CFS specialist says I'm too sick to come in

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Aug 25, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Am I on my last gasp for recieving treatments?

    On Monday I missed my CFS specialist appointment. My bothers drove me there, and they took an hour to get there because they were unfamiliar with the area. The doctor left just before we got there.

    I hadn't bathed in 19 days because of extreme weakness. I would have asked the doctor for a nurse to bathe me. The sleeping pills she prescribed for me weren't working well. I was going to ask for new pills or a higher dose. It's hard to walk, to stand and to cook, so I am not eating well. There are also new digestive problems. I was hoping she would have ideas for these things.

    I called this morning to re-book. The secretary told me: "Shannon, the doctor and I have talked it over. You are too sick to come in for appointments. You've missed all your last appointments because you were too sick to come in. Phone appointments aren't good enough, because we need to see you in person. So what you need to do now is get enough food and sleep and see us when you are stronger."

    "That's what I was going to ask her about on Monday," I said. "I was going to ask her about changing sleep meds, because I can't sleep the way she wants me to using these. I was going to ask for someone to help me bathe. I can't bathe. I tried it a couple of days ago, and I couldn't do it well enough to get clean." I trying not to cry. I didn't remember about the food things, and I couldn't think well enough to point out that this isn't going to get better by waiting.

    I thought, This is it. She's dumped me. This was the last chance appointment to make is work, and I was ready and present, and my driver was late.

    Then the secretary said, "We could do phone calls. It's not as good, only 15 minutes, and the charge is $30. I didn't want to offer it because I know your... um... financial situation is... not good." So I booked a call. It's in one month from now. Tentatively booked, she told me.

    I hung up the phone when it was over. A strange calm. I think, This is it. It's over. Nothing worse can ever happen to me.

    I can ask dad to represent me again to my GP. He can ask about a nurse to bathe me once a week (my scalp was so disgusting after 17 days that I wanted to shave all my hair off just so I could rinse my bare head in the sink). He can ask for another sleeping pill to try, or a higher dose. My GP does not do phone appointments, and I can't go in to see him, so I've been going through dad this way. And it's frustrating and inadequate, but it's what I have.

    I feel like I'm invisible. I want a GP who will do phone appointments, at least, and be available.
    ((another battle)) Shannon
  2. IndianPrincess

    IndianPrincess New Member

    Either you or a family member needs to call your doctor's office, find out what hospital he is affliated with and they need to put you in touch with a medical social worker who will get you the at home care you need.

    I think over the phone visits are B.S. How can the doctor physically exam you?

    You need someone with you at home.

    I realize you are Canadian so I am not familiar with what is available for you but getting that social worker is definitely a priority and all else will follow!

  3. jenemc

    jenemc New Member

    shannon....i think you should call and have someone come get you and take you to the hospital to the they can hopefully admit you and get you the help you need. if nobody can come get you, then call and get an ambulance to come get you and get you there. i hope you get to feeling better soon.

    do you have any other females in your family? if so, get them to come over and at least get them to give you a sponge bath in bed or a chair. they can wash your hair also. maybe take you and get you to the beauty shop to wash your hair. let us know how it goes. because you know we all care!

  4. Shannonsparkles

    Shannonsparkles New Member

    Why can't docs use phone calls or e-mails, or even (gasp) come in and visit me? Don't I count? Am I so sick now that I just don't count?

    Did you know that after $50 worth of treatment for whatever their disease is, cattle are culled, because they are not valuable enough as individuals for continuing treatment? That's what I feel like. It's like, "If you can't come to US, we can't treat you."

    I have Alberta Health Insurance. What am I paying for? Who is going to take care of me?
  5. Loveyame

    Loveyame New Member

    Have you thought about going to the er- I know it cost money but you might be able to talk with a doctor that can help you get home health services. good luck! Love ya me
  6. pawprints

    pawprints New Member

    the CFIDS specialist and have her re-evaluate you. You did make it the appointment, but due to things beyond your control were late. That is no reason for her to drop you. How uncaring can a doctor be/

    I am so sorry you are going through this. Please don't give up. You need someone stronger like your father to be your advocate for you.

    You always sound so intelligent in your e-mails perhaps you could write the physician a letter about what you need.

    We do care what happens to you!
  7. Shannonsparkles

    Shannonsparkles New Member

    I called health link (phone info service) just now. They said to call community care.

    Then I called community care. I told them I had myalgic encephalomyelitis, because I know THAT sounds serrious and they wouldn't know what it was.

    They may be able to have some one help with bathing. Maybe. I'll find out next week. They could not help me with info on doctors who do housecalls or who do appointments over the phone. The lady was rude... She didn't seem to believe me about being told not to exercise and having trouble sitting up.

    I'm woozy from calling so much this morning. CFS doc will still do phone appointmens (which are not good enough - wish she could come to my house - and it's very hard to get in to see her because she's so booked up).

    I'm trying to figure out if there is some way to have a doc come and visit me. Can't type more.
    ((hugs)) Shannon
  8. Scapper

    Scapper New Member

    Uuuuggghhhhh....I know this frustration of being too sick to get where you need to be for help. Please do no give up.

    For now, utilize the people in your life (your father) to get you the proper sleep meds. Either you call the prescribing doctor ASAP or have your father call. They need to address the sleep issue and there is no reason they cannot do that over the phone, given your circumstances. I would not wait on this issue.

    As someone mentioned above, you need to get a home health care provider. Have you checked into this before? There are people who are paid to do this type of work and can make your life easier for you. Being this sick is hard enough.....not being able to bathe or eat properly only spirals us further down.

    I know this catch-22 all too well!! I live with my mother who helps me tremendously with it all.

    Please let us know if you're able to get sufficient help. Maybe some other people on the board who live in Canada can give you some advice on the healthcare system and what protocol you need to go through to make this happen.

    Hang in there!!!!

  9. mezombie

    mezombie Member

    You deserve a lot better! The medical social worker sounds like a good idea. Maybe this MSW could advocate for you, as well as coordinate home health care and other services.

    It's hard to find a doctor who will do phone appointments or e-mails here, as well, never mind house calls. It's ironic that when we are at our sickest, we can't get health care!

    For what it's worth, I've been in your shoes. I know how scary and discouraging it is. I've also been told by a CFIDS specialist not to come back because he couldn't help me (this was after several years of treatment).

    On the bright side, I'm still here! I survived those horrible days and rarely have to cancel a doctor's appointment now. I credit time, rest, pacing, a good multivitamin, some presciptions for symptoms for whatever improvement I've made, esp. time.

    So please hang in there. Things will get better. You do matter, and should not take this doctor's treatment of you personally.
  10. kholmes

    kholmes New Member

    I wouldn't want to go back to the nineteenth century--no antibiotics, no ibuprofen, no vaccines--but AT LEAST DOCTORS MADE HOUSECALLS!

    You made a good-faith effort to make your last appointment on time. Your doctor should be drawn and quartered in the Calgary town square.

    I'm glad you have your dad and brothers to help.

    My thoughts and prayers are with you in getting the help you need.

    [This Message was Edited on 08/25/2006]
  11. 1sweetie

    1sweetie New Member

    First and I will shout it - YOU ARE IMPORTANT!!! YOU MATTER AND WE CARE!

    I wish we could find some of our Canadian friends who would know more about what is available to you. I think I will start a thread asking them to you your thread.

    This is a disgrace and no one deserves to be treated this way. You are a human being with dire medical needs who needs help.

    As someone else stated, I have read your post and they are all well written. Today, please take the time to write your doctor and explain your situation and your needs to him and ask him to call you after he reads the letter. Please convey to him how serious your situation is and how dependent you are on others and that there in not a female to help you.

    I am going to start a thread now to call on Canadians to your aid.


  12. jeduanboneis

    jeduanboneis New Member

    This whole thing brings tears to my eyes and my heart.

    Not being able to take a shower and wash your head is heartbreaking enough.

    I remember being that sick and crawling to the kitchen on my hands and knees to get water. There also was noone to help.

    Just remember that we are with you in spirit and I will offer up my prayers for you that you get some support.

    In my own mind, I don't think I would go back to this guy after this incident. Unless maybe he is the only one that you have to see because of your insurance. If he is, then I would complain to the proper people. That is, when you have a little more strength. All this would make me sicker.

    Please remember that we are always here for you.

  13. Pianowoman

    Pianowoman New Member

    I, too am appalled that this is happening to you. I am in Ontario and health care is a provincial matter. However, we do have CCACs here which may be the equivalent to your community care. They would assess you for any type of home care you need. You are entitled to that so don't let them off the hook. I would also suggest ER or Urgent care if nothing else is happening. We also have walk-in clinics and doctors here that do house calls. It is usually an agency and you can find them in the phone book. I would not be surprised if there is something like that there.

    Have you ever had any affiliation with a Church? Even if you haven't, Churches do have outreach programs and there might be the possibility of getting some of your meals that way, perhaps even more than that.

    Perhaps this will help a little. I can't imagine what you are going through but we need to get you some help. Anybody from Alberta??

  14. kjfms

    kjfms Member

    you really need to get yourself to a hospital you are probably getting dehydrated and malnourished which as I am sure you know can not be good for you given the state of you health.

    Please go to a hospital so you can get the care you need.

    How in the world can you really benefit from a phone exam or whatever it is called. Honey you need some hands on medical care STAT...

    Frankly this is nothing to playing around with if no one will take you then call an ambulance.

    Please consider going to a hospital for help,

  15. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    We do in Ontario, called Medvisit. I've used them when I'm too sick to go in.

    Your situation sounds terrible. I feel horrid if I go 3-4 days w/out bathing, and just feel gloriously greatful and tactilely wonderful when I finally do. You poor little grimey waif.

  16. maps

    maps New Member

    I also am from Ontario and also have a bad GP.

    After two years of illness my insurance company cut me off. I was so sick I could not think or do anything to do and my dr said he could not help!!! cut a long story short I ended up in the hospital pysciatric unit.

    It really is a wonderful place to be when you are desperate. They filled in all the paperwork to get Ontario Disability etc. I was there for three weeks as they would not let me stay at home until everthing was sorted out even though I was coming home everyday for five hours to check on my dog.

    This was three years ago and I still have a social worker who comes every second weeks this one mainly helps me with my paperwork. She also knows her way around the various agency and could provide home help, travel help etc at a very low cost.

    Please go to the emergency and get the help you need. Nothing is as bad as feeling like a none person.

    There is also a new book out by a Dr. Bested here in Toronto I have ordered it even though I go to a Dr Kerr who works closely with Dr Bested.

    Perhaps you could try calling either one to find out if you have a compassionate CFS dr near where you are.

    By the way I mental health has a lot of services and my phsicatrist is excellent and believes in cfs. I also have Dr. Kerr and have changed my GP to one recommended by Dr. Kerr.

    [This Message was Edited on 08/25/2006]
  17. lucky

    lucky New Member

    I am trying to make an appointment with Dr. Bested without success so far. Could you pls. let me know where Dr. Kerr is located and her phone number and if she is a naturalpath or medical doctor.

    Thank you for your reply, Lucky
  18. pepper

    pepper New Member

    If you are too sick to arrange this yourself, ask your dad to find out about it. When I was my sickest I had home care here in Ontario.

    I had a social worker who oversaw the whole thing. She arranged for an occupational therapist who worked with me. A physiotherapist came to the house and helped set up the house so it was best for me. She also taught me some exercises to keep me from getting too badly out of shape when I was bedridden.

    The social worker also arranged for a homemaker who came twice a week to cook meals and put them in the freezer and left the house with a meal on the stove.

    If I had needed help with bathing I would have qualified for several more hours a week from home care but I didn't need that. You do and you should be getting it!

    Alberta's economy is booming so you shouldn't be suffering from the cutbacks that we have experienced here. There must be help out there for you.

    There must be doctors there who do medical home visits. I think if we have them in cash-strapped Ontario, you must have them in Alberta. I hope that your dad can do some research and find these things for you.


  19. springrose22

    springrose22 New Member

    I live in Southeastern B.C. and was a home care nurse until I had to quit due to CFS nearly two years ago.

    You did the right thing in calling Community Care, but the person you spoke should not have been rude to you. They are obliged to send someone out to assess you and your needs. Hopefully, that will happen early next week, and you can get someone to come and help you with bathing on a regular basis.

    But, it sounds to me like you need more care than that for a bit. I.V. therapy for dehydration would probably help you feel better. For that to happen, you need to go to an ER or an Urgent care centre to be seen by a physician. Please do this. Please.

    Were you going to Edmonton to see the CFS specialist? What is her name? Can you please tell me?

    I find it absolutely appalling that she would tell you to stay away until you felt better. I thought we went to Dr.'s when we felt ill, not when we felt better. I am appalled, but not surprised. There are many physicians and specialists, who get their degree, then quit studying and never learn anything new. Sounds to me like she is trying to avoid working. I am sooo mad.

    Can you get your Dad or someone else to take you in to see a Dr.? I seriously think you need extra help right now. What are you taking for sleep? Write back if you can. Love, Marie

    P.S. Get someone to read this if they want. We are all trying to help, but we all agree on some home support, and Go to a clinic very soon to see see a Dr. for dehydration and nourishment.

    [This Message was Edited on 08/25/2006]
  20. kirschbaum26

    kirschbaum26 New Member

    Dear Shannon:

    Either call your doctor's office again and find out what hospital she is affiliated with, or go to the ER, and tell them that you are unable to care for yourself. I am sure that there are programs for people like you. Even Kaiser (here in Southern California) has case workers, and while my mom is not housebound, she is in need of help. I had to take her to the ER and she was admitted for 3 days 2 weeks ago, and upon discharge they requested a caseworker. Within 4 days of discharge, the woman had made the home visit and set my mom up with many different services that she needs, but thought she was unqualified to receive. If you cannot do this yourself, have someone in your family do it.

    Good luck to you...and I sure hope that someone, somewhere, is able to get you pointed in the right direction.

    No one should have to suffer as you obviously are.



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