BS: Mudcat Mojo - VaTam's daughter

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.