Dawg Tired

Blackwolf, I'm loking for some red plastic streamers for the handles on my wheelchair - do I need to pick up a pair for you?

I got a dual chamber pacemaker in February 2003. No meds seemed to help so it was the last resort. It will not help your tachy, it will not reduce your arrythmias. It will only keep you out of the valleys from the brady episodes. It has been *NO* help with my NCS but I was in a position where my LTD was going to be cut off if I refused treatment. of course, once I got the pacemaker they cut it off anyway and I am still fighting it but all in all - no, it hasn't helped me. There may be some on here it has helped but I have asked in the past and no one has really replied to me. I still have pain at the surgical site and cannot sleep on my left side. Which, in my case is bad because I slept on my left side for 43 years so now if I get 2-3 hours of sleep a night i'm doing good. Then there is the cost of upkeep - telephone checks every 3 months for the rest of my life plus yearly visits to the EP. When I got the pacemaker I had insurance, then I had Medicaid but Missouri cut out the Medicaid so now all I have is Medicare so the cost is basically out of pocket. $33 each for the phone checks and I haven't yet recieved the bill from the annual visit to the EP - and just what will I be trying to pay if they decided the durn thing has to be replaced?? I am trying to live on $647 a month SSDI. (And that is too much to qualify for Medicaid!) Supposedly it is working 98% of the time - but nobody - even at Vanderbilt - could explain why it had not improved how I feel or my quality of life. I am still just as terribly fatigued, pre-syncopal and fainting just as much as I was.

Patricia, I see and feel where you are coming from. Unfortunately, there are so many differing opinions on weather or not these conditions are passed on genetically that it is difficult to make a blanket statement. I know that hindsight is 20/20 and... If I had known then what I know now I might not have had my now 13-year-old son. He is so far healthy. In my family my mom, my dad and I all have pacemakers due to arrhythmias, both of my sisters are on meds for the same and my oldest sister went to a cardiologist who insists that these conditions are not passed genetically through the family! (what more proof does he need??) Add that to the number of doctors who don't even acknowledge these conditions exist to begin with and where does that put any of us? I worry about the effect my chronic illness has on my son as far as the fact that I can't get out to do things I would like to do with him - is he ashamed of his mom for spending so much time laying on the couch? These are things I leave in God's hands - while I don't wish to get into a theological discussion, suffice to say that if not for a strong faith many of us would not make it from day to day, much less from generation to generation.

My new response to doctors like that... "Yes, anxiety, and YOU are causing it!" I agree you should write a letter to the healthcare system that this so-called "doctor" practices in. There are entirely too many who come up against something they don't understand so they call it the patient's fault. Keep the other appointments! It was finally a pulmonologist who helped me.

What a relief on your funding for Oxford! I had been worried that you wouldn't be able to go! So sorry about your papa. I don't know how healthcare professionals can be so uncaring. If they had simply said there wasn't enough staffing - maybe that wouldn't be as bad as trying to explain themselves... On the other hand; if they would just do their work maybe they wouldn't have to spend as much time explaining??

Yep, the memory loss is part of this for me. I quit driving when I found myself driving in unfamiliar territory the second time. Before I quit work it would be a joke that I would do double duty - I would forget I had already done something so I would do it again! I once woke up and didn't know whaer I was or who was in bed with me - it was hubby but still; i didn't know anything!

There is so much variation in what stage the lawyers will take the cases. In Montana I couldn't get an attorney to talk to us - and they said they wouldn't until just before the hearing stage. We moved to Missouri and had already been through the first denial and hubby's was through the reconsideration. The lawyers here thought we were crazy because we hadn't come in before we filled out the initial paperwork! I had to get a friend of mine who is a nurse to come fill out papers for us - hubby had been disabled for a long time and I had been supporting us so when I got sick we were really in trouble!

Yeah, mostly in leg areas and sometimes my ear canal! But different places at different times. But, I have been told it is all in my head... It is a menopausal thing... It is from anxiety... So, I guess I have just imagined it. Oh just forget I said anything! (PHHHTTT!)

Guess that goes to show we aren't the only ones who fall victim to medical incompetence. Wow - you and she really dodged the bullet! now I hope she takes this reprieve to make the needed adjustments to protect her assets!

Yikes Sophia - I admire you for trying to keep it together. Hubby and I are now trying to find the best way to keep our property from going to Medicaid - we really want my son to have it. Isn't much but at least he wouldn't have rent to pay. Hubby and I are both disabled. I am curious about how things fall out for you legal-wise because this entire issue is SO confusing!

"All 43 year old women have this problem". I wondered how many 43 year old women that doctor knew - I had never me another 43 year old woman with the same problem I have. He sent me to a neuro whose notes I got and they state "patient obviously has an anxiety disorder." God help any of us who become frustrated to the point of crying after being told we are mental!

Dawg Tired??? Hmmm - I guess the fatigue got to me in a major way! Dawg is spelled that way instead of d-o-g because I'm a hillbilly. You know, like one of Jeff Foxworthy's rednecks! (For those of you that don't know - Jeff Foxworthy is a comedian who explains a redneck as a person with a "Glorious lack of sophistication") Yep - I grew up in Arkansas.

Maybe it's the full moon or something - I think for the last two or three days my pain level has really been up there! I use Vicodin (same thing as Lortab). I think, though, that I am starting to get rebound headaches from the acetominophen since I get the same headache from my sinus tablets. Percocet makes me really wired so I know I can't do that. I am having a terribly insomniac night too! YECCH!! Norco was good but my doctor changed me a couple years ago because the vicodin was cheaper. Oh how I miss my masseuse! I'm like Morgan - can't wait to be able to get that personal masseuse. Tried TENS a few years ago, didn't help that much and now there is my pacemaker keeping me from trying it again. I've decided that the pain is just the price of me living another day. Some days it doesn't feel worth it.

I spend 5 minutes day cleaning. Cooking?? EEK! That's what microwave dinners are for!

Coping.. Hmmm... Who said I was? Well, okay, I had quite a pity party for myself for a while - several months in fact! Then I decided I just needed a different definition of "normal"! People who knew the "old me" will just have to take it or leave it! Dismissive doctors? PHHHTTTT!!!! Nothing new there. I, too have the problem of having the feeling that my skin is burning and being told it is in my head. Just think of how big our heads must be to have all these problems - no wonder we have brain fog!

By the time I quit I was either 1) in bed or 2) at work. I was not able to drive myself to work the last 6 weeks or so. My employer had put a recliner in my cubie! My co-workers would find me on the floor... I had no business even being there but they were really trying.

What do I do?? I do medical research!

I certainly understand how you feel. I had to quit work after a 9 month struggle and finally grinding myself down to the point I went in one day and only managed to sit upright for 2 hours. It was to the point I was either in bed or at work and that was all I could manage. I couldn't even manage to come home after work and sit in a chair to eat. The fatigue took over my life. It will be 3 years in September since the last time I set foot in my workplace. I have days of feeling guilty about not being a person who contributes to mankind even though I had worked steadily since I was 14. I am now 46, so I had worked and paid Social Security for 30 years. But I still felt guilty. I am better now since I do a few things at church but it isn't the same. I don't mean to be a downer. My sisters point out that our great grandmother had the same problems I do and she was always just considered to be in "delicate health". That used to be acceptable; for some reason it seems that now society views those things differently. I wish I had an answer; I didn't want to accept my limitations for a long time and my co-workers would find me in a heap on the floor. At least I was working with a group of nurses and once we figured out what was going on they knew what to do. Last summer I decided to "help out humanity" and volunteer to be a nurse for a 5 day summer church camp. I spent the week on the couch. No matter how much denial I want to be in - my body will betray me! So, yes, I do sometimes feel guilty for not being able to work. But I am learning to deal.

My 2 sisters just got back from there last week. What a shock!

Thanks Nina, I have looked for these before and couldn't find them.

I really understand the frustration too well - my next door neighbor has a lady from Senior Services come in once a week. She cleans his house and cooks his breakfast and lunch. He drives, raises a big garden, is always building something and has a part time job. But he is 74 and therefore qualifies for "Senior Services". I can't even find anyone I can pay to come in once or twice a week to clean house. Driving? Gardening? Working? HUH!

Another idea - did you try the social services department at a local hospital? Sometimes they know the "back way" into these things!

Sending {{{{{HUGS}}}}} and best wishes your way!

This is common for me. Add the fact that I get "bedspin"; it feels like the bed has turned into a merry-go-round and then there is the staggering around hanging onto the walls... slurring of my speech sometimes, nausea from the vertigo... yup, i'm acquainted with the drunk feeling. I have NCS

Poohbear, when I worked for a doctor's office we could call any of the home health agencies and request a "social worker consult". You might have to call your doctors office and ask them to do this or you might call the HHC agency and describe your situation. The social worker from the agency would go to the patients home (Medicare paid for this!) and do an interview and from that help apply for all of the help that was available to them as far as homebound assistance, meals on wheels, housekeeping assistance and so forth. I think I would try calling a home health agency and maybe talking on the phone with one of their social workers - they know the ins and outs of everything available in your area.