! You are at the top of your yearly cycle now...a good time for new beginnings and an upswing in things! May it be so for you and for your daughter.

kat

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 13 Apr 12 - 07:53 PM

Hope you have allowed yourself to celebrate today, VT. You are worth celebrating, you woman of fortitude!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 13 Apr 12 - 08:58 PM

Include yourself in that Janie. We women of fortitude. Some of us, no matter how much S@@T life throws our way manage to face it squarely and with grace.
Hil is certainly one. I would love to meet her some day.
Celebrate your birthday Miss Tam and some small victories.
Love,
M

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 13 Apr 12 - 09:27 PM

Happy birthday~

My wishes for you are also wishes for your daughter: correct diagnosis and treatment and improvement in health.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 14 Apr 12 - 03:56 AM

Happy Belated B'day T!

Glad to hear Hillary appears to be in good hands at least, and her b'friend sounds like a very grounded individual, which must be of great help too.

Any further news as yet?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Apr 12 - 04:44 AM

You gals and guys are so lovely. Thank you very much.

After several days of quiet on facebook from her she started posting a bit yesterday just before and after my bedtime barring one post in the afternoon "Happy birthday mumma from me and angel ... Not out yet but trying to get better for you." Galen is angel spelled sideways.

Her last post is a picture (taken from the IMC of Fairfax Inova) of her steroid swollen and rash covered face and the comment "I look a like a lizard". The rash does NOT look like lupus at all. It looks like loads of freckles dotted with acne. Very strange. We may have seen the end of her creamy complexion, but I am not saying anything. Not a biggie to her as she studied make up with her stage craft degree. She can make herself look like anything from a grimy Dickensian gutter hag to a starlet and she normally enjoys doing it. This is a kid who when she was 14 had orange and black bands put on her braces and when ibuprofen made vessels burst in her eyes thought she looked so cool and could not wait to go to school to show it off.

They are keeping her on the prednisone because it is getting her platelets and white cells up which were both very low. I suppose this is why they need to keep her in the hospital. They have to control the terrible side effects she is getting from the steroid, such as diabetes from that the leg blood clots.

Looks like this team does not want to let her go until they have a proper diagnoses and know she is safe with the treatments. Fingers and everything else crossed.

I haven't heard any more about the pain she has been in. Perhaps she is just so chuffed to not be throwing up anymore,she doesn't notice the pain. Or maybe the mix of meds controlling inflammation of liver and spleen is really doing the trick.

Will be going out to dinner tonight for birthday as we could not get reservation for last night.

Hugs all. Thank you so much. Can't describe how grateful I am for you all.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Apr 12 - 12:17 PM

Well they still haven't sorted out the pain she is in. As soon as the meds start wearing off she is in too much pain to cope. The joint pain is not the problem uncomfortable as it is. It is the pain in spleen and / or liver.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Hollowfox
Date: 14 Apr 12 - 01:34 PM

The $#@!-reduction candle series is already fired up for you and yours. Thanks for keeping us posted.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 14 Apr 12 - 02:13 PM

All I can say is, keep the faith.

Thinking of youse often.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: mg
Date: 14 Apr 12 - 02:49 PM

have they ruled out hepatitis, including combinations of various types of it?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Apr 12 - 02:55 PM

She just talked to doc

They are bringing down prednisone and upping insulin... All in hopes to get sugars right and ween me off the evil steroid and maybe go on a diff one so my blood platelets and white cell goes back up... Liver enzymes seem ok atm

She has had autoimmune hepatitis. But as you see from above her liver enzymes are good at the moment.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 14 Apr 12 - 03:43 PM

Gnu just said it for me.
Still thinking of you and yours.
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VirginiaTam - cookie crumbled
Date: 15 Apr 12 - 03:23 PM

She seems a bit better today. They are managing the pain better but it is still there.

"Just saw dr if sugar gets better go home tomorrow and I have specialist to follow up with."

No blood clots were found. Her leg pain was due to low potassium. They are only weening her down on the prednisone and has appointment with GI doc for follow up on spleen thing.

I don't know if specialist above is rheumatologist.

She is feeling very grateful for Galen and his family. And said she feels better than she has in a month. Also thankful for all the good wishes coming from everywhere.

I say ditto to the last one.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VaTam -what happend to my cookie
Date: 15 Apr 12 - 03:35 PM

She is moaning a bit about missing the centenary of sinking of Titanic. She has been a Titanic- holic since she was about 9 or 10. She had hoped to have a Titanic party.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Apr 12 - 04:26 PM

"She had hoped to have a Titanic party."

Well, since the lively vessel the "Strong Lady Hilary" herself hasn't sunk, I'd say she has a good Titanic party coming to her.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,I Don't Know
Date: 15 Apr 12 - 05:22 PM

pleased to see better news, stillpraying things carry on improving.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 15 Apr 12 - 07:35 PM

What I don't know said.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Apr 12 - 02:40 AM

She is out of hospital now and feeling much better than she has in a month, though spleen is still giving her great pain. The prednisone almost killed her in 2 ways. Diabetic shock and shock from dehydration and too little potassium. Looks like her life will be a constant balancing of mitaformin against prednisone. Steroids to keep her blood platelets and white cells at health level and mitaformin to bring the sugar down caused by prednisone.

sigh. gotta get ready for work now.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 17 Apr 12 - 05:21 AM

balancing medicines is not easy -

sending more hugs & good wishes

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 17 Apr 12 - 06:58 AM

What a relief to have her feeling better and at home! Life is a balancing act in so many ways; she has more information now than she had, and I hope she can continue to feel better.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Apr 12 - 01:40 PM

AAAARRGHHHHH!

Hilary: hate hate hate this..... need long acting insulin but CVS wont fill until insurance gets ok from pcp.. pcp wont give ok unless go to see her today.. blood sugar at 425
It should be ok. I am going through a insurance liaison that I met at the hospital so I can get the meds
chai tea (cinnamon) working went from 425 to 395 in past hour

Me: does stress raise sugar levels? If so perhaps you should raise that with the PCP. Seems like she wants appointments for the sake of getting more insurance and your co payments.

Hilary: That's what I told my liaison.. and she tried hospital docs now is going after my pcp.. I am so gonna change that bitch .. She saw my sugar was at 422 two days before landing in the ER for a second time with high blood sugar. She said stop eating fruit and just left the room.

Me: medical malpractice?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 17 Apr 12 - 02:23 PM

medical malpractice... Apparently not.

Not unless she has lasting injury (or death) that is proved to be directly related to the PCP's negligence or mistake.

Sneaky isn't it. PCP probably knows this and is just trying to milk the system for what she can get. If Hil does not make appointment to see her than the responsibility falls back on her own shoulders. She is still sick, in pain and exhausted and now has to go out again to PCP in order to get the medication to keep her from going into another severe diabetic incident.

How do seriously ill people cope with this system? It is horrendous.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 17 Apr 12 - 02:28 PM

Same kinda crap here. Even if you are in a hospital, unless you have someone there to stand up for you when you are very sick, the staff will screw you over.

Keep the faith.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Apr 12 - 02:02 PM

As of 19 hours ago PCP had prescribed a different type of insulin but CVS was out of this med. Mentioned that sugar was spiking due to taking prednisone that morning and now needing to take another dose with no insulin to mitigate the reaction.

Not a peep on her facebook since then.

Worry.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 18 Apr 12 - 02:28 PM

What is she eating in the meantime..obviously we can't recommend from here with this complicated a case, but I would think that anything that would cause blood sugar to rise in a regular diabetic prone person..fruits, juices, pop, starches of any kind...would probably make it worse...green vegetables, healthy fats and meats would lower it..but again, her situation is so complicated that ordinary situations might not apply or her eating may be so restricted that she has to eat the bs raising foods and take the insulin...it is unfortunate that she will probably never find a doctor that could tell her the best plan..but that is almost universal.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Apr 12 - 04:24 PM

The deal is her autoimmune is attacking hepactic and splenic portal vein system causing hypertension in the portal vein, inflammation of spleen and other portal vein organs (stomach, liver, kidneys, etc.)

The spleen is not releasing white blood cells and platelets back into blood stream causing
   1) it to get enlarged and painful
   2) putting her at risk of bleeding to death due to inability to clot (platelets) and inability to fight infection (white blood cells)

SO

Put her in hospital for nearly 2 weeks 13-24 March to try and figure out what is causing problems and how best to treat.

They treated this with high doses of 2 steroids. Then changed to high dose prednisone which is working slowly to get her platelet and white cell count up. Sent her home.

BUT

Prednisone was causing sugar to spike really high, creating a diabetic reaction. She is not diabetic. The prednisone is making her so. She has adjusted her diet as she has been instructed, but it didn't matter much

BECAUSE

the gastritis, splenomeglia and possibly the sugar spike made her so ill she could not keep food or drink down. 5 April back in ER (different hospital this time) and they admitted her. Put her on mitaformin for the sugar problem and sent her home.

Went to PCP couple of days later and Hil's sugar was 422. PCP said stop eating fruit and left the room. Appointment over.

SO

She became dehydrated and her potassium went dangerously low. So back in the hospital this last time from 12 - 16 April with sugar at 722 and doctors livid that a diagnoses proper treatment had not yet been found.

Hilary is now up to speed with clocking how she feels, checking her sugar levels drinking lots of Chai tea with cinnamon (no sugar) and trying to stay on top of the sugar spikes with insulin if her damned PCP will only frigging prescribe and CVS actually have it in stock.

She had to wait 22 hours to get the insulin she needed and the rest which CVS gave her a hard time about again. Turned out the rep was not looking at the correct fields or screen on computer and tried to tell Hil she could not have her prescriptions. Hil demanded to see another CVS rep and she sorted it out. I shudder to think if Hil had not the energy or presence of mind to be assertive about it.

All her meds - prednisone, pain, and nausea pills and anxiety meds and about 10 days worth of insulin = $125.00. The insulin being the most expensive, the most critical to her needs and what she got the least of. I fear her insurance has something to do with this.

Looks like I need to send another payment to her, but I can't for a week until PAYPAL sorts out the 4 fraud transactions that went out of my account to 4 different Polish men this past Monday.

Hucking Fell I am completely wiped.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 18 Apr 12 - 05:08 PM

One thing that can mimic insulin and is used in cats is green beans...if she can eat vegetables this would provide with diabetes fiber and would probably not hurt her in any way. They say plain cinnamon sprinkled on foods will lower blood sugar...as always, this is such a severe case that nothing should be taken as advice.   mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 Apr 12 - 05:19 PM

oh she is loving the chai tea with cinnamon and has been using that. I will tell her about the green beans

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 23 Apr 12 - 05:11 PM

Latest update or downdate

Very worrying that sugar still hovering between upper 300s and upper 500s. Can't seem to get the level down for any length of time. The endocrinologist and the rheumatologist have both stated that the docs in the first hospital should never have started her on such a high dose of prednisone. That this is the cause of her diabetes. Also said the hospital should not have released her when her sugar was climbing unchecked.

Well she is absolutely unable to work in this state. The pain in spleen and portal vein is being controlled by about half the dose of pain meds she was on before. Good but it is still so much pain killer that she cannot drive safely nor function at work. Still suffering severe nausea when the sugar rises as it does after every dose of prednisone.

She has been experiencing prednisone insomnia (proven by all the middle of night posts on her facebook) and what appears to me more than her usual quirky mania. Some of her posts are not like her at all.

She is flat broke from medical co pays and prescription meds. Insulin is criminally expensive as are the sugar test strips when you don't have a prescription for them. Her PCP neglected to add them last time Hil had appointment with her. I sent another $400.00. But this is unsustainable.

She has completed the Family Medical Leave Act forms and is working on Social Security Disability forms. Some think she has a case for medical malpractice. I think you need to already have money to get anywhere with such claims. I don't think she can even get lost income and medical out of pocket back, unless those 2 specialists provided written corroboration that the first hospital really messed up her care and caused the diabetes. NOT LIKELY as docotrs protect each other. And that won't be enough in Virginia unless they can prove the diabetes will be a permanent irreversible condition. Too early to know that.

Well thank you all. Hopefully next news will be better.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 23 Apr 12 - 06:09 PM

I hope so!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 23 Apr 12 - 06:47 PM

I don't think the other two specialists would have to provide the basis for malpractice..there are expert witnesses etc. and there are procedures to follow..if they followed procedures they are probably OK but if it is standard practice to not send someone home with climbing sugar, as I would hope it would be, then all sorts of other specialists could testify.

See if there are malpractice lawyers in the area...they usually take on a win the case basis I think. mg

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 23 Apr 12 - 10:50 PM

My heart continues to go out to you and your daughter. And my prayers continue to go out for you both, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 02 May 12 - 01:49 PM

How's Hil doing? Hope there's been some progress?
Love to you both x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 02 May 12 - 02:02 PM

No news on facebook.

Last message to me stated still having problems controlling sugar, they've started weaning her down on prednisone. Yesterday morning she was complaining of return of bad spleen pain. I asked if the docs are monitoring her white cells and platelets but have had no answer.

Thanks for asking.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 02 May 12 - 09:54 PM

Still praying.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 03 May 12 - 05:10 AM

Still here, Tamara.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 03 May 12 - 09:16 AM

what a situation to have to follow from such a distance

love & hugs to all

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 03 May 12 - 09:47 AM

Sandra said it all.
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 03 May 12 - 02:33 PM

She sees gastro doc tomorrow. she is starting to feel really unwell again which I think indicates her spleen is trapping her blood again.

I can't help wanting everything to happen immediately or better yesterday or last week or last month or freaking last year.

Why they let her get so bad that other organs are being damaged, I don't understand. Probably because insurance dictates what they can and cannot do based on some stupid formula.

I hate, loathe and detest "for profit" health care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 03 May 12 - 02:48 PM

Got my fingers crossed.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 03 May 12 - 10:58 PM

Mine, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 04 May 12 - 11:03 AM

Refresh

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: SINSULL
Date: 04 May 12 - 11:43 AM

My thoughts are with her too.

If no one can pick her up from the hospital, don't they have to keep her? Just a thought.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 18 May 12 - 02:16 PM

arrrgghhh... CS -- I've lost your phone number. Do you still have mine? How do we communicate?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 18 May 12 - 10:06 PM

How is you daughter? I've been waiting to see this thread again. Still praying for her and for you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,CS
Date: 19 May 12 - 05:25 AM

Off out this afternoon T - will ring you later this eve.
Hope things ticking over OK with Hil?
:) x

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 20 May 12 - 01:28 PM

"I hate, loathe and detest "for profit" health care."

I'm sure with you on that. It seems to me that any country where people without jobs and/or money are expected to pay 2 to 8 times (8 is a guess; it could well be higher) more for their medical treatment/drugs than people with jobs/money simply cannot consider itself truly civilised. (Seems to me the folks without jobs/money end up subsidising the medical care of those who do... now is that the wrong way round or what?)

And the hoops that even people with jobs (i.e. insurance -- but only if their jobs are full-(rather than part-)time) have to jump through -- and the runaround they get when they try to get the insurance to pay out... is incredibly stressful -- and (more than) enough to make one sick/keep one from getting better. I know of so many very distressing stories...

Of course, if you have plenty of money, it's not nearly so bad.

It makes me so angry reading about what Hils is being put through (it's really & truly the very last thing you need when you're life-threateningly ill!) -- and I'm not even her mother. I can only try to imagine how you must be feeling...

Anyway, rant over. Still got my fingers crossed for your daughter -- and you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 20 May 12 - 02:18 PM

sorry I haven't been back. She is still in a lot of pain. So much so, that she is on facebook at all hours which makes getting bits of info out of her easier.

She has been weaned down from 60mg to 15 several times a day. She still needs the fast acting insulin. I am worried that she now has permanent diabetes. 2nd hospital said she should never have been on so high a dose and for so long.

She now has steroid induced goiter. She said if she painted her face and neck green she'd look like a frog.

Spleen is still very large and painful. I can't get an answer about whether or not the docs are bothering to take blood counts to make certain she has enough white cells and platelets to fight infection and stop her bleeding to death respectively. If the spleen is large it means it is trapping the blood.

They discovered she also has a vitamin D deficiency. She is blaming me for that. I told her that is the one problem he has that is NOT inherited.

Binder and Binder are sending some forms for her to complete, they think she has case for social security incapacity. Her fiance's father will help her complete them.

She and Galen are about to move in with his parents into remodeled basement.

I am still sending her money to pay for drugs (fast acting insulin is expensive) and doctor co-pays. Her father did cover the rent this month. And he did get that extra AFLAC hospitalisation policy she took out at work to pay.

She is requesting a letter from her PCP that states she cannot work for a year so she can apply for SSI. As it is, the steroids and diabetes make her so thirty she constantly drinks and pees which means she cannot work. Never mind the effects of pain and painkillers on her personality and mental function. She still cannot drive, so she couldn't get to work if she felt able to work.

She is not happy.

Thank you all for your good thoughts.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 20 May 12 - 07:37 PM

what a system

sending love to you & your daughter

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 20 May 12 - 08:30 PM

I hope she gets SSI. Something else to pray for!

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 09 Jul 12 - 04:50 PM

she and Galen now moved in with his parents

all her bloods look pretty good

blood sugar near enough normal now she is weaned down to very low dose prednisone

still in lots of pain around the spleen and liver

spleen still enlarged so they think blockage in hyper portal vein

another endoscopy and colonoscopy today, even as I type this

send good vibes for good outcome, please

can't wait to see her next week

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 09 Jul 12 - 05:25 PM

May this next week go quickly- and the time with your daughter be slow and satisfying.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 09 Jul 12 - 06:32 PM

Good vibes for both of you and your families are on their way.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 09 Jul 12 - 08:12 PM

Ts&Ps from here too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 09 Jul 12 - 10:07 PM

what Eddie said.

ending hugs

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 10 Jul 12 - 06:30 AM

I'm wishing you and yours all the very best of kind thoughts and good fortune. VT.
Take care.
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 10 Jul 12 - 07:48 AM

ending hugs?

SENDING hugs

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Herga Kitty
Date: 10 Jul 12 - 08:31 AM

Thanks for the update Tam, all best wishes and hugs from me too!

Kitty
xx

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 10 Jul 12 - 08:12 PM

Apparently my post made yesterday didn't "take."

I'm glad to learn you are going to get to see your daughter, VT. I assume you are headed stateside?

continued good thoughts and meditations for all of you.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 06 Oct 12 - 01:50 PM

Well finally a diagnosis.

"saw the dr yesterday.. and retests came back I deff have lupus and sjogrens and myalgia.. and apparently the sjogrens is what has caused my hypothyriodism and auto immune liver disease... on the plus side I don't have syphilis."

Apparently the first tests produced a false positive on syphilis which is not uncommon. Hopefully the immuno suppressants will get her liver and spleen to calm down and ease some of the pain she is in. She still gets terrible stabbing pain inside when she moves, draws in a deep breath. Pain itself can suck all the energy out of you.

I did have nice visit with Hillie and her fiance and his family. Super nice folks. It was too short.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 06 Oct 12 - 07:03 PM

Wow. The only good thing is that it is better to know than to wonder. When I was diagnosed with lupus after months of no-answer testing it was a great relief; at last we had a goal. In my case it worked; I went into remission, which has basically held for 30+ years.

The best of luck and wishes to your daughter, Tam.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 06 Oct 12 - 07:12 PM

Agreed, Ebbie. Hopefully this is a big step forward.

Ebbie... thread drift... at what age were you diagnosed with lupus? Why/how did it go into remission. I ask because this is close to my heart with a cousin.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 06 Oct 12 - 08:01 PM

At least she now knows what she is dealing with. Continued good thoughts....

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 07 Oct 12 - 07:36 AM

wonderful news - getting a correct diagnosis is the start of treatment & healing

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 07 Oct 12 - 02:38 PM

What Sandra and Janie said, VT.
Best regards from Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 20 Oct 12 - 09:23 PM

I hope her treatment goes well.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Ebbie
Date: 20 Oct 12 - 10:37 PM

VATam, how is your daughter's treatment going? I hope she responds quickly and well.

I didn't see the followup on this thread and missed gnu's question. I was 31 when I developed the 'butterfly' rash and after a year of non/mis-diagnosis lupus was finally given as the answer. It was treated as a derma problem and the treatment was primarily cortizone cream.

This was back in the days when doctors thought that there were different versions of the disease, i.e. the systemic type and the skin type. Nowadays they accept that they are different stages of the same disease, and some people don't reach the same stages.

10 years after the first diagnosis when I was 41 I came down with the more severe aspects of the disease and was treated with high doses of prednisone and several other joy-making things. I started with what I thought was flu in February of that year, by April I had to stop working, my worst month was June and I had my last shots in October, all in the same year, 1976. I have not had any real problems since.

I was incredibly lucky. I wish the same for your daughter, Tam.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: YorkshireYankee
Date: 21 Oct 12 - 03:37 PM

More crossed fingers here, and heartfelt wishes, too.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Jan 13 - 03:01 PM

Hilary is being treated with Hydroxchloroquine and Methotrexate and Levoxothyrine for the autoimmune problems and Vitamin D for the deficiency, same as me. So far she is having a lot of long bone pain as I am. She like me has decided to wean off of pain meds because she worries about the side effects and the dependency.

At the moment her Social Security Disability application (rejected just after Christmas due to lack of GI doctor reports) is in appeal. All the other medical reports from Rheumatology and PCP where good strong reports supporting her application. But she needs the one from GI because it evidences that 2 organs are compromised by her condition.

Turns out her gastroenterologist office was over charging for reports to send to her SSA lawyer and then not sending them or providing test results with no narrative which is required.

Hilary sent a very strongly worded email to his office today about the lack of answers and poor quality of care she had received since being referred over a year ago. Remember before she ended up in hospital the GI doctor had one appointment with her and then relegated her to one of his PA to deal with. This PA only wanted to talk about Hilary's diet. It was a few weeks following this she ended up in hospital for over a month with enlarged spleen, low red and white blood count and inflamed liver.

Anyway back to the letter. Today GI office staff called Hilary to tell her that they would refund her the charges they made for the reports and to advise that the doctor will not provide narratives and he will not say why.

Need prayers that this doctor will provide the needed narratives to go with test results and that he will not intentionally muck up her actual care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 14 Jan 13 - 03:07 PM

And while we are at it, I think it is disgusting for any doctor to charge for needed reports on patient. Christ sake. She lost her job almost a year ago. She's living hand to mouth and occasionally tapping me for medical and prescription copays. Where is she supposed to get the money to pay for reports required by Social Security Disability?

Another case of the rich robbing the poor.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 14 Jan 13 - 08:57 PM

I am so sorry that this has happened to her. Red tape is hard enough to deal with even when it is not twisted.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Bobert
Date: 14 Jan 13 - 09:12 PM

Keep fightin'... You will win...

B~

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 14 Jan 13 - 10:57 PM

what Bobert said

love & hugs

sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Keith A of Hertford
Date: 15 Jan 13 - 03:20 AM

I hope sense and compassion prevails.
Best wishes,
keith.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: wysiwyg
Date: 15 Jan 13 - 08:20 AM

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VTam on another PC
Date: 15 Jan 13 - 12:33 PM

Hil just got email from GI stating that he won't provide narrative because her problems are her own fault and has discharged her from his practice. He will not see her any more.

Also they charged her account for those reports withough notifying or invoicing her. They just showed up in her bank statement.

Can they do any of the above?

I told her to get statements from her PCP and her Rheumatologist stating that she is a cooperative patient and that her condition Sjogrens and Lupus is known to involve organs such as liver and spleen. Her spleen has been a problem since she was 14 so I don't think the GI can accuse her of drink problem. Besides she was too ill to eat or drink much of anything for months early last year.

arrghhh

Calling all help.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Jan 13 - 01:38 PM

Good grief

Long email from GI stating Hilary did not do what was advised, namely see Rheumatologist and Endocrinologist.

1.   she tried repeatedly to get appointments with both. Repeatedly refused without referral from doctor.
2.   She finally go appoitnment with Rheumatologist and ended up in month long hospital stay just before the appointment. When she got out of hosp the nurse at GI office refused to refer her again.

3 endocrinologist finally saw her while in first hospital and only wanted to talk about the diabetes. Did not believe her diabetes was steroid induced which is was proven to be as soon rheumtologist in Maryland (she finally got one to see her after she moved from northern Va to Md with her fiance) weaned her off of steroids. The diabetes went away.

there is so much more.

anyway Her social security lawyers are on it. They are talking to GI now and they are not happy about his and his staff's treatment of Hil. Seems they have been bullying her and also butting charges on her credit card illegally.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 15 Jan 13 - 02:13 PM

"anyway Her social security lawyers are on it." And other statements.

I hope they fry the bastard and I hope they can aid in her problems getting proper care.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Jan 13 - 02:15 PM

arrghh arrghhh arrghhh

Told her she missed appointments with his PAs but it was because she was too ill to drive to them.

He stated in front of one of Hil's friends who drove her to one appointment that he would not put her in hospital for tests he said because he was trying to save her money. So he signed her off work and told her to keep coming into his office for the tests. Which she did for some but became too ill to drive to others. Shortly after she ended up in A&E and lengthy hospital stay.

She has never mentioned it to the GI, she never threatened him. But this email she sent she told him that she did not know why his service is award winning, because she has not been treated well by his staff, they do not give referrals to other specialists that he requested her to see, they charged her credit card without her knowledge.

She ended up in hospital having to have all the tests he had recently done, done again and now charged on her insurance and co pay twice.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 15 Jan 13 - 02:49 PM

the lawyers are not suing. They are just helping with Hil's social security disability application.

Now she is depressed. Thinking back on it all chronologically and now with clearer mind, she fears that GI's decision to not put her in hospital for the tests and his staff's unwillingness to refer her to other specialists is the cause of her getting really ill and losing her job and feeling so sick now.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 15 Jan 13 - 03:50 PM

I love you, and sorry i cause such stress.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Jan 13 - 04:34 PM

Tam's Daughter- We care about your mother, and so care about you. Hang in there; I hope you can find a Patient Advocate to lend a helping hand in sorting out the blankety-blanks who have been mistreating you.

Hugs for Mother and Daughter.

Maeve

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 15 Jan 13 - 04:36 PM

Thank you very much, i would just be happy to have it all over with so i can move on

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Jan 13 - 04:40 PM

Yep. I know the feeling. Look; I'm up in Maine. Your Mother has my email address. If I can listen, talk to medical friends for advice, etc. please just let me know.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 15 Jan 13 - 04:45 PM

one thing i wanna know if what the gi dr has done in the past and now some kind of illegal dealings or malpractice

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Jan 13 - 04:52 PM

It seems to me you can check on complaints to the state Medical Board, and I wonder about the Better Business Bureau as well. To find out if his actions are illegal rather than simply unethical, unprofessional, and immoral, you'd need to talk with a lawyer with expertise in medical matters.

We have some crackerjack folks here, with many different areas of expertise. Perhaps some of them will chime in.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,mg
Date: 15 Jan 13 - 04:54 PM

Do everything you can from afar to document all of this. Have her get together with her friends and reconstruct just everything. Post stuff as you get it here or elsewhere. Probably don't use names. Put every request in writing. Have her copy and send you every single bill, charge card statement, copay, medical record. It sounds like malpractice and some so=called ambulance chasers might be salivating at the thought of a lawsuit.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 15 Jan 13 - 05:37 PM

I am guessing you, Tam's daughter, are not the only patient this GI has treated this way. If you can't nail this doctor, he/she will continue to treat others badly. I hope you have enough strength to fight this battle.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: olddude
Date: 15 Jan 13 - 06:23 PM

file a complaint with the state medical ethics board, they will make his life crazy and fine the crap out of him or even suspend his license. If nothing else they will investigate and have he and his lawyers pull every damn chart on every patient over the last 10 years.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 15 Jan 13 - 09:42 PM

VT's daughter, continuing to send good thoughts to you.

What is in your own best interest right now in terms of your quest for medical care, health and healing, managing your illness, and obtaining the financial resources to meet your needs and have medical insurance? Weigh the costs and benefits of your choices regarding how and where you expend your energy, attention and emotional resources.

The disability determination process is convoluted and difficult. Accept that. Ask yourself if the best use of your time and energy right now to fight with the GI doc., or if most of your attention is best directed toward getting the medical evaluations and treatments you need for your health and in the process, obtain the necessary medical evaluation and documentation with respect to a disability claim. Only you can make that cost/benefit analysis because only you know what resources, emotional, mental, spiritual, financial and physical you have to expend and how those resources are best spent on your own behalf.

Consider that legal advice needs to come from attorneys, not from family, friends or internet forums. If you think you have an ethics complaint, pick up the phone and call the appropriate licensing board. It is free, and they will have staff to guide you to a certain extent, and also can refer you to patient resources who can work with you. If you think you have a malpractice case, consult with a law practice that specializes in medical malpractice.

My heart goes out to you, as well as to your Mom and all who love you, as you continue to struggle with all these serious health issues.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: maeve
Date: 15 Jan 13 - 10:08 PM

Nicely said, Janie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 15 Jan 13 - 10:27 PM

Wow that ethics board thing sounds hard core.. but i dunno if i could do it... i am usually timid but sometimes i get this tick that goes off ever since i got sick.. another things is the fact that the email i sent was a complaint about the charge then his office slipped and told me it would be refunded .. when i hadnt sent a check to pay it yet.. thats when i found out they took it from my bank w/o my ok

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 15 Jan 13 - 10:28 PM

plus the whole ssd thing should take no longer than end of feb.. i hope

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ranger1
Date: 15 Jan 13 - 10:47 PM

Well, keep your chin up, kiddo. Janie has given excellent advice and Maeve means it when she offers help. Both of these wonderful women have been absolute rocks when I needed them and you can't ask for better people on your side.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 15 Jan 13 - 11:00 PM

:)

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,VaTam on tablet at daft o'clock in the morni
Date: 15 Jan 13 - 11:44 PM

Concentrate on getting the right treatment and the SSD. Collect paper trail of all events and costs and put in chronological order, but don't think emotionally about it all. You don't need the added stress. As soon as you start feeling annoyed by recalling an event, get it down on paper or pc and put it away. Then do something else. Don't dwell on it.


Love you baby. Things will be alright if you pay attention to what is important (your health) and remember how much and by whom you are loved.

Thank you so much to my Mudcat friends for lifting me when I am low and for offers of emotionsl support to my daughter and to me.

You are so wonderful.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Janie
Date: 16 Jan 13 - 12:22 AM

VT's Daughter,

Question re: the stage you are in regarding SSD. Are you actually in the appeal process, or are you in what is called the reconsideration process? Reconsideration decisions are usually made within 60-90 days of the the request for reconsideration. Actual appeals may take much longer.

When did your disability attorneys come on board?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: mg
Date: 16 Jan 13 - 12:26 AM

ask for a scanner on freecycle if you don't have one. if you have friends who could do this for you that would be best. scan everything and give it a searchable name.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: fat B****rd
Date: 16 Jan 13 - 04:15 AM

I wish I had more relevant advice. Many people here are well placed to be constructive AND caring.
My very best regards to you both
Charlie.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: Sandra in Sydney
Date: 16 Jan 13 - 06:54 AM

best wishes to Tam & daughter & their families & friends from across the big pond

love from sandra

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: GUEST,Tam's daughter
Date: 16 Jan 13 - 08:28 AM

the attnys have been working on it since august if my ra didnt have a baby this would be going a lil faster

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: gnu
Date: 25 Feb 13 - 08:11 PM

Update?

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: VirginiaTam
Date: 13 Mar 13 - 07:09 AM

Sorry I have been a bit out if of late.

At the moment attorney's are working on the social security disability appeal. They have 2 letters (RA consultant and PCP). Her gastroenterologist refused to do a letter and in fact after she sent a very strongly worded complaint about the poor care she received from his clinic, he sent a letter stating that she had not followed his advice on many points, especially on being seen by a Rheumatologist.

Turns out that she had tried but was repeatedly obstructed by his staff when she asked for a referral letter. They refused to supply one and the Rheumatology clinic refused to take her without one.

When she finally did get appointment, she missed it as she was landed in hospital for several weeks with diabetic reaction to overdosed prednisone which the gastro doc had prescribed.

Hil pointed all this out to the gastro doc and to her attourneys who are looking into this as a separate matter.

She has diagnoses of Lupus, RA and Sjogrens all of which are included in the SSD list of disabilities.

Currently she on all the disease controlling drugs for conditions. Off prednisone but still has some sugar drops which make her feel pretty ill. She is losing weight (a bit too fast for my likes) though not trying to. This may be due to disease and/or meds.

Her symptoms around spleen and liver seem to have lessened while joint and bone pain and fatigue have increased.

She is still paying for cobra on health insurance. Has no benefits whatever, such as food stamps, medicaid, welfare or housing assistance. We are hoping once the SSD comes through then she can start applying to these other things to help with her daily living expenses.

Her fiance Galen has completed Medical Assistant training and recieved his certificate. He has interview for job with salary and benefits at nearby cardia clinic this Thursday 14 March so good wishes and prayers would be lovely for his success at landing this position.

Wedding date set for 26 July 2014 so I now have to start saving aggressively towards visit and whatever I can contribute to wedding.

Subject: RE: BS: Mudcat Mojo - VaTam's daughter
From: ChanteyLass
Date: 13 Mar 13 - 09:06 PM

I'll definitely pray that Galen gets the job,and I will continue to pray that Hilary gets the legal matters sorted out, qualifies for SSD, and feels some relief from her symptoms. And I will certainly hope that you are able to save enough to go to the wedding!