BS: Mudcat Mojo - VaTam's daughter

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!

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: gnu
Date: 25 Feb 13 - 08:11 PM

Update?

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: 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: 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: 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: 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: 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: GUEST,Tam's daughter
Date: 15 Jan 13 - 11:00 PM

:)

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 - 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: 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: maeve
Date: 15 Jan 13 - 10:08 PM

Nicely said, Janie.

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: 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: 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: 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: 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,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 - 04:40 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 - 04:36 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 - 04:34 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 - 03:50 PM

I love you, and sorry i cause such stress.

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: 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: 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 - 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: 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: wysiwyg
Date: 15 Jan 13 - 08:20 AM

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: 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: Bobert
Date: 14 Jan 13 - 09:12 PM

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

B~

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: 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: 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: 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: 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: ChanteyLass
Date: 20 Oct 12 - 09:23 PM

I hope her treatment goes well.

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: 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: 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: 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: 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: 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: 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: 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: Sandra in Sydney
Date: 10 Jul 12 - 07:48 AM

ending hugs?

SENDING 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: 09 Jul 12 - 10:07 PM

what Eddie said.

ending hugs

sandra