Homebound Chat #2

Discussion in 'Homebound/Bedbound' started by gb66, Jan 31, 2015.

  1. gb66

    gb66 Well-Known Member

    This is the next board for our Homebound Chat posts. The Homebound Chat #1 board was started last year. It is a great place to post anything that's on your mind.

    Feel free to share, ask for or give help, or just to rant if you're going through a rough time. GB :)
  2. rockgor

    rockgor Well-Known Member

    Hi Folks

    Yesterday we had a light drizzle in the morning and a fierce rain storm
    in the afternoon. We even had thunder and lightning which is
    unusual here in Los Angeles. And we almost never have a rainbow.
    Back in Minnesota we usually had a rainbow. Frequently a double
    rainbow.

    I smashed my thumbnail the other day when I engaged in a dangerous
    maneuver. I attempted to put something on top of the dresser. I've
    gotten so clumsy in the last decade. Anyhoo my hand rammed into
    the dresser; broke a nail; started bleeding. Uff-da!

    Two years ago I fell getting outta bed. Broke my nose. Was in the
    emergency room for two hours. Had to have a few stitches put
    in. Ya know what? No anesthetic. But I was brave. Just bit on
    a bullet till the tailor was through sewing. Actually, he wasn't a
    tailor. He was an ophthalmologist.

    The bill was almost $4000. My insurance paid most of it. I ignored the
    bills for what wasn't paid.

    I'm not up to doing a rant, GB, but I intend to file a complaint about
    the multiple ailments most of us have. I'm going to take care of that
    as soon as I found out where to send it.

    Saw a T shirt that said "JEET-YET". Maybe it's the condensed version
    of "Did you eat yet?" But even if it is, where's the humor? Reminds
    me of a riddle my nephew posed about 30 years ago when he was a kid.
    "I got a potato clock." That was the answer. What was the question?

    Well, the handyman was going to come and rebuild the chicken coop
    today. Maybe it's too wet. He has to pour concrete and what not. The
    chicken coop never had chickens in it. It was just a wood frame the
    size of a small shed with shade clothe on top to protect some of Gordon's
    orchids from full sunshine. After 30-40 years it needed replacement.

    Oh yeah, The answer to the riddle is" What time did you get up this
    morning."

    Hugs
    Rock
  3. gb66

    gb66 Well-Known Member

    Rock, Maybe you could send the complaints to the AMA and the CDC! They could do a "little bit" more for CFS sufferers. As in "anything at all". So far, not a whole lot has changed. GB
  4. Darrae

    Darrae Member

    Hi GB, Laura, Rock, Barry, Diane, anybody else popping in!

    I didn't realize we had started a new thread. So I copied the second half of my post from a few minutes ago to the latter half of this new thread. (This is going to be long winded.........get comfy folks).


    Rock, so sorry to hear about the encounter with your dresser! Ouchie! (I'd suggest biting it back, but I fear the consequences would be more dire than the satisfaction factor).

    I agree! One should not have to endure more than one lousy condition at a time! I'd be willing to begin a petition. The million dollar question is.........who gets to receive it? And no, not nearly enough research is being done. I feel like an orphan compared to "Jerry's kids". LOL


    I found it rather scary a while back when I was "surfing" the net and came across a website that showed pictures of brain scans that compare the shrinkage in the brains of FM sufferers to those of people who have Alzheimers.

    I mean, I know that many of our conditions have some symptoms with many similarities. Short term memory loss, brain fog, trouble with cognitive thinking, balance issues, and that sort of thing. The site was very informative though. Low thyroids seem to be a connecting factor in almost all the auto-immune conditions many of us deal with.


    It also cited head concussions as a contributing factor. I thought, "Jeez"! "I've had multiple head concussions in my lifetime and at least 3 were major"! The article cited many other "connected" or suspected issues. I wish I could remember the name of the site. It was quite informative. So much for memory issues. What a bummer. :rolleyes:

    My daughter's diabetes[​IMG]
    is not type 1. Her diabetes[​IMG] is the result[​IMG] of chemotherapy killing off her pancreas. Her pancreas attempts to work off and on and sometimes cycles through a single day. They say it's not type two either. Her doctor told her it's like 1.5, if that makes any sense at all. She described it as a combination of the two.

    Either way, it's life-threatening. We have an advocate fighting Medicaid now for help. Medicaid denied her the insulin pump[​IMG]
    the first time. The advocate we found for her with the state told her that "legally" if you've had a life-threatening condition for over 12 months they can't deny you. Her advocate is now receiving all her hospital, EMT, doctor and ER records to go after them. Meanwhile, we just keep trying to be ever vigilant and keep her alive. The EMT's were here at 3:00 this morning and around 4:00 yesterday morning to bring her back.

    She has a new SSI attorney who is very "snarky" about all this and is bent on getting her SSI approved[​IMG]
    . She went for an assessment with a doctor last week, (which she failed miserably), so this is going to go a long way toward making her case. Her cognitive level has dropped significantly and she is now blind in her left eye except for light and shadow, (Due to diabetic neuropathy in the eye). She can still see out of her right eye ok.

    I think this is hardest on my son. Outwardly, he doesn't show his emotions much. But inside he is exceptionally sensitive, intuitive and nurturing. She is the sibling he feels closest to and loves with all his heart. He's the one that needs the hernia surgery. We're waiting until he loses another 54 lbs.. Then the surgeon feels he will be ready for the operation. He sets his alarm and gets up with her through the night much more than I can due to my necessity to sleep so I can work.

    I watch over her until around 11:00 p.m., then I am up at 4:30 or 5:00 to check[​IMG]
    her again so he can get a modicum of sleep. Once she's up for the day, he continues[​IMG] to watch over her while I work. On weekends, I sleep most of Saturday. It's my only day to rest.

    Usually, when she has an episode, he wakes me so we can both handle her until the EMTs get here. They were here at 4:30 a.m. yesterday and 3:00 a.m. this morning and he didn't wake me today. I asked him, "Why didn't you wake me so I could handle it and you could go back to bed and get some sleep"? He said, "Because it's your day off Mom". I told him that he needs to sleep too. I could have handled it. He said, "I had it covered Mom, no need to wake you up".

    I don't think a person could have two more loving children than these two. My other two are good kids, but much different. More self-absorbed. Less family oriented than the two I have here with me. And I say, no vanity intended, that these two are most like their mother in every way. Darkly funny, quiet, artistic, musical, sensitive and very intuitive[​IMG]
    . If I had to have two of the four to need to live with me it's best it's these two. Though I'd give anything for both of them to be healthy, happy and be able to live normal lives.

    Some days it's so heart wrenching. I don't cry easily. This morning, however, while I was talking with my daughter, I broke down. For her brother and his selfless care. After we'd all had a bit of breakfast I told him to go stretch out in my big bed and sleep. I'd watch her the rest of the day. She feels bad about being the reason no one is sleeping. I told her that we can sleep when we're dead. But, we cannot sleep and lose her. She's not replaceable and not to ever feel she's a burden. We love her and cannot do without her. She must live.

    Yes, this is hard. But losing her would be harder. She is such a wonderful girl. Beautiful[​IMG]
    girl. Loving girl. I cannot imagine life without her. Her brother told me the other day that since he's been home with me and his sister, it's the most loved he's felt since he moved away from home 3 years ago with his girlfriend and they had their son. The girlfriend was quite horrible and downright mean to him. She took full advantage of his sweet, laid back nature. He misses his son. He only gets to see him maybe once a month. But he definitely does not miss the girlfriend.

    Diane,

    I hope you get over this awful flu asap. Our state, I heard on the news the other day, is the 9th worst in the country. We have a lot of it here. It's been going through the facility now for a while. My hands look like lizards from all the hand washing and sanitizers. Awful this flu is! I pray you are well soon.

    GB,

    I'm glad to have a little time to post here. I've missed this. I've missed all of you. I've just been on total "overload". I am glad you've felt up to posting again! I know this post has been sort of long winded. I've been incommunicado for a while with all that's going on. Sorry if I'm a little "whiny" right now. This has been a very long haul. With the prospect of trying to get everything to gel before March and worrying about getting it all done in time, the health issues here, lack of rest and the overload at work, I've not been too great. My body is reacting quite violently. The RA has now found my hands and is beginning to show in painful knots on my thumb knuckle. At first, I didn't know what it was. Then Doc told me when I went in for my adjustment a couple weeks ago. The rest of me is feeling it too. Like the Fibro isn't enough!

    On the "up" side, I will MAKE this happen! I will get through it. I will get my children through it. Then, there is a light at the end of my tunnel. My workload will be much easier, my house payment will be lower, my son will get healthy again, my daughter will get the help she desperately needs, and I will be able to take better care of myself. It's just going to take a while that's all.

    I need to go. Thanks one and all for the warm welcome back. My prayers go out to each and all that you feel as good as you are able, that your cares are small and prayers answered[​IMG].

    Big hugs,

    Dar
  5. Alyssa-Admin

    Alyssa-Admin Active Member

    Hi there, I am the new admin on her Dar, and I look forward to chatting with you in the future. It sounds like you sure have a lot on your plate. On top of the lack of sleep and everything else, you must be so stressed out. It sounds like you have wonderful children, unfortunately, 2 of which are not doing great right now. At least, at the very, very least, they are welcome home and for your daughter especially. It's amazing how stress can increase our pain, fatigue etc. You are doing all you can - and you know that. Fingers crossed that your daughter gets the medical help and support (for her and you and our son) that you desperately need. Sending a hug. A.x
  6. Darrae

    Darrae Member

    Hi Alyssa,

    Thank you for your support, kind words and hug. :)
    Alyssa-Admin likes this.
  7. Alyssa-Admin

    Alyssa-Admin Active Member

    Hi there! I have a gastric lapband...how are you doing with your surgery? I have had mine for 8 years....and I am getting it loosened. I can hardly eat any protein a lot of the time, and currently am surviving on supplements and protein shakes.

    How are you doing today? How are your kids? Sending a big hug to you. I know that the saying goes, 'God wouldn't give you what you aren't able to handle'....but that doesn't make it any easier when you are struggling yourself so much. Sounds like you need some respite...is there anywhere that you can go? (I know in the UK there are places that are little get aways for carers...). Obviously, I don't know how the system works there...but here in a situation like what you are in, is that there would be social care in regards to a homeworker, coming in a few times a week just to give you a break...just to be able to sleep, do something for yourself... and know that your daughter is in good hands. Just a thought. But I am sure you have looked well into all the options available for you.

    A.x
  8. rockgor

    rockgor Well-Known Member

    Hi Kids

    Good idea, GB. I will direct my complaint about multiple medical problems
    to the AMA and CDC. I guess that would be the American Muskmelon
    Association. I told Gordon of my plan and he said, "Oh Honey, do."

    Not sure about the CDC. California Dairy Council Maybe. I'll point out
    the medical industry has milked enough moola outta us guys already.

    Dar, I hadn't thought of biting the wicked dresser. You're probably right,
    though. I wooden wanna get a mouthful of splinters.

    Alyssa, I looked up your name. Read it is derived from the alyssum flower.
    My mother had a big garden; both flowers and vegetables. She used
    alyssum for a border. They were small flowers with purple and white
    blossoms. I couldn't find a picture that I could copy. I did find
    this one, but it doesn't look the same. This was on a page of Minnesota
    wild flowers. Never saw it when I lived there.


    : [​IMG] [​IMG]
    [​IMG]

    Hugs
    Rock
  9. gb66

    gb66 Well-Known Member

    Funny Rock, :). But seriously, I think that someone may have dropped the ball a few years ago with funding for CFS reasearch from what I've read on other boards.

    I think with more funding we could have at least had a method by now for testing to detect CFS. I would like to have a doctor that acknowledges my disease.

    In 36 years of seeking medical help I've only had two doctors to talk about CFS. One quit his practice because CFS patients were too time consuming , and the other was a hospitalist who examined me when I was in the ER a couple of years ago.

    I feel invisible sometimes and always feel that I need to explain and apologize for having an 'unknown' illness. My docs just look at me like I'm speaking another language. :) GB
  10. Alyssa-Admin

    Alyssa-Admin Active Member

    Hi everyone, GB, that is not good that you don't have a doctor on your side!!! What about a functional medicine doctor - someone a bit different?

    My husband owns Bodymap Apps, and we have just done an app for LDN...my hope is to get some labs/researchers interested in carrying out further studies on CFS, by using the app for at least part of the study. People could crowd source fund...I know that Rich Carson from ProHealth has really made a big difference in regards to CFS being acknowledged. But you know how it is...when there is no blood test, no investigations that show up much of anything...it's a hard one.

    All I can say you to (even thought 36 years is a long time), to keep looking for a doctor....I see on the forum there is a spot where people can post of their doctors that are really making a difference for them. To have a compassionate doctor....it is critical!

    My friend and I wrote a self help book for parents and carers who have an invisible illness....it is hard enough getting an adult to understand...let alone a 5 year old.

    Rock - that is really cool about the flower....my grandmother used to have sweet alyssum in her garden. I am not quite sure where my name came from...I was named partially after my great grandmother - Anne...so where Alyssa came from, I have no idea (but a good question to ask my mother when I speak with her next!!!).

    A.x
  11. Alyssa-Admin

    Alyssa-Admin Active Member

    ...another thought for you GB...what about looking out for a local support group? I know when I set one up in the area we live in, it was amazing how many people showed up! The great thing was we were able to share about our experiences with our doctors, which ones are good, which ones think you are crazy...you know what I mean. For myself, I have decided that I have pretty much have had enough with doctors. I got really screwed around with the NHS here in regards to my neck. To the point that they refused to investigate (MRI) because it was 'just your fibro'. Wrong. I went private and got an MRI...And now I know exactly for sure that it ain't fibro that is going on in there...

    So, with the use of my FibroMapp App (my hubby is also doing one for ProHealth which will hopefully be released shortly). I have been able to figure out exactly what meds work and which ones don't. And most of them - other than my anti depressent do diddly squat. So. Enough with doctors!!!!

    This year, I am taking control of my body and my health. I am using supplements to help me with energy and sleep ...and even pain. (Things like being deficient in B12 and magnesium can make a huge difference in your life....google magnesium deficiency...for many of us, it reads like our condition!)

    Right. off to do some stuff!

    A.x
  12. Darrae

    Darrae Member

    Hi all,

    Alyssa,

    Thank you for the idea. We have an advocate working on getting my dd the medical device she needs, (an insulin pump[​IMG]), and an SSI attorney fighting for her. Until Medicaid acknowledges her needs, help is not forthcoming. As for a respite for myself, well.........I work 40 hours a week at a supportive living facility, Sundays doing home care for The Department of Human Services, and am in the process of trying to get my credit reports updated due to a mortgage company that refuses to report my 16 years worth of house payments, my taxes done, my home refinanced, and once that's done.........refinance my home so I can go full time with the State job and get out of my overwhelming job at the facility. I just can't do it anymore.

    I'm trying to accomplish this all by March 1st. I've received and sent to the credit reporting[​IMG] agencies my payment history. So that's done. I've got to reschedule my tax appointment due to my son waiting on a new copy of his SS card which he lost so I can claim him. This threw a bit of a cog in the works.

    Once my taxes are done and in I can begin the refi on the house and lower my payments considerably. Then I will be able to afford the new health insurance that I will have to pay for on March 1st. My return should only be 10 working days from date of file. In the meantime, what I make working for my Sunday job is just "gravy" so I will be able to make the first premium payment.

    Many do not understand how I manage with all the ailments I have. It's simple........I run on adrenalin, intestinal fortitude, and lots of pain. But once this is all accomplished, I will be able to slow down and give my two weeks notice at the facility and go full time at the other job. The job I'm going to will be much easier on my body and mind. I will also be able to get the much needed "rest" time I desparately need. I just need to hold on a little bit longer. I'll make it.

    Rock,

    Your humor is infectious! You never cease to brighten my day with your "punny" posts. Have to run now.

    Hugs

    Dar
  13. gb66

    gb66 Well-Known Member

    Alyssa, I am not able to attend a group meeting. I'm too ill and in too much pain to go anywhere. I have difficulty going to my medical appointments and it's getting worse with time.

    I am in a wheelchair when leaving the house also. We have searched every doctor in the area, there are no CFS or Lyme doctors around here. I have always wanted testing for Lyme Disease but haven't found a doctor to do it.

    My energy ran out years ago but my main problems are the fibro pain, IBS, MCS, pelvic prolapse (not able to have surgery), and all the neurological stuff (vertigo, migraines, ocular miraines, tremors) and lots of infections.

    In addition, I am type 2 diabetic and have high bp and low thyroid, but those are under control. Self help only goes so far after all of these years. I get weaker as I grown older. I am 74. Thanks for your input and yours too Dar. GB
    Last edited: Feb 6, 2015
  14. Alyssa-Admin

    Alyssa-Admin Active Member

    Big sigh. I'm so sorry you're going through this. So very sorry you're going through this. My friend is in Holland and has been diagnosed with Lyme... And it sounds like the government really is not interested. However.... Have you investigated LDN? Have a look on www.ldnresearch.com


    People are going into remission with MS, Lyme... Or at least have had good experiences and regaining a better quality of life.

    Also...ProHealth are also expanding into products for a whole section on Lyme... With supportive supplements.

    At the very, very least there's the Internet, and contact with the outer world... But I can appreciate being home and bed bound.

    Please do check into LDN? There are interviews with people on Vimeo.... LDN is treating 174 different conditions. And there's a list of doctors who prescribe it. I met with the compounding chemist from the UK said it's 'as safe as aspirin'.

    Have a looksee if you haven't already.
  15. Alyssa-Admin

    Alyssa-Admin Active Member

    Hats off to you Dar...All I can say is 'Wow' you are one incredible woman. Hang in there....sounds like things should hopefully start to get a bit better for you soon.

    A.x
  16. gb66

    gb66 Well-Known Member

    Alyssa, I have checked out LLD's and there are none in my area. The last doctor I had did a test for a tick borne infection that he said could be found in our area, but it came out negative. I wanted the full Lyme panel but he said there was no Lyme in this part of the country. I've read otherwise but he's the doctor.

    I've been to dozens of different doctors over the years. general practitioners, rheumatoligst, neurologist, and they find that I have FM, MCS, IBS, osteoarthritis, degenerative spine disease, mild scoliosis, tremors, small brain cyst, as well as the others I listed, but they have no explanation for what happened to me in 1978 that was the start of all of this. It was a sudden viral-like onset that wrecked my central nervous system and left me very sick and disabled. I had almost every symptom of CFS/ME that is listed. The Canadian criteria for myalgic encephalomyelitis or (encephalopathy) perfectly describes my experience, but I cannot find a doctor who understands this condition (other that the ER doctor who is not in private practice). It's not because I haven't looked everywhere, online, in my city, in my state etc.

    I wanted to add that I'm not bedbound, just homebound. I'm up about 8 to 10 hours a day. I'm still able to do a little cooking and take care of my personal needs. Hubby does all the shopping and most housework now. It wasn't always this way. There was a time after I got sick that I was able to go to college, work part-time, shop, go out to dinner, visit with family and all the things that a lot of folks on here are still able to do. It's just that with time, I have gradually gotten sicker in spite of regular medical care. GB
    Last edited: Feb 6, 2015
  17. Alyssa-Admin

    Alyssa-Admin Active Member

    GB....thank you for updating me with your history. I find that so many people (perhaps moreso in the UK) just feel that the doctor they have been handed is their doctor for life - whether they are happy with them or not and they just stick with them.

    That is indeed very bizarre in regards to 1978, for sure. I take it that looking at a naturopath or functional medicine doctor has been explored long ago as well.

    For myself, it looks like we are going to be travelling down to London for a 20 minute appointment and a 1 min adjustment from someone very experienced in Atlas realignment for my neck. The cost of the appointment £80 the cost of getting there, staying over night and returning...and food, etc....We are looking at a £500 expense (around $800). So it's not happening anytime soon.

    Have you had a look at LDN yet?

    A.x
  18. gb66

    gb66 Well-Known Member

    Hi Alyssa, Thanks for getting back to me. I have looked at the LDN many times over the years. We have a member on the boards that is an advocate for Lyme Disease, she has it and was undiagnosed for many years. She has been very helpful to me but I just can't find a doctor to do the testing. We have no naturopaths either.

    Have you had a chance to read some of the older threads on the Homebound Board? We have played a lot of games and had a really good time with them. Please join in anytime! There is also a thread that has some introductions. I will try to find it and bump it back up to the top.

    I wanted to add that CFS and Lyme have many of the same symptoms so it's really difficult to know which one it is. The Lyme tests are iffy so it makes it more confusing. Do you have CFS or FM or both? GB
    Last edited: Feb 6, 2015
  19. Alyssa-Admin

    Alyssa-Admin Active Member

    Yep, I hear you about Lyme. My friend in Holland had to go to Germany to her her test done. And now it's to find a doctor to treat it.

    Horrible disease, and according to my friend the government are not interested in any of it. I might have misunderstood what she was saying to me... Something like there may be many people diagnose with MS (I think it was MS?) when it was Lyme all along. She believes here came through a blood transfusion vs a bite.

    I'm planning on introducing a few new things as are Prohealth. Did you know that they are gearing up to release a whole new product line and probably forum for Lyme? That should be happening anytime now.

    So frustrating when you know you're not right... But nobody is there to do anything.

    I know that the place in Germany who tests get blood samples from people all over the world to get their Do. But this is a lab and not a doctor... So no follow up protocol.

    Right. Husband snoring. Wrenched my back doing yogalates last night. It's already 1pm and we're still in bed!
  20. Alyssa-Admin

    Alyssa-Admin Active Member

    Ps. If it was me I'd just start on the LDN... Considering it's also for FM and CFS as well. And it is being used to treat Lyme as well. Just a thought.