Doctor Distress! Not sure what to do.

[Jennifer J]

Hi, Everyone.

The PCP who replaced my retired doctor is very nice but she doesn't know our illness at all. (She told me she didn't know it and was going to read about it.) I saw her this past month but was too tired to print and share any of the recommendations that have been recommended to me by nice and very helpful people on this site.

Anyways, I told her I really need a social worker. I don't have enough food to eat or the ability to prepare warm food, I need help to get essentials things are falling apart (shoes are duct taped together...), help to make phones calls to try to find more help or resources, and I need better housing (asbestos crumbling from the ceilings - I had it tested, mold, next to freeway, can't easily get support into my building....). My room, which is the best location to be for me in this building, is about a block and a half (no exaggeration) to the front door. So even to have any help I need to be able to go there and back twice to let them in and out.

I just received a call from a physical therapist who said she received a referral from my doctor for her to come give me physical therapy. I can't do that. I told her so. I said I have CFS really bad and that isn't what I need. I said that I was seeing a CFS doctor who would say so. (I've only seen Dr. Chia once and that was over a year ago. He knows how sick I am.) It wouldn't have been in my best interests to say to her that from everything I've read and learned on the internet from ME/CFS specialist and forums this is not what I need or can do at this time.

What can I do? I'm so afraid how this is going to look and go in my chart. Patient is non-compliant... My survival is contingent on disability and other agencies. This will cause me more problems if it goes in my chart that I refused recommended treatment. I'm thinking my doctor when she read up on CFS has read that physical therapy is helpful. I'm not at that place and I'm doing the best that I can with what I have and where I'm at.

Awww, pout, I have too much to deal with that I can't get to. Trying to undo this is going to set me back more than I already am with everything else.

I need words, what can I say to my doctor? I'm so bad at this, and even more so when it comes to what to say to a doctor (concerns about how it is interpreted and what will end up in my medical chart which ends up affecting so many things).

I truly am so thankful for all of you on this site. I lay in bed and read the forums and don't feel so alone. I can't thank all of you enough for the contributions you make and your knowledge. I still want to and will personally thank, with more than a like, people who have responded to my previous post and the person who messaged me.

My thoughts are with you all.

 

[rosamary]

Hi. What an awful situation for you to be in. Is it possible that if you saw the physical therapist, the physical therapist would be in a position to report back to the doctor that you are in need of much more help than physical therapy?

I really don't know the answers to your situation but that thought crossed my mind.

I hope things improve for you.

 

[*GG*]

Is it possible that if you saw the physical therapist, the physical therapist would be in a position to report back to the doctor that you are in need of much more help than physical therapy?

Perhaps, but I think that would only be if the Physical Therapist had other training. Otherwise, I think they will find something wrong with us, and say, yeah, you need PT to strengthen this muscle, which will help with pain and/or function of that.

I have had lots of PT, many different places. I wasn't in bad of shape as JJ, I was active, and they found weak muscles on me!

GG

 

[SOC]

@Jennifer J,
I suggest calling your PCP and saying that apparently there has been some mistake . You said you needed social services and some silly administrative person set you up with a physical therapy appointment. Not the same thing at all. Oh my, doctor, isn't it funny how these things get so messed up? Now, could she please correct her office staff and get you an appointment with a social worker who can connect you with social services?

If the doctor waffles and goes on about you needing physical therapy, ask her if, in her reading about ME/CFS, she got around to reading the recent IOM report. Have a couple of very short, relevant quotes in hand to refute any claims she might make that any exercise therapy is what you need.

No need to assume the doctor is an idiot and recommended a contra-indicated therapy for you. Better to assume that there was a mistake somewhere in the referral process and of course she will want to correct it. You are not being non-compliant, you are just correcting an administrative error.

If you can't correct the situation that way, it is probably in your best interest to have another appointment with Dr Chia and then have him talk to your PCP... or at least give you some documentation that physical therapy is not what you need.

 

[SickOfSickness]

Can you go see a different doctor soon? I think it's rarely ever worth trying to change the mind of a doctor.

Even if you switch doctors, maybe type a letter and get it added to your chart, so future doctors see it along with whatever she wrote. That way, they see you have many reasons why you didn't go to PT, and a reason why you switched doctors (that she didn't give you what you really needed).

 

[Tammy]

What is your situation now with disability? If you have Medicaid.......depending on which one you have can pay for help at home. Have you applied for food stamps? Also............have you applied for HUD or Section 8 to help with rent. Sorry for all the questions.............just trying to figure out where you are at with all this.

 

[Tammy]

I just realized.....with all my questions.........you are probably aware of all the above and that's why you are trying to get a social worker to help with all these things? Tell your Doctor next time you see her that you need help with activities of daily living.

 

[Kati]

I agree to phone your dr's office back and say there has been a mistake, that your most urgent needs were social work. Asbestos falling from the ceiling and mold on top of that is unacceptable. Access to the complex's front door seeems unbelievably far and i bet you can get PEM just walking there let alone come back

I hope this resolves really quickly for you, @Jennifer J, I am so sorry you are in this situation. I am very glad you are here on PR forums. Know you are not alone.

 

[Dreambirdie]

@Jennifer J I think SOC has the right idea. I would not add anything to it.

 

[minkeygirl]

I hate to sound negative but I wouldn't count on too much from your doctor. I know this from personal experience. Docs are limited because of insurance regulations.

Try to get certified as home bound.

Look for meals on wheels in your area and other food delivery places.

Scan Google for your county services and private places that help the disabled. My county had some help options. Your city might too.

Look for religious groups that may be able to help with food pantries and other things.

Section 8 is very hard to get. Most places only have the list open a month a year. If you get in the list you fill out an application to see if you qualify. There is at least a 5 year wait to go through the approval process. Again I know this from personal experience.

It takes time and energy we don't have but the internet is your best friend when it comes to finding services. Maybe one place can't help you but they may know someone who can.

Also look into the Americans with disabilities act. There are laws people have to abide by re housing and the disabled.

 

[Tammy]

Section 8 is very hard to get. Most places only have the list open a month a year. If you get in the list you fill out an application to see if you qualify. There is at least a 5 year wait to go through the approval process. Again I know this from personal experience.

I think it depends on where you live. I applied in June of 2014 and was approved just this month..........so the whole process was just shy of 1 year.

 

[ahimsa]

@Jennifer J , In addition to the suggestions above, one other option is to call 211. They should be able to connect you with social services in your area, let you know what the requirements are, etc.

I'm not sure whether all areas in the USA have 211 set up to connect to the right place but I think many do.

I googled and found this web site for California - http://www.211california.org/ . But the easiest thing is probably just to call 211 rather than try to navigate a web site.

Sorry about the unhelpful referral from your doctor. Good luck finding the help you need!

 

[Jennifer J]

Ohhh, thank you everyone for your responses. I am so moved. I will respond more to each of them another day. I'm fairly crashed right now and have a hoop to jump through tomorrow. Thank you again! I want to say more to express my appreciation for each of you. I'm struggling with words. I think it took me 5 minutes to write that last sentence.

 

[Kati]

Ohhh, thank you everyone for your responses. I am so moved. I will respond more to each of them another day. I'm fairly crashed right now and have a hoop to jump through tomorrow. Thank you again! I want to say more to express my appreciation for each of you. I'm struggling with words. I think it took me 5 minutes to write that last sentence. Ekkk.

Eeek, jumping hoops. Sounds like the circus!

 

[barbc56]

@ahimsa

I had no idea about this service. It's in my state. I could have used it a couple of times instead of trying to figure out what to do! Maybe this should be a sticky. Don't we have a one for help?

 

[Eeyore]

You should also be able to call your local social security office for questions regarding SSDI, SSI, Medicare, and Medicaid. If you are not able to pay for someone to assist you in obtaining benefits, they will help you (although, I suspect, not as effectively as if you paid someone). You might consider hiring a lawyer as they generally work on contingency anyways (so you pay nothing unless they win).

 

[belize44]

I think it depends on where you live. I applied in June of 2014 and was approved just this month..........so the whole process was just shy of 1 year.

I think it depends upon which Section 8 you apply for. I am not on it now, but when I applied for city based housing, the wait time was about one year. The county based assistance took a little longer, but was not too long either. It may also depend upon where you live; in a heavily congested area or something like that it could take five years.

 

[Gingergrrl]

The best way to get a social worker or care coordinator to do a home visit is usually not through a random doctors office unless they have a special program set up for this.

I would contact your local multi service senior center (even if you are not a senior citizen) and ask to speak with the social worker on intake. If you are not in their catchment area, they may refer you to another center.

Explain your situation and that you are disabled and homebound (diagnosis not important at this point) and they should be able to send a SW to your home for an assessment who can arrange all kinds of in-home services. Some are income based, some are age based, but there is a lot out there (although nothing for ME/CFS itself.)

This is your best bet for LA so hoping San Diego is similar. Best wishes.

ETA: if you qualify for Medi-Cal, you can get an IHSS worker for free or with a small share of cost. If not, and you can afford it, you can hire a private caregiver from an agency.

 

[Jennifer J]

Hi, Everyone. I'm finally replying. Thank you again for your support and suggestions. I apologize if there is a better way for me to have done this. (I'm still learning.) With the fatigue, it was easier to slowly respond this way. I know the things I write below it isn't unique to me, many have dealt with similar and the same. Thank you for having this place to share with each other. (I'm not sure how to make them, I'm sending heart emoticons to you.)

@rosamary Thank you for your kind words. I really don't have the extra energy to do that, and to deal with any possible complications from it at this time. Thanks for the thoughts, though

@ggingues Thank you. I was thinking along those lines. It was good to hear your experience.

@SOC Thank you! I looove what you wrote. It's definitely worth a try and with the spirit of what you wrote on how to express it. I learned a lot from reading that, which I will use. Thank you so much!

 

[Jennifer J]

@SickOfSickness Thank you. I was thinking depending how this all goes, I probably do need to find another doctor (easier said than done for many reasons). There have been some other things that have me thinking I need to make a move.

Also, something I've been wanting to find a way to do for years, thanks to the encouragement from a member here, and reading others posts, I'm as I can do so really going to try to find a way to go see a specialist in Northern CA. I'm still trying to go back to see Dr. Chia first. My ride fell through the last time I was going to see him. Thank you for the suggestion to type a letter to add to my chart, too. That's a good idea.

Hi, @Tammy. The simplest words I struggle with. Thank you, that's good and easy. I will tell her that I struggle with the activities of daily living.

I have applied for Section 8. The wait list here the last I heard is a 9-10 year wait! I have several more years to go.

Food stamps, 211 had me apply a couple of years ago and again recently. What a fiasco they bounced me around for months a few years ago because they kept misplacing my application, then had me fill out and send in more stuff, and then told me that I wasn't eligible. Found out I'm not eligible this time, too. They have equations that they put all the information into. Even if you are way below the financial requirements you can still not qualify. I'm not too surprised. Been dealing with agencies for years, I just wish things were written more as it is so my, and others, time and energy isn't wasted.