For the few who have been following my health crap

Discussion in 'Et Cetera, Et Cetera' started by MidwestGal, Aug 1, 2007.

  1. MidwestGal

    MidwestGal Member

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    Here is the latest. I am sending my son to live with my mom for a while until they can figure out what the hell is wrong with me. I'm a broken down mess right now because I haven't been away from him more than 3 days in my life. But really it's the best place for him now.

    My friend found me semi-consious on the floor friday night. I didn't have the energy to stand and walk to my room. I had another vertigo attack and dropped right to the floor. I had just finished giving my son dinner. She came in from work he said mommy can't get up off the floor. I remember her saying to come on and telling her I needed help to get to the bedroom. She got me in here onto the bed took my shoes off and told me not to worry about my son for the night. All I did was sleep and have more episodes of puking all night.

    So, I had my audiology appt today. My hearing is not majorly damaged for as long as I have had the symtoms of Meniere's. But the attacks are happening more than three times a day. Fluctuating hearing, ringing/roaring sounds, sudden dizzy attack then start throwing up and vomiting. Also my ears feel so full like they are going to explode.

    Because my hearing is not damaged as someone who has had this disease for 8 years the resident is not sure he agrees with the diagnosis and wants to take a more conservative route because the treatment options I really have left will add 40-60% additional hearing loss to what I already have.

    I was in the ER about 10 days ago. Waited 10 hours to be seen. Severely dehydrated everytime i moved my head, body, or someone moved my wheelchair I was puking. The ambulance didn't try for a line and nobody seemed to take it seriously at the front desk. I have worked health care for years, I understand life threatening stuff takes precidence. After 8 hours I asked to speak with the nurse manager, they send a patient advocate. She at least took my son for something to eat and a couple of walks.

    Finally I get seen, I got 4 liters of IV fluids. Plus a bunch of zofran which still never completely stopped the vomiting. But I did feel a lot better once I had more fluids. Had a CT scan, I guess it looked normal but they called for a neurology consult. Waited until 3 AM for his ass to get there. Neuro doc thinks it's inner ear related but discharges me several hours later home, limited activities, and to follow up appt in 1-2 weeks. I got a form yesterday stating my appt was for mid November!

    Well, my resident today asked when the neuro consult was. I said I have been leaving messages for days and got no response or no answer. So, he excuses himself and he was on the phone with neurology for over 20 min. Basically, he told them if they don't see me in 2 week or less he will be bringing me up there himself and to the head of the dept. He was very stern with whomever he was speaking to stating that this is an urgent case and he was afraid that what ever is going on will possibly do some permanant damage if it is related to the CNS (central nervous system). He wants Multiple Sclerosis ruled out before treating any possible inner ear stuff with potential to damage my hearing.

    The reason I went to the ER is I had a reaction and horrid headache plus no sense of balance the day I went in. It's either inner ear related or neurological. Really after 8 years of chronic dizziness. I don't care what the diagnosis is. I want answers, not some doc pussy footing around and doing nothing for me. I have tried ever alternative treatment and even had my primary doc do an MRI last year to rule out MS and one other type of brain malformation. It was clean but my symtoms weren't so severe by the time she ordered the test.

    So, I had 15 lab test drawn today or so. I go back for several repeat inner ear tests on Thursday and an MRI of my head and brain stem. I wish he would have done the spine and also a spinal tap. We definately could rule out MS much quicker with those test. A lot of people with MS have leasions in their spines and not always the head. The spinal tap for most with MS would have certain proteins and demylinated cells in the cerebral spinal fluid. I return on next Monday for my results. I'm not real scared of what the results will be even if they are serious. I just want some sort of quality of life back.

    The one thing I do have to say to everyone is keep yourself informed on your own medical conditions. Dr.'s these days are so overloaded with patients they don't always have the time to keep up with the most current info.

    I have worked in the pre-hospital field and in hospitals from the time I was 15. I am not stupid when it comes to medical issues. I know where to look for information and I keep myself informed. I have almost been killed twice by stupid docs that don't read my allergy list. I have 15 drug allergies alone. I have to stay on top of everything! I don't read most of this stuff for fun. I read it so I am educated and can ask appropriate questions. I'm not afraid to challange doctors on their opinions either. My personal primary doc and my old ear doc thought that it was great to have someone so informed and suggested medical school if I can ever work again.

    Example, after I failed everything my ear doc tried for 7 years I found a device that was less invasive than the injections or surgical intervention he wanted to refer me for. It obviously failed but it was worth a try and it didn't cost me any additional hearing and brought another treatment option to his other patients.

    But, keep good records, learn basics about health issues such as how to recognize a stroke or heart attack symtoms because it could save your life or a loved ones.

    Hopefully, when all is said and done I will go back to school, even possibly med school and become a patient advocate for people who just can't communicate with their docs or help deal with the red tape so everyone no matter of race, income level and such get treated with the best care, dignity, respect, and compassion. It is something EVERY patient should be treated with at all times...period!

    I have always been a caregiver at heart. Meaning if a patient says something clinically significant while I was drawing their blood I would track down their nurse or doctor personally and make sure they were aware of it. Even if it meant getting in trouble for spending too much time with a patient. Also, I have had doctors get suspended for the way they treated patients or other staff members. We are suppose to work as a team not against each other!

    Last year, a month before I was taken off work two docs were fighting about drawing labs on a patient before surgery. The surgeon actually told me that I was a cunt faced bitch for stopping him from taking the patient to surgery. I was patient and kind to him. But persistant that the primary wanted these labs before surgery because meds given during surgury would mess up the results. He then proceeded to tell me that if I wanted the blood I better hop on the gurney and draw it while they were taking the patient to surgery and that it was HIS patient. Well this was in front of the whole nursing staff, the patient, patients family, as well as others. I wrote the jerk up and so did every other nurse that heard the conversation. The surgeon was suspended for two months then basically had his cases pulled so he had to go elsewhere for work! But, people like him are the reason I want to change a lot in medicine. It was more about his extra 5 minutes than the care of the patient. What an ass he was, he got what he deserved.

    I honestly when I was well was one of the best phlebotomist in the hospital. I had nurses and doctors ask for me by name to draw difficult patients or find veins for IVs to avoid cut downs on people. Even got called to Neonatal ICU many times and peds icu. I didn't put in the IV's most of the time as it was against policy but on occasion I would. I did it as an EMT for a while.

    I guess the real reason I am posting this is know about your conditions, stay on your toes and question your doctor, get a second opinion if need be and do not let them treat you like your just another number. A lot of these people go numb after years of patient care. Remind them they are human too.

    But also let experienced people do their jobs. Most dont mind some suggestions such as this vein is the best but don't just say you only get one stick and such you just make the person nervous. Really, if your requesting certain equipment, like a butterfly needle, the person behind the needle was using it as a crutch for their inadequite skills! Those stupid needles are about $2.50 a piece! Really a straight needle and a syringe would get the same result unless they need more than can go in the syringe or have special testing. Believe me, the phlebotomist would rather stick you the least. I always tried to save patients multiple sticks out of courtesy. As I have been a patient myself so many times and have endured more than 40+ sticks just for an IV. A professional knows their job well and should act that way.

    Okay off the soap box, if anyone has extra positive thoughts I sure could use them right now to make it through the next few days. Having my son leave is one of the hardest decisions I have ever had to make. He's 5 and knows way more medical knowledge than most junior high kids. I just want to find out what is causing this dizziness and find a solution so I can be independant again.

    Kim
     
  2. ManlyBanisters

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    thatgal - I have not posted with you before - but I have read your posts and I feel for you. You are in a tough, tough place.

    You are doing the right thing for your son. Do not doubt that - You sound like an amazing mother and I think you are so very brave.

    Please let me assure you of something - your bond with your son will not suffer. I have had to spend time away from my family, as has my husband. Kids are surprisingly strong and resolute - his love for you will not falter. If anything it will grow stronger when you are back together as you will be all the more precious to eachother. Talk to him on the phone as much as you can is my only advice.

    I hope and pray that everything works out for you, that things become clearer and that you can get back to the best health possible in the shortest time. Good luck, stay strong.
     
  3. Love-it

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    You might want to look into this as a possible help. My wife and I went to be checked out and there was a mention that if the first vertebra, C1, at the top of the spine, also called the atlas, is out of adjustment it puts pressure on the spinal cord which at that high level can relate to migraines, TMJ, neck and back pain, herniated discs, scoliosis and may affect things like vertigo, fibromyalgia, there can be emotional release from built up stresses, etc.

    They use a procedure that usually realigns the atlas in one treatment.

    Sites:
    The Method

    http://www.consciousmedianetwork.com/members/mhane.htm

    http://www.atlasprofilax.ch/eng/index.php


    My atlas was nearly correct and he adjusted me for free, just a few minutes of assessment and procedure. I experienced some positive changes in my shoulder from a fall I took last winter.

    My wife was in a bicycle versus car accident nearly 40 years ago, with some fairly serious trauma, her atlas was significantly out of kilter. I have seen a remarkable change in her in just the last few days, she is more relaxed, is sleeping more soundly, more positive, yoga is easier for her, she is handling stresses at work better than she ever has and is proud of it.

    According to Michael Hane who did the procedure it can take a month or more to experience all of the changes.

    There is one other thing that I would like to leave with you, if you are open to new ways of thinking about pain, Dr. Sarno, look up his books on Amazon. My wife and others that I know have benefited from his writings. Briefly: if you hit your thumb with a hammer it hurts like hell but if you move on with the work, stay busy, you can ignore the pain and carry on working; but if you choose to focus on your thumb it will start hurting like hell again. My wife doesn't like the way I describe it: telling myself that whatever is causing my leg to hurt doesn't have to make my leg hurt. I can't really tell you how she describes it because it doesn't resonate at all with the way I think. She has read his book I think 5 times now and she says she gets something new out of it every time.

    Good luck to you.
     
  4. MidwestGal

    MidwestGal Member

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    thank you, I appreciate your kind words and thoughts. My son and I are very close now.
     
  5. D_Humper E Bogart

    D_Humper E Bogart New Member

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    I must have said this before in a PM! But it seems you're taking care of yourself and good luck with everything! I've always wanted to try phlebotomy, although I may be too clumsy.. :(
     
  6. DGirl

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    I hope you get better soon.
    HANG in their.
     
  7. MidwestGal

    MidwestGal Member

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    Thanks for the info. I have thought about trying a chiropractor. One of the conditions I am suspicious of is called arnold chiari malfomation. Basically the tonsils of the brain move down and are pinched in the vertebrae causing several different kinds of problems with balance, hearing, loss of feeling, weakness and such.

    I will look into your suggestion though. Thanks
     
  8. MidwestGal

    MidwestGal Member

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    thanks, if you want to try phlebotomy most community colleges offer courses. Whether getting certified or not depends on the company and state you live in. I found it very rewarding because I love talking to new people. I didn't like actually sticking them but 98% of my patients said they never felt the needle, this is including arterial sticks.

    If you go for it, I will always be happy to give you some pointers.
     
  9. monstro

    monstro New Member

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    All my best wishes to you and your son, Thatgal. Definitely sending positive thoughts your way
     
  10. MidwestGal

    MidwestGal Member

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    thanks monstro, I am having a hard time hold it together while he is in the room with me this morning. But I have to do what is best for him.
     
  11. DC_DEEP

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    TG, I'm sending a little love your way.

    I've had the experiences with bad docs and good ones, too, so I know (in a way) what you are going through.

    Thank you for sharing your experiences with us, and especially for demanding that we all take some responsibility for our own health and health care. It's so important. Even the best doctor needs a good patient to be a great doctor. One of the points I try to make, often, in threads on LPSG is: be an informed consumer, even with health care, and never ever be "embarrassed" to be totally honest with your doctor. He can't treat you properly if you are withholding information.

    Best of luck, Kim.
     
  12. arliss

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    sorry to hear about your troubles...i wish you the best...
     
  13. SpoiledPrincess

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    At the moment you're not well enough to care for yourself and your son so you're sending him off to your mum who obviously did a great job with you so she'll do the same job with him :) Hope you're well enough to have him back soon but he'll love the time at his grandmothers so don't worry too much about him, you need your energy to take care of yourself.
     
  14. Dave NoCal

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    Has Lyme diesase been ruled out? Vertigo was one of my symptoms. However, it was never as severe as yours.
     
  15. B_Think_Kink

    B_Think_Kink New Member

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    Good lucky girly, I hope you can get this worked out. Keep fighting and you will get what you want. Good luck with everything, and keep up posted.
     
  16. Principessa

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    We IM'd briefly last night and I know you are doing the right thing for you and your son. Since we share this wretched diagnosis of Meniere's Disease I totally understand what you are going through though mine is mild in comparison to yours.

    You know you are constantly in my thoughts and prayers. You inspire and encourage me with your knowledge and tenacity in dealing with this invisible disease. I'd fly out to help you but I'd probably have a vertigo attack trying to do so. :redface: :mad:
     
  17. viking1

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    Good luck! Get well soon.
     
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