Has all the makings of a good novel; healthcare mega-systems too big to fail; mystery, irony, love, hate, sadness, fear, and betrayal... but truth is stranger than fiction!
You can read it here; Memoirs of a Strong Woman
Showing posts with label healthcare. Show all posts
Showing posts with label healthcare. Show all posts
Thursday, January 14, 2016
New WordPress Blog About Patient's Rights; Memoirs of a Strong Woman
Has all the makings of a good novel; healthcare mega-systems too big to fail; mystery, irony, love, hate, sadness, fear, and betrayal... but truth is stranger than fiction!
You can read it here; Memoirs of a Strong Woman
Saturday, October 24, 2015
Update on Health of The Artist
It has been an exhausting few months and the weakness has now spread to my arms. Things are moving at a snail's pace as far as medical testing is concerned. Emory seems like a huge machine that just swallows up the patient and it's too easy for one to get lost in the shuffle. Other than the occasional doctor's appointment I've largely been dealing with this alone. If it weren't for my animals I don't think I would be taking it as well as I have been. They continue to be the one constant in my life regardless of what curve-balls come along. They don't care how much money I have, or assess my value based on whether I can drive, or whether I can walk. They love me unconditionally and for that I'm truly thankful. Even so, I am beginning to have more and more difficulty just doing simple things like carrying items to and from the kitchen and I know I'm going to need some human help at home soon.
I'm finding out that there are things I need in order to cope that are not covered by Medicare and Medicaid, and my appeal for Medicare to cover my Benicar is still hanging in the air. Expenses are piling up and ever since all the new changes in Google and Etsy's algorithms both my shops have not been getting enough targeted traffic to bring in the sales necessary to meet my living expenses.
My appointment with the neurologist a few weeks ago was rather anticlimactic. I had chosen her especially because I believed she had the ability to really help me and go the distance, and I still have no doubt that she could, but after doing an exam which included alot of testing of reflexes and muscle strength, and taking a detailed history I guess she determined that this was going to be too big a job for her and set about running the other way just as fast as she could. She made a point of telling me her main interest is in Idiopathic Hypersomnia and that she is "this sleep person" as she put it kind of coyly, a rather poor excuse for passing the buck to some other doctor since I'd waited a total of about 5 months now just to see her in hopes she could kick things into high gear now that I was sitting in her office. It's a shame because the stuff she's published on movement disorders would make her perfect for my situation, as she also understands how sleep abnormalities are a clue to something deeper going on in the brain, something that not all neurologists are astute enough to recognize.
I had obtained a Lyme Disease testing kit from IgeneX, the most highly recommended private lab with the most accurate test methods but when I asked her to order the blood drawn for it that day she asked why my GP couldn't do it. I had asked him just a week or so earlier and his response was that he didn't believe in chronic Lyme disease and at that time was unwilling to do testing with a lab outside Emory even though Emory's lab (like most others in this country) did very limited Lyme testing and would most likely come up with a false negative (ruling it out when in fact I may very well have it and it may be what's attacking my brain so aggressively having festered since I was 6 years old).
The neurologist also noted that my diastolic blood pressure was high and had been on a few other occasions in appointments I had with several other Emory doctors (all the records are now housed electronically). She questioned rather accusatorily why my GP had not treated it, to which I answered that he was probably waiting for her to troubleshoot the underlying condition. And so it went from there, one deflection after another, my being the veritable hot potato she was desperately trying to pass off like some slimy football to any other doctor but her.
She went on to state that since I was seeing this pulmonologist I should keep seeing him (which I already know, since it looks like the Biot's breathing is not going to be going away, and my breathing is likely only to get worse over time). It was her demeanor of utter almost dramatic avoidance that began to irritate me; this attempt to make it abundantly clear that she was relinquishing all responsibility for my care that was so incredibly crass in the face of my gradually losing all my muscle strength and control of my body. I tried not to let her know it bothered me but there was no way it couldn't if I had any feelings. Honestly I hope she reads this and is ashamed of herself. How insensitive could somebody be?
To her credit, before bowing out she did prescribe Keppra, an anticonvulsant medication which has helped the jerking I have at night, and she ruled out Myasthenia Gravis with two blood tests, and discovered I have some bulging discs in my cervical spine by doing an MRI, but stated in her notes that those are not severe enough to be causing my symptoms. It seems that was just an incidental finding. Her suggestion was to refer me to General Neurology at Emory (which she says is really backed up and has a long wait). She is outside the country now but when I spoke with one of her nurses just the other day on the phone it occurred to me that going that route might not be wise since it is likely they'd have to refer me to an even more specialized Neuromuscular clinic (which would also most likely be backed up for several months at the minimum). We are behind the 8 ball, so it makes more sense just to cut to the chase.
Each time I see a new neurologist they have to do all that pounding, pushing, and pulling on my muscles all over again to see for themselves (and my right forearm near the elbow is still recovering, as the day I saw her I'd already pulled a muscle just brushing my hair). I returned home that night literally feeling like I had been in a physical fight! She did not look it but was much stronger than my pulmonologist when he had pressed on my left leg the last time I was in his office. All this is very hard on my poor over-strained muscles which work hard just to hold a drinking glass or stand up in the kitchen or bathroom.
This business of doing two tests every few months at this stage of the game just isn't going to cut it. They are going to have to move faster than that if I am to retain as much function as possible. I don't have a caregiver and if I lose much more function I don't know how I will do things around the house without necessary modifications in place. Medical people are always touting "early detection" for everything, so to drag this out after it's been percolating about a year already would be irresponsible. I know what's ahead and I'd rather just get it over with so that I can go on to treating this with every tool available and have access to all the services I'm going to need so that I can have some kind of quality of life and continue to live in my home.
On average it can take Medicare 6-7 months to approve new medical devices/equipment, and I can already tell that this power wheelchair is not going to be sufficient for long. My neck is starting to weaken and there's no headrest on it. It's a Hoveround which gives it a good turning radius, but it's very short from back to front, there's no way to evenly distribute my weight or elevate my legs, and it's murder to do grocery shopping with only a footrest to carry things on.
My GP has already had to prescribe Tizanidine for spasticity and putting all the weight on my butt tends to trigger it even despite the medication. Any straining or holding myself upright for very long triggers it, so now I don't go anywhere further than my mailbox except when I absolutely have to. I've been trying to find places where I can order food online but that is extremely limited especially for anything fresh like fruits, vegetables, or dairy. Almost none of the farm co-ops deliver in my area and the ones that do want to take your money and give you random items without your choosing what you want to order. Schwan's Home Service doesn't have a delivery route in my area so they rely on UPS (the worst possible company) to deliver for a whopping $15.00 delivery charge). I told the representative of Schwan's that for that much money I can order from India and don't have the kind of income to do that each time I need food! Totally ridiculous!
I did some more researching online and found quite a bit of papers now published and listed on PubMed about a link between Lyme Disease and Motor n=Neuron and other Neurodegenerative Disease symptoms, so I sent it to my GP, explaining that at least if this turns out to have been caused by Lyme or its co-infections there's a chance we might be able to prevent it from destroying everything by treating it more aggressively with antibiotics. The window may be closing on that soon so we better get a move on. I guess he saw my point, so he decided to go ahead and order the testing through IgeneX and I have another appointment on Tuesday, October 27th to see him and get the blood drawn. It's a crap-shoot as to whether Medicare will cover it but IgeneX says they have covered it in other patients, so it is likely. It does make me a little nervous that it's not a sure thing because right now I'm having to go into debt just to stay afloat and I'd really like to be able to pay that off.
Recently I have had to start using some herbs to supplement what I'm doing medically since the Big Pharma meds aren't fully effective. I'm using CBD salve and Sweet Annie salve made with infused Coconut Oil (neither covered by insurance and both custom made for me). Coconut oil has been shown to help these kinds of muscle symptoms I've been having as it has neuroprotective properties. In addition I think fairly soon I will have to replenish my supply of Benicar used in the Marshall Protocol and I still don't know what the outcome will be of my Medicare appeal for that. Our last step was to send the request to the contractor Maximus that deals with appeals regarding medications at the stage 3 appeal.
My son is waiting to hear about the next steps in his testing in preparation for brain surgery (also at Emory). I had been there with him during the day while he had extended EEG monitoring in the hospital, but now there are other tests they have to do before he can be approved for his tumor to be removed. Social Security cut him off by mistake and once they restarted the record that he has Medicare and Medicaid was wiped out of Emory's record, so that's another arduous mess to clean up.
I had hoped I could get all my testing out of the way and be on some sort of more definitive treatment by the time he was ready to have his surgery and that my upper body strength would be intact before that happened, but Murphy's Law seems to be getting in the way at every turn.
All this is very precarious. I am writing a manual about the running of the house for when he will inevitably need to come up and help, but I'm hoping that I can be in good enough shape to help him through his surgery first while I still can. This is truly a race against the clock!
I really need to move the jewelry in my Etsy shop as soon as possible to defray alot of these costs that are coming up. If anyone reading this has people you buy jewelry for (or you buy jewelry for yourself) please take a look at what I have available and consider buying your holiday gifts here.
Giftbearer or if you do crafts yourself and are in need of jewelry supplies or other crafting supplies you may find some things you can use here; GiftbearerSupply
Hopefully this will be a win/win for us both :-)
Here are a few photos of items I currently have for sale in each shop.
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| Cactus Quartz #4 with Citrine Underneath Surface $24.00 |
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| Butterfly Mini Cards 6 for $8.00 |
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| Tumbled Kunzite Chips - Medium $15.00 |
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| African Inspired Stuffed Earrings $55.00 |
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| Pink Pearl and Lampwork Bracelet $60.00 |
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| Mosaic Triangle Frame Earrings $130.00 |
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| Green 3 Strand Necklace with Copper and MOP $95.00 |
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| Chevron Australian Opal Ring $250.00 |
Sunday, August 23, 2015
New Developments in My Disease Process; The Next Leg of the Race
As time went on the jerking at night continued to get worse and the sudden sleep attacks subsided (they come and go in clusters usually every few months). I think maybe I had one sometime during the week before I was to have the sleep study.
Then sometime in the same week (one evening between July 19th and 25th) I was going down my driveway to get the mail and fell really hard on the concrete. My feet twisted and bent back under me and my knees skidded about a foot downhill. It hurt terribly but after I caught my breath I could tell that although I was skinned pretty badly nothing was sprained or broken. I just assumed I must have slipped on something or put my foot down in a strange way and that that had caused it, so I got up and went into the house and washed off the scrapes, thinking nothing of it. It took off quite a bit of skin on my ankle in the front and strangely turned blackish purple after the scab healed and came off. This also happened to the scrapes on the knee even long after applying vitamin E and even CBD salve and time for healing.
Then a few days later came the sleep study on July 29th. I didn't have my usual tech because she didn't work on Wednesdays and only worked at night so I wouldn't have her for the daytime study either. I did make her a pair of earrings though to drop off for her when I was there; little dream cloud stud earrings with rainbow moonstone cabs set in them and a brushed finish. The stones had more flash than you can see in this picture. The sterling silver sheet I cut them out of is quite thick, so getting this much detail into the crevices between bumps wasn't easy!
This other tech seemed unaware of the fact that my doctor had ordered several other leads to measure the jerking on arms and legs, looked at me as if she thought I was crazy when I asked her about which they were, but then found out as she was applying them that they had in fact been specified in the order, she just didn't recognize them as such. After that she started telling me each thing the others measured. While that was interesting from a scientific standpoint, I didn't have the sense she was giving this explanation for my benefit, but to cover her own ass in case she flubbed it up. Her social stiffness only intensified my uneasiness. Both the skill and the bedside manner of the technician you're assigned can make all the difference in what kind of experience you have during one of these things.
This one must have asked me two or three times if I was on nighttime oxygen as if she couldn't believe it or thought it was strange. She mentioned they didn't get many people in there who are on oxygen. I found that hard to believe! Although my breathing pattern is rare I'm sure that others with underlying conditions also probably are on oxygen. Maybe just not on her shifts. The whole time I just wanted to press a buzzer and have her removed like on the "Gong show", LOL. This was not going well.
She noticed the healing scabs on my leg and asked if I had fallen and I told her I had.
I was deathly cold and even after turning the thermostat on the wall to heat I still couldn't get warmth back into my body once I'd lost all heat. It's some sort of autonomic problem I have had for many years, and unlike most people I have to thermoregulate from external sources much like a reptile.
Between the usual wires and the oxygen canula I had a facefull of stuff on me. The oxygen they used was an old-fashioned bottle on wheels. I hoped that she knew how to use the thing because I sure didn't. She connected all my wires to a boxy-looking machine with read-outs on a screen on the bedside table that I hadn't seen in my previous sleep studies (which she didn't give much explanation about, just said it was the type of machine my doctor had specified to be used for the test). It had what looked like a floodlight attached to it on the side and the face of the square box screen had some lines (which I think corresponded to the different leads). This time in addition to the EMG leads to measure the jerking they also had one that went on near my clavicle on the left side measuring Co2.
After that I was glad to be left alone. I was getting pretty sleepy when she had been hooking me up, but once I lay down to try to sleep then the jerking started and just made me more alert with each time it happened. If any of you have had this for any length of time you will know how exhausting it is, both systemically and to the muscles themselves. I've been experiencing it at least since last January if not before and it's gradually been getting worse and more frequent ever since. Knowing that I needed 6 hours of sleep in order to make a daytime study valid this constant interruption was really frustrating!
The tech came in a few times to fiddle with equipment because her monitors weren't picking up what was on the machine in my room, and that interruption didn't help me be able to sleep either. Then after several hours of violent jerking that left me even more exhausted and exasperated I finally fell asleep. I was awoken by the door opening and a guy walking in to fiddle with the box connected to the leads. I told him that I had finally fallen asleep after jerking and jerking which I thought would never stop, and asked him how long I had slept. He told me about 3 hours and that I was doing well. He and a young woman had just come on for the change of shifts, and although they had woken me up I was relieved that I had some nicer techs now for the next part of the study. The trouble was, then I couldn't get the 3 more hours needed, and next thing I knew the young woman was back in there telling me that the doctor had called off the daytime study since it didn't look like I would get 3 hours more in in enough time. I told her I could keep trying if that would do any good, and that my transportation wasn't scheduled to pick me up until 6 PM that night and I wasn't sure if they'd come earlier or not, but she said that the doctor had already canceled it. I told her I didn't know how many of these Medicare would cover, so I was concerned we'd never know about the daytime sleep attacks; whether they're actually narcolepsy or not. Luckily my transportation service agreed to pick me up early. The broker had called a taxi, so that was more flexible than if they'd scheduled a van service. I showered to get all the glue off, got dressed, gathered my belongings, and went out into the hall where I handed the package containing the earrings to the young woman and ask her to give it to Gana when she came in and she said that she would give it to her. I went down to the lobby to wait for my ride knowing I'd probably fall asleep for the other 3 hours shortly after returning home. I was feeling pretty disgusted as the taxi pulled off with me headed back to my house.
The jerking continued night after night and it got to the point that it was worse to try to go to bed at a reasonable hour because all I did was lie there and jerk until around 4-7 AM, and as time went on it got more and more like 7 than 4. Three hours a night turned into two hours a night and I was getting really worn down after several more weeks of this.
Then within a period of 3 or 4 days during the week of August 10th - 15th I fell 3 times in one week. It was strange because I was tripping on nothing in some instances and in one of them my toe barely nicked the corner of a handbag in my bedroom and it seemed that instead of my foot kicking it out of the way as would have normally happened and my other leg widening my stance to brace myself it was as if my legs did nothing to protect me at all and I went down full force on my hands and knees. This caused another skinned area on my knee because of rug burn on my carpet. It has healed considerably now and doesn't seem to be leaving the big blackish purple coloring behind that my first fall a few weeks ago did, but I knew something wasn't right because I've never been accident prone and 3 falls in one week is unlikely to be a coincidence!
One day after the last fall I began feeling a perceptible weakness in all my muscles (all except in my face). There started to develop not only a weakness but a feeling as if my muscles were over-worked. I was "feeling the burn" so to speak all the time as if I were constantly exercising. I had no idea what on earth was going on but I didn't have a good feeling about it. Then stiffness started to set in. It did not seem related to the last fall because that one only injured my right shin, not the left, and the left leg was where I noticed the stiffness and more of the weakness.
On my return visit to the pulmonologist this past Monday, August 17th I told him about the falling. He seemed totally surprised although he admitted that my sleep study was quite abnormal; that although the oxygen was improving the overall AHI (Apnea/Hypopnea Index), that the Biot's Breathing is still there, and that he saw some other abnormalities he had not seen in the other two studies (evidence that something's progressing with the underlying condition). He told me that the EMG leads picked up the jerking clearly, that it was not happening at exact intervals but with random time in-between jerks, and happening pretty frequently. He also told me that I was technically awake (probably a split second before dropping off to sleep), and that there were transient Delta waves picked up in my EEG in that waking state. (Delta waves are only supposed to happen in the deepest stage of sleep) so this is very strange. The last irregularity he mentioned is that the percentage of the last stage of deep sleep once I got into it was larger than the other stages. He didn't know what these abnormalities meant but definitely thought it was odd.
Then he tested my muscle strength in my arms and legs, asking me to press back against his hand while he was pressing one way. I had to try with all my might to push up with my left leg and after awhile it trembled in straining to do so, but then something really bizarre happened. It suddenly started jerking wildly. It kind of scared me. I told him that nothing like that had ever happened before. He didn't make much of a comment but let go of my leg and said something about the weakness in the left leg which I couldn't quite catch, and then said it was a good thing I was going to see a neurologist, and that she might even want me to see another specialist.
He asked if I'd been having the daytime sleep attacks lately and I told him that no not for a few weeks, and he told me to come back in December, further out than he normally had scheduled me before, since that was the first symptom I had been referred for. He made a comment that for the life of me I can't figure out the meaning of; "This is good for me, but bad for you." Not sure if it was the longer wait until the next appointment with him he was referring to or something else. As we walked out into the hall I told him that I'd pretty much given up on neurologists because as a general rule they gave up on me, and I had tried for years to live with my neuro problems and compensate as best as I could, but now that things are getting worse I cannot afford to let it go any longer, to which he agreed, but then said he wasn't sure what he's done would be of much help to the neurologist and made another cryptic statement; "You don't want a diagnosis, you want answers". Since we were already headed our separate ways in the hallway I didn't have time to ask him what he meant. I couldn't tell if he was asking me (supporting me in) what I wanted, or telling me what I should want. Realistically I know that in this system of medical care you pretty much have to have a diagnosis for insurance to pay for treatment (and he's well aware of that too), but bottom line, I want it treated and I want to not have to suffer anymore. As I was leaving I said, "Well...It's there whether it has a name or not." He agreed. If I could wave a magic wand I would like to have never had it in the first place and started out whole, but I never had that choice. Not now, and not when I was a child going through other neuro stuff that try as I might, kept interfering with my constant attempts to live a normal life. Quite frankly I'm tired of having to swim upstream, but that's what I'm handed so all I know to do is do my best to enjoy my life and hope that medical science has the technology to fix it after a number of years have now passed, or in the near future.
I left that day feeling increasingly stiff with tired muscles and managed to make it down to where I had to be picked up, but barely. The driver was a jerk and took almost 2 hours to pick me up, then went into a long list of self-justifications as to why and no real apology. All I wanted was to go home as soon as possible and go to bed. My body was aching and I was so tired I couldn't stand one more minute of consciousness.
Thursday was supposed to be the day I saw the new neurologist but another van service failed to pick me up even though I'd arranged transportation to get me there a half-hour earlier than my appointment time. Kimberly, the woman who does quality assurance for the transportation broker system in Dekalb County was flabbergasted that they kept saying they were 20 minutes away, yet never got here at all. Each day it has become more difficult for me to walk and I feel this neurologist might not be like the others I've seen who've done a few tests and looked baffled at the results, shrugged their shoulders and sent me on blankly. I figure if anyone in Atlanta can figure this out and connect all the dots it would be her, but as it got later and later and no driver showed up the clinic told me that I'd have to reschedule. First they told me the first available appointment was "next year", and I told them that was ludicrous for a patient with these symptoms. The receptionist told me she'd contact the doctor and see if she could somehow fit me in sooner and the next time she came up with was October 8th (I believe). I told them this is still not soon enough, and this could be something in which early enough detection is key and I don't want to be ruined for life because I wasn't seen in a timely manner. I asked if this was really OK with her (the neurologist) that it wait that long, given the symptoms I've been having recently. She then told me she'd contact her again, say that date's not acceptable, and mark the message "high priority", and that most likely I wouldn't get an answer until Monday when a certain woman would be following up on it. I hope the neurologist is not put off by my assertiveness but given the fact that I have no caregiver or help at home to help advocate on my behalf I have to make absolutely sure that things go as they should. I just worry about what will happen if I get to the point that I can't do that for myself anymore.
I had hoped that my testing would be out of the way by the end of September and that I'd be on some sort of treatment by then because my son has extended EEG monitoring coming up at Emory then and I want to be there for him during that time (at least during the day). They require that somebody stay with him to keep him awake when he has sleep deprivation. This is in preparation to his having laser surgery on his brain for a benign tumor which causes him to have seizures. He has the chance for a normal life if he can get through that and possibly some other tests. They need to pin down exactly where the seizures are coming from and he has to have a certain number of seizures on videotape in order to meet the qualifications for the surgery. This surgery is still very new technology, so the screening process is rigorous, and a board meets at the hospital to make the final decision as to which people get it and which don't.
I'm trying to rest as much as I can and not walk around too much, trying to save my strength until something can be done. Out of necessity I've had to cut back on the number of hours I'm spending on my Etsy shops because I'm absolutely exhausted. I find that I jerk less when I try to sleep mostly in the daytime rather than at night, so I'm listening to my body until there is something that will get it to stop. I don't have much of an appetite but I notice I am a little more hungry after I sleep for a few hours during the day.
Thursday, April 02, 2015
Chronic Disease Strikes Again
I guess some of my readers have wondered where I am lately. It's been awhile since I've really written in my blog, and alot has been happening.
For those who don't know the background on this; 12 years ago just about every system in my body went haywire and I almost died and was finally diagnosed with Sarcoidosis. I got on a cutting edge off-label protocol called The Marshall Protocol just in time, and was on it and feeling improvement for 2 years when Medicare Part D came along and once my drug coverage was transferred from Medicaid they would not cover the medications. The cost out of pocket was too much on my very small income, and I was unable to qualify for the few medication assistance programs that existed at the time, so I had to go off it.
I tried controlling it by taking it easy, eating a mostly macrobiotic diet and limiting light exposure and for awhile that kept things to a low roar, but gradually my pain level increased and more symptoms started returning. I tried to push it out of my mind. I really didn't want to believe I was having disease progression because I felt I hadn't had a chance yet to really succeed in life and was tired of all this. I just wanted to put it behind me and get on with and enjoy life.
Meanwhile sales had not been good in my Etsy shops and I thought if I could just build up my stamina maybe I could try to do some things to increase my income and hopefully give my business the shot in the arm it needed to really make it profitable.
My plan was to go to physical therapy (hopefully pool exercise and massage), reduce my pain level and then possibly take some part time work to pay off debt and reinvest more capitol in my business so that I could buy some tools like a rolling mill, kiln, and electroforming equipment, and maybe take some more specialty classes to add some new techniques to my arsenal. I've wanted to be able to make my budding vine bracelets in other metals for awhile so that a larger number of people can afford them, as I think that really is one of my signature pieces.
During physical therapy I had a near fainting spell, and began noticing for several weeks that my breathing was difficult and had some motor slowing that would last several hours at a time on and off.
My primary care doctor had suggested I have a Sleep Study too because I was also having sudden episodes of really strong sleepiness. I figured if it was narcolepsy then I could just take a pill for that and move on to my goals. I actually thought that test would be negative, so went into it just wanting to get it over with.
Well I went in and they hooked me up to an EEG and all these other sensors to monitor my breathing and heart rate, etc. I was attended to by a nurse named Gana who was very nice and that night there were just a few other patients, so it was pretty quiet. The TV just so happened to be tuned to a show called Prospectors and they were pulling big honking aquamarine crystals out of the ground. We talked a little bit about jewelry and gemstones before they started monitoring.
An infrared camera filmed from across the room my every movement as I slept (or tried to anyway).
I have sinus problems, so having something sticking up my nostril to sense my breathing was kind of difficult. I don't think I slept very well and kept waking up needing to drink ice water. Even then I thought the test would come out negative and that it was just my sinuses that were irritated and maybe all that stuff hooked up to me that was interrupting my sleep.
Little did I know it went alot deeper than that. About a week or two later I got a phone call from the sleep lab saying they wanted to do another sleep study. I asked why and the woman on the phone told me that they wanted to do a CPAP titration. Mind you I had not even seen the doctor for a full report yet and I was shocked. I told them this and said "Are you sure? I was having lots of sinus inflammation. Couldn't that be it?" A man got on the phone and said I had stopped breathing. Then I spoke with a nurse who confirmed that was correct.
I made the appointment thinking Oh God what a can of worms have I opened up now? I didn't know the half of it; not yet. I asked the nurse from the doctor's office to send me the full report.
When I went back to the sleep lab they hooked everything up to me except the nose sensors and then the same nurse I'd had the previous time came in to fit a mask on me. The first one was a nasal mask and when it was hooked up to the machine it shot air with such force up my nose I thought my eardrums would burst. It seemed to be hitting an obstruction somewhere in my sinuses. Then I tried another one that was similar and that didn't work either. Then I tried a full face mask. That wasn't as bad since the air was more indirect, but the straps were pushing my head down into my neck and increasing my pain after awhile, so I had to try one with just one strap around the back of my head. That shifted a bit but it was the lesser of several evils. I thought at first that maybe I could tolerate it, but then the minute I started falling asleep it would suck air out of my lungs rather than blowing wringing them out like one of those space bags you see advertised on TV. The air from inside my lungs smelled like some sort of awful athlete's foot fungus.
After a number of hours of this, and twisting and turning to get comfortable I had all I could take of that. The nurse, Gana came in around 5 AM and I told her I was having a problem. The look on her face said it all, although she wasn't allowed to tell me the details. She took off the horrible thing and all the wires and said she was so sorry, that it was hard to watch, and hoped the doctor would find something that would help me. I asked if this happened very often and she said it did to some but was not common.
The next night at home was rough and left me gasping for air numerous times. It was worse than it was in the sleep lab.
A few days later the report came in the mail and it was much worse than I thought. Apparently I had a raging case of central apnea (which differs from obstructive in that it's usually neurologically based if not caused by heart failure). The test did not detect any heart problems, so that left the brain stem etiology. My brain fails to send the signals to my lungs to breathe. I stopped breathing 30 times in each hour of sleep, and I was also breathing too shallowly at other times, resulting in oxygen desaturation. hey documented it while I was awake watching TV as well!. Various symptoms I'd had for years started to all make sense.
I thought back to some neuropsych testing I had at age 6 that suggested that I had some central nervous system dysfunction or damage that was something to do with the regulation of alertness, and thought back to various EEGs I'd had where they found slow waves where they shouldn't be. The headaches, the intense period of complex partial seizures I had for a few years around 1986, and one neurologist had told me something "wasn't hooked up quite right" in my brain. Nobody ever had an answer for these things. All they seemed to be able to do was document it while I struggled alone as best as I could to live a normal life.
An MRI was scheduled which yielded no further clues as to exactly where this is coming from.
Now I find myself at age 54 with a failing respiratory system and I still don't fully know why. Lots of circumstantial evidence is scattered around like shards of glass on the floor but no smoking gun. This elusive thing whatever it is comes and goes like a thief in the night, robbing me of my most basic functions switching them off and on at will. I have possibly lived with it all my life and in order to adapt to this state of being one can never trust tomorrow. It holds all the cards in its hand and I'm just its marionette. I've tried fighting it, ignoring it, reasoning with it, but in the end it has a mind of its own.
I have been unable to eat solid food now for over a week except for a few crackers or a little bread. Sometimes I have little appetite and other times I really miss good food, but when I try to eat a normal meal about 6-8 hours later I get terrible stomach cramps and then diarrhea.
I've had this intermittently for awhile but never was able to find out what it was. Since the CNS controls all automatic functions chances are this is all part of the same thing. Sometimes when I have a central apnea event I wake up feeling like I'm going to crap my pants. This was the first clue that it must be connected. At times it also increases my pain in all the places I usually have it about 100 fold, like a lighting bolt going down all the nerves in my body. luckily those really painful ones have subsided over the past few days.
Breathing during the day is difficult at times. Certain things seem to trigger it such as sitting upright too long or standing too long on my feet, a stuffy room or car, or too much exertion, even intense concentration for too long. It seems as though this is happening around the clock.
When I next saw the pulmonologist he told me that it was the worst results he'd ever seen and that when he checked the literature there hadn't been another case like mine since the early 1900s in which someone had Tuberculosis of the brain. Because of the rarity of it he gave some sort of presentation on my case to other doctors. He went on to say that this is very hard to treat, and acknowledged that CPAP wasn't a viable option since it made me worse. In a nutshell it was clear that my body needed oxygen, so that seemed the obvious solution, even if not a full cure so he put in an order for that but his nurse needs to get Medicare to approve it and that's not easy with their guidelines. They have to find a medical equipment company that accepts my insurance and then Medicare requires them to have me monitor my o2 saturation at home at night. The reason for this is because Medicare has some sort of bias against accepting data from a sleep lab. The standard is saturation must drop to 88% or lower for 5 minutes during sleep . In the sleep lab mine dropped to 81%.
All I can say is this thing better not betray me when we need for it to show itself most! Otherwise I could be sacrificing brain cells and my condition could end up even worse if I don't get oxygen. Having it at nighttime only is still leaving me vulnerable during the day, but it's a start, and once that's established then maybe they'll approve it during the day too. As long as this has probably gone untreated I can't afford to fall through the cracks of the medical system now.
STAY TUNED FOR PART 2
Thursday, September 24, 2009
Joe Biden Sets The Record Straight Against Scare Tactics Regarding Medicare
This post is going to be short, but I just noticed this great video posted on Twitter tonight and thought I'd pass it on to you.
http://www.youtube.com/watch?v=MeSeZ5h_ndk&feature=player_embedded
Here are the details about proposed improvements in Medicare;
http://www.healthreform.gov/reports/medicare/index.html
Saturday, September 19, 2009
Doctors Speak About A Better Healthcare System
I have presented in previous articles perspectives from patients on healthcare and this time I thought I'd give you some examples of doctors' thoughts on this topic.
Dr. Fred Moolton was a cancer researcher and he has made a video about why we need a better option than what we currently have in this country and he speaks also from the perspective of a veteran as well as a physician.
Dr Fred Moolten Discusses Healthcare Reform
Some dentists in Nebraska decided to form a project called Mission of Mercy which provides free dental care to those who otherwise cannot afford it. This is an excellent example of an initiative not driven by profit but instead by healthcare providers who want to help people and are willing to take a financial loss to back up their beliefs with real action! I would love to see more projects like this offered. If doctors in all specialties were to volunteer like this at least a day or two each month I think we'd see the whole attitude change in this country.
Straight from the Doctors Mouth: Healthcare Reform in Nebraska
These doctors speak about examples they've seen in their practices in which patients have come to them sicker because they cannot pay for healthcare they need.
Doctors Speak Out for Health Care Reform
This doctor is really funny, but his message is dead serious!
Health Care Reform Explained
What happens when the doctor becomes the patient?
Why I care about Health Care Reform so damn much
This man wrote a song about the sad state of affairs our health system is in;
Monday, April 27, 2009
Carmella's New Plan of Action Against Mange Mites, and Mine
Carmella went back to the vet on Saturday and started a new regimine to combat the Mange mites that proliferate at the slightest opportunity. Dr. Norwood did a skin scraping and found that she in fact does have Demodectic Mange as she had before. The bacteria seem to be under control for the most part, although she was developing an infection in her ears. Just my luck that one problem ends, just to make room for another.
Dr. Norwood seemed perplexed as to what to do to improve Carmella's immune system, and mentioned that maybe there is a product that could be ordered that he doesn't have in stock, although he doesn't know alot about that kind of stuff, as it falls more under homeopathic medicine than mainstream veterinary medicine. In the meantime, something would have to be done to kill the mites that are multiplying currently. I asked whether she could be given a higher dose of the Pro-meris every two weeks, and he said that that might possibly work, but that there really was no precedent for it and it would be off-label, so he was reluctant to try that option.
Then I asked him what he thought about using Ivermectin. That he seemed to think was a good idea. He went into the back room where he deliberated for a good 15-20 minutes about the dosage. When he had finished his figuring he sent the male vet tech in to give me the instructions for dosing. 
Invariably this guy always seems to forget something or relay some instruction insufficiently. It would be much more reliable if Dr. Norwood delivered these instructions himself. The prescription for Carmella's ears was predicatably forgotten and the vet tech ventured a guess as to whether the Mange treatment would address the secondary ear infection, so I asked him to go ask Dr. Norwood, not wanting to take any chances. In a matter of just a day or two Carmella could be worse and need to come back in, so I figured I'd save myself that hassle.
The vet tech returned with a tube of antibiotic ointment and some stuff to clean her ears with, then went over the instructions for the Ivermectin (1% solution). I am supposed to titrate up as follows:
Day 1: .2 ml
Day 2: .4 ml
Day 3: .6 ml
Day 4: .7 ml
Day 5: .8 ml
Day 6: .9 ml
Day 7: 1.0 ml
Day 8: 1.1 ml
Day 9: 1.2 ml
Day 10 on for 2-4 months (continue to give 1.2 ml per day)
So far as of day 3 there have been no adverse reactions.
She is on Gentizol ointment (manufactured by VetOne) for her ear infection (Gentamycin sulfate, USP, Betamethasone Valerate, USP, and Clotrimazole, USP), taken for 14 days, and the ear cleaning solution is Vet Solutions Vetoquinol (an 8 oz. bottle).
Carmella is still biting and licking herself somewhat but not constantly. I let her spend a good part of the day out in the sun this afternoon which she thoroughly enjoyed, lying on an old green cushion just outside the back porch. Maybe being out in the air and the sun will help dry out some of the pests that are plagueing her.
Yay! The Carmella-cam is working again! I thought I might have to buy the hosting service's paid service to have it work again, but apparently it fixed itself. When I got on the computer today I saw it come up on my computer for the first time in several weeks. Then I checked the link in my seidebar and saw it was working here too. Be sure to check her out in the kitchen!
I am preparing for some jewelry competitions and finishing up a local custom order, as well as going to some doctor's appointments.
After seeing my GP last week it looks as if the bone loss in my jaw and pain in those bones is finally going to be addressed, as will my appeal to Medicare for my Benicar.
By Friday or Saturday I began to have intermittant shortness of breath. Now that I have run through the medication I had stockpiled some of the earlier symptoms are returning, (but it doesn't take a rocket scientist to have predicted that outcome). You'd think that Medicare would know that. What is really disturbing about that whole situation is that they obviously know but don't care. I am not the only one on that off-label protocol whose health is in jeopardy because Medicare is too cheap to continue paying for the lifesaving medication that people with a number of autoimmune diseases need for which this regimine is indicated. Their denial is hurting many, possibly hundreds of people with Sarcoidosis, Chronic Fatigue Syndrome, and Lyme Disease, just to mention a few conditions.
I may have to ultimately take my case before an Administrative Law Judge because although it is cheaper out of pocket by buying it from India than from the manufacturer (Sankyo) here in the US, I do not know how long I could fork out that amount of money either (or whether I could do it every single month).
I have made only two small sales this month and that's not enough to keep me and Carmella going. I hope these two sales are just the beginning, and that larger ones and more of them will follow.
If I can find out whether or not I have an active bone infection, and get that taken care of on my insurance, then getting the bone regeneration procedure should not be any expense at all since it is research.
My GP is going to speak with the guy doing the bone regeneration project and ask if he knows anyone he reccomends for me to see to assess the infection status before we get started.
Please check out my Etsy shop often and tell your friends and relatives about it. The 20% off Repeat Customer Appreciation Sale continues through midnight Mother's Day (May 10th). I want to be around for years to come to make lots more jewelry, and to continue to take care of Carmella. If I can pay off her vet bill it will sure be one big load off my mind. I've currently got a long way to go to raise $2,000, but if enough people take action it is an achievable goal. I created this ad for a necklace that I think would make another wonderful gift for a mother. The Labradorite, pink pearls, and faceted Rose Quartz create a understated and classy look combined with the sterling melon beads and Hill Tribes Silver Rose focal.
Tuesday, February 24, 2009
New Approach To A Pesky Problem
Carmella's Mange is getting better in most places, but the combination Mange and bacterial infection on the bottom of her feet has persisted despite several weeks of antibiotics, dips, and some supplements to boost her immune system, and a few days ago I noticed she had worms again.
I took her to the vet today for a worming shot and her sore feet and he suggested putting her on a new type of flea drops called ProMeris that research has shown has improved Demodectic Mange dramatically. They only had the size for extra-large dogs 88-110 Lbs., but they want me to split it in half and put 3.5 MLS on her every 2 weeks. We are doing this now instead of the dips, and he gave me an ointment called EnteDerm which has a small amount of steroid and Nystatin, and Neomycin in it to put on the ottom of her front paws 2 times a day just until most of the inflammation goes down. We also talked about trying her on a new food to rule out any possible allergies that could be preventing her from healing and I got her some special Science Diet hypoallergenic food. I was surprised at how light it was considering the large size of the bag.
As Dr. Norwood prepared the worming shot, Carmella began to panic. These seem to sting particularly much, but despite this momentary panic she still eagerly wanted to jump up on the vet and all his staff before and after, and the shot was quickly forgiven and forgotten.
The female vet tech and Dr. Norwood both commented on what a beautiful dog she is, and I told them that I have taken some really beautiful pictures of her and plan to look into some possible dog food endorsments pretty soon since she is so photogenic.
I want to start getting some of these photos blown up and offer them for sale next month too. I was hoping to do so this month but my natural gas bill seemed to suck up every last bit of money I would have had for new endeavors, so I've had to hunker down this month and concentrate mostly on planning for new items and strategies about where to market my work.
I hope to be able to make a decent amount of money in the next few months and pay off all of Carmella's health expenses so that I can then turn my attention to getting some dental care (which I have not been able to afford in over 20 years). Now that CareCredit covers that as well I may be able to correct some problems I haven't been able to for a very long time.
During the time my own autoimmune disease spun out of control, the summer I was finally diagnosed with Sarcoidosis, I suffered sudden and frightening bone loss in my jaw within only 5 days. I first noticed that my mouth and my eyes felt very dry. One day I looked in the mirror and to my horror there were suddenly gaps between my teeth that weren't there before and my gums had turned black. Each day for five days this gap got wider and wider. I was given adntibiotics (Zithromax), which stopped the acute infection in that area but much of the damage had already been done by the time I was able to get to a doctor.
Neither Medicare nor Medicaid covers dental care and all I was able to get was an assessment of the damage. I remember going to two dentists both of which were contemptuous and not interested in helping fix my problem and neither were willing to believe this happened within a 5 day time-frame. "Oh my God!" the first remarked, looking into my mouth and then again after the X-ray. I was told in a very cold and dismissive tone by both of these dentists that my teeth would probably fall out soon because the damage to the surrounding bone was quite extensive and there was nothing to replace it. Later when I started talking to others with this disease I learned that these kinds of problems were not uncommon and that dentists often wanted to blame it one's not taking care of one's teeth rather than recognizing that autoimmune diseases do correlate with sudden damage in this area due to disordered Vitamin D metabolism. I knew in my heart that I'd always had good teeth despite the fact that I'd had to do a DIY job of teeth-cleaning for the past 20-some years, so it was not a matter of neglect on my part. Even after all this my teeth were intact. It was the bone around them that was disappearing before my eyes. I set about calling 60 or more dentists around the Atlanta area, none of which were willing to make a payment arrangement. Isn't it ironic that dentists as a group tend to blame the patient when anything goes wrong yet when you try to arrange some sort of payment plan they refuse to make it at all possible. "Sorry, but I'm not young or pretty enough to go out on a street corner and come up with a few thousand to pay my dental bills, thank you", I wanted to tell these guys. I don't think CareCredit was very well-known at that time and very few if any dentists were taking it. Besides, I'd just filed bankruptcy after I had to stop working completely and put my business on hold because of my health problems, so had it been available I probably wouldn't have qualified anyway. I remember bursting into tears after seeing that first dentist and finding out he wouldn't even do so much as a cleaning unless I could come up with enough cash to do a root planing, and that wasn't going to happen anytime soon.
The other dentist, a periodontist, was even worse, and not only did I walk out of there with no work done. I was socked with a big bill that took a year to pay just for the consultation. Medicare was supposed to have paid for that but he vindictively billed it so that the claim would be denied. He promptly told me to go to "some free clinic" with all the vehemence he could muster.
The only one I knew of was unsanitary and I had a friend who had his tooth opened up for a crown and then was told that they "don't do crowns" so he "better go get some other dentist to do the rest within two weeks before infection sets in". He was flabbergasted to say the least and said to them that surely they weren't going to just leave him with a gaping hole in his tooth when they knew he didn't have $400 to get the rest of it finished by another dentist. He had paid them something already. It certainly wasn't free, just reduced, and had he known ahead of time they were going to leave him like that he would never have let them open up his tooth.
I knew that such "care" could leave me wide open to further infection and even possibly hasten my death given my medical condition, and I knew not to go that route.
After that I read up on anything being done on bone regeneration and NIH was doing quite a bit on that and research correlating bacteria in the mouth with autoimmune diseases. Even so, nothing was on the market yet and my doctor didn't seem to have the time to stay on top of the studies to get me into any on the ground floor. After that I have been trying to maintain as best as I can in hopes that I don't lose any more of my jawbone, keeping in mind that someday the technology would be there to regenerate bone.
A friend of mine recently told me she had a bone scan and that she might have osteoporosis, and that got me thinking again about regeneration of bone. I'm sure many of you readers have seen the commercial for Boniva with Sally Field in it where she talks about that not only does this medication for osteoporosis stop bone loss but also reverses it. This advent of science has not been on the market very long, so chances are there are paralells in the science of jaw bone regeneration. I'm not sure that this same medication would work for the jaw as it does for other bones because I think some people have had side-effects that involved spine or hip bone regeneration at the expense of jaw bone (meaning Calcium was pulled from there to build up the spine or hip bones where osteoporosis tends to hit).
I need to look again at current studies in this specialty and see what has been done in the past few years. Maybe now is the time to act, when science seems to be gaining in leaps and bounds! Just yesterday I saw a news segment saying that scientists may be onto a great discovery which could render all strains of Flu virus defunct. They've identified an antibody which when introduced into a flu cell accesses an area in which the cell is defenseless and cannot mutate to escape the immune system's assault upon it. The discovery is even supposed to work on Bird Flu which the CDC has been worried would be a major agent for a pandemic.
This could be of tremendous significance and it could really tell us alot about how viruses work.
It is amazing how all of these seemingly unrelated pieces fit together to give us the bigger picture. Perhaps NDV also does this? I suspect that what we know about it isn't all.
I wonder what role stem cells play in all of this too? The body is like an amazing machine with all parts being integral in its peak performance, so science's focus on optimizing its function rather than merely killing the virus (or bacteria for that matter) is right on target. If the body can be helped to do the job it was designed to do with outside help playing more of a supportive role then the chances of permanent cures to any number of diseases are much better.
When you look at disease as a give and take process you can see how all this fits. Science has confirmed that in most cases disease takes hold because of two triggers; one being genetics and the other being environment. If one finds out how to control both of those two factors therein lies the key to a solution in the end.
Virus, bacteria, and other parasites are often all around us at all times and sometimes even within us at certain levels, yet there are many people and animals that manage to coexist with these things without ever becoming ill.
Others get exposed to these microorganisms and become very sick and seem unable to shake them (like Carmella or me, for instance).
The common denominator is a geneticly programmed weakness which allows these microorganisms to enter areas of the body and its cells where it should not be. Certain genes determine susceptibility or lack of susceptibility depending upon whether they are switched on or off. Scientists are just beginning to get a handle on which genes are in which position in which diseases and what determines whether these genes are switched on or switched off.
Until fairly recently genetics was thought to be fairly set in stone, but recent discoveries have proven that theory wrong. This is where they are finding out that diet and other practices can change the body's programming at any stage of life. The adage that "biology is destiny" no longer holds, and that brings new hope for cures to many conditions that up until recently were thought hopeless.
I watched Barack Obama's address to Congress tonight and his speech was quite inspiring. In the short time he's been in office he has already done alot that is positive. I had written him letters a few months ago about healthcare, the economy, and one or two other topics and lo and behold this guy really does use suggestions in his policy-making!!! He has already used some of the ones I wrote in my letters.
I've always been very active in the political process but in most cases never got any inkling that any of my suggestions were implimented by other political officials. Occasionally I'd receive a letter back saying he or she agreed with me, but rarely did I see any action come out of it. I figured that it went on the pile with thousands of others and was quickly buried, but not this time! Obama made a point tonight to emphasize that he is fast-tracking more access to healthcare, and help to people who have been laid off.
I am dismayed at Georgia Governor Sonny Perdue and other conservative Governor's stubborn talk about refusing Federal stimulus money to their respective states on principle simply because they don't want to be held accountable (what they consider "strings attached"). These guys should be ashamed of themselves refusing or even considering refusing money which is absolutely vital to their constituents basic needs. Of course this will not affect them at all; these well-fed, well-housed, "VIPs" who have the top of the line health insurance.
As it stands now COBRA is only getting about a $25.00 subsidy toward premiums whereas the full stimulus package (if accepted by the Governor) would enable states to kick in 65% of the premium, something that laid-off workers desperately need. At least in this state COBRA costs about $900/Month for a couple to remain insured after one spouse loses his/her job.
Obama tonight made a wonderful point that certain people may be angry at the terms of the package that was recently passed, but that decisions should not be made out of anger. Such political protest that negates the needs of the people is not helpful. I wholeheartedly agree. If these Governors want to make a statement then let them refuse money for their personal expense account, salary increases, bonuses, or turn down their own health insurance, etc., but they should not get to decide the fate of the lives they are entrusted with; those who have nothing left to sacrifice and expect them to sacrifice some more simply because of their personal power struggle with the new president.
The other day I decided to post a thread in the Etsy forum to generate some ideas as to how to solve the batch uploading problem on Etsy. The response was rather dismal with several people posting versions of "That would be nice but...impossible" with few answers about how to improve it. It was sad to see so many resigned people who could not even fathom that anything better could be devised to make everyone's work more easily seen. The current system is just not cutting it for me and I gather I'm not the only one. By responding that way we unwittingly give permission for the status quo to stay in place and we don't open ourselves up to the possibility of change.
All progress starts with big dreams. To those naysayers who continue to cling to the old ways that have grown obsolete I say, "How's that working for ya?"
For every new and great frontier there seem to be sticks in the mud along the way, in science; as in those who are slow and resistent to embrace wonderful cures as they unfold such as that developed by Dr. Sears for Distemper, in politics; as in the new approach of Barack Obama, and in many other arenas. We must pull these sticks out of the mud and set them on the path that will take us all where we need to go. As much as we would like to think we do, succeed or fail, we never do it alone.
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