New WordPress Blog About Patient's Rights; Memoirs of a Strong Woman

I recently started a new blog completely devoted to my healthcare experiences and on the topic of patient's rights. Be sure to follow it and keep up with all the new developments.

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

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.

Cactus Quartz #4 with Citrine Underneath Surface
$24.00

Butterfly Mini Cards
6 for $8.00

Tumbled Kunzite Chips - Medium
$15.00

African Inspired Stuffed Earrings
$55.00

Pink Pearl and Lampwork Bracelet
$60.00

Mosaic Triangle Frame Earrings
$130.00

Green 3 Strand Necklace with Copper and MOP
$95.00

Chevron Australian Opal Ring
$250.00

    

Coping with Serious Illness and Disability

I am finding I need more sleep now than before and that my muscles are less uncomfortable when I just let myself sleep during the day as much as necessary. Last week a part of me still felt as though I'd wake up one day and this disease would be better and that I would just get up and go for a walk around the neighborhood. The stark reality of the situation started to really sink in toward the end of the week when I tried walking a little more inside the house and landed back in the same stiffness and constant droning ache as I felt on Monday when leaving the pulmonologist's office. 

My Sarcoidosis caused some mobility problems but mostly just when I was on my feet or walking longer distances. This experience of seizing up and losing strength when I walk to another room in the house is new to me and is requiring alot of adjustment. I had to get the power chair that I got donated from a non-profit organization fixed, and at first the repair company thought it was just the batteries needing to be replaced, but now they think it's the motor. These used ones are good to have in a pinch but are kind of precarious because you never know how long they were used and how much longer they'll last. If it's the motor that could be quite expensive, and they say it might end up being so expensive I might as well get a new power chair. They brought me a loaner while they're doing a diagnostic on mine at their shop. This loaner is a Hoveround 

which drives a little differently because it has front wheel drive and that gives it somewhat of a drift that I have to compensate for. I was doing pretty well maneuvering, considering; getting back and forth to the kitchen to get food and drink, to and from the mailbox, etc. and then tonight I ripped a chunk of veneer off the door to the kitchen as I was coming out into the other room (because there is really only 2 inches clearance in that doorway) and the same is true of a few other doorways in the house; both bathrooms' doorways are actually too narrow. For those I need to transfer to a small rolling chair normally used as an office chair to get through them. I managed to take some of the epoxy I use for jewelry-making and splint the piece back onto the inside of the kitchen door by binding it tightly together with two of the cords I use as pull cords for my doors. These doors are hollow so will probably need to be replaced eventually, but hopefully this will hold together until I can have all the necessary modifications made.

I'm becoming increasingly aware of everything in my house that needs modification. It's a ranch style house and is not bad in terms of accessibility, but the doorways and cupboards are the main deficits, and I'll probably need a ramp leading to the garage and top of the driveway where vehicles usually pick me up and some modification to the area where that door is so it's not such a tight space to turn around in. The non-profit agency that had the ramp installed at my front door was going to help with doorway and other modifications but never got back to me. I'm going to have to get back in touch with them to see whether they can still do the rest. I'm not sure if the man I was dealing with is still working there or not but he was very good because he himself was in a wheelchair and understood these problems.

If I do need a new wheelchair then I might be able to get it through Medicare now that I also need to use it indoors but apparently that won't help me right now because there's about a 6 month waiting period (I guess because of all the claims to be processed because so many people need them).

I put these pull cords on some of the doors so that I can close them behind me.

Talk about DIY, LOL, these were originally supposed to be Brock Strings for a contract I had hoped to get with a vision rehabilitation clinic several years ago, but fell through. It's a good thing I'm hesitant to throw things away because they are really coming in handy right now at a very crucial time.

Tonight while getting some ice from the freezer I found that my left arm has gotten quite a bit weaker. I could barely hold the glass full of ice and had to transfer it to my right hand. This is worrisome because right now I have to rely almost entirely upon upper body strength. I know there must be assistive things that people use who cannot use both lower and upper body, but I don't yet know what they are or whether I can get them due to cost or availability. I am determined to stay in my own home no matter what. I will have to do a search for companies that sell such devices and items to help people with mobility problems. One thing I have been needing for awhile is a C table on wheels for my laptop and as a work surface over the bed. I find that it intensifies the muscle tension if I rest it on my legs, so I need it to be high enough (or adjustable to be high enough) so that it puts no pressure on my legs.

Also, I want to make some more hoop earrings for my Etsy shop since they seemed to be the most consistent sellers before, and I need to do this soon before I no longer have the arm strength. Right now my right arm is still in pretty good shape, but I don't know how long that will last. Both hips are involved, the left more than the right, so positioning can be difficult so as not to trigger the tensing that's been going on and ends up as pain even from the pressure on my butt when sitting. It's a long time until October 8th when I see the neurologist, but this disease process isn't waiting, so I need to be prepared for whatever comes.

It's been more difficult for awhile now for me to do things like thread a needle for beadweaving. Although I can do it, it takes much longer. At first I thought it was my vision but doing it with magnification didn't make it better and I realized it was my fine motor coordination.

Carmella was a little nervous the first few days I had to use the wheelchair indoors, but is gradually adjusting, learning not to take advantage of when I open the door by galloping out uninvited. She senses that something is wrong, sniffing and licking my legs and sort of hovering around me when I'm in the kitchen.

Before my old laptop went on the fritz I had bought a program called Kindle Publishing Pro in order to write a book (and maybe some shorter things) that I could market on Amazon, but that got corrupted and wiped out the first chapter and part of chapter 2. I am not sure how to download the program again, but I think what I will do this time is write it in Microsoft Word and then try to get the Kindle program downloaded again and copy and paste it from Word into Kindle Publishing Pro, so it will autoformat for Kindle. Once I get this completed this is something I can sell to help with out of pocket expenses and (if it generates enough income) maybe also to help my son after his surgery. I hope that my experience will be helpful to others going through similar challenges.

New Developments in My Disease Process; The Next Leg of the Race

The oxygen I've been on at night has reduced the overt apneas quite a bit and seems to have improved the daytime dyspnea, but after my last post I was still having quite a time with those narcolepsy type symptoms and the jerking when trying to fall asleep. The pulmonologist set up another sleep study, this time both night and daytime which he said if it came out negative (and he didn't think it would), would prove that the jerking was not breathing-related and would indicate something else. He thought that if it came out positive then that would cancel everything out; meaning that either it would get a false positive or a positive and it would be impossible to know which it was. The one caviot is that I would have to sleep at least 6 hours during the night for the daytime study to tell us anything because if I didn't then I could possibly fall asleep more than normal simply from sleep deprivation. If narcolepsy were present in addition to the sleep deprivation we'd never know. I knew going into it that this would be a feat akin to driving your car between two toothpicks laid almost side-by-side, but if that was the only way to possibly get some information which could lead to more complete treatment then I'd give it a try.

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!

Just as I'd feared the technician I was assigned that night was not my cup of tea; a 60 something Jamaiican woman with a starchy demeanor, pretty much all business. I had the TV on to distract myself, being slightly nervous, and the first thing she did was ask me to turn it down when she returned to put on my electrodes. (I'd had to turn it up because it seemed like the air conditioning was making it hard to hear). Then, she asked me to move the ice I brought out of the way, and when I told her I get dehydrated easily due to my disease and need to have it next to the bed in case I wake up and need it in the middle of the night or I can't get back to sleep, she started to challenge me. Apparently the pre-registration person I'd informed of my special needs had not passed this information onto her. (In contrast, Gana, the one I usually was assigned to had been nice enough on my previous sleep study to come into the room and ask if I needed some ice water without my having to ask). That kindness had really made an impression on my heart.

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.

Medicare Barriers To Treatment

Until you really get sick you may think Medicare works pretty well, but over the years there has been a gradual erosion of benefits. The Medicare fund has been quietly pilfered and reappropriated piece by piece for a long time. Many doctors have opted not to accept Medicare at all and some who used to accept it no longer do because of its complex system of paperwork and its maze of requirements, many of which make no clinical sense. Those doctors who continue to take Medicare patients are often "trained" to adopt a sense of futility when trying to obtain prior authorization for certain treatments. This places them in a difficult ethical position, as there's a great divide between what's best for the patient and what can be obtained reimbursement-wise.

Identified as having a rare and atypical breathing pattern called Biot's Breathing my pulmonologist recommended oxygen for my condition but warned me "get ready for a big fight". Little did I know I was about to embark upon a long, arduous process which more closely resembled an obstacle course than prior approval just to get the life-sustaining substance my doctor was to prescribe. As my respiratory symptoms worsened in the ensuing weeks, I began to wonder whether I might have a stroke or a heart attack by the time the underlying hypoxia was treated. One especially severe episode left me with tinnitus in my left ear and shot central nervous system pain down my arms and legs. There were nights I held on by my fingernails, wracked by severe central apneas, shortness of breath, chest and lung pain, faintness, sudden bouts of bowel urgency such that I thought I would crap my pants at a moment's notice, and even episodes of sleep paralysis in which I was fully aware I couldn't breath but was unable to move or do anything about it. At 2 AM I often found myself wondering whether I should go to the emergency room, or even whether I should be admitted to the hospital for my own safety. I was at home alone with a force that was playing "chicken" with my life. For over a month I white-knuckled it at home, every night hoping I would wake up the next morning, while my symptoms during the day became even worse than those I experienced at night, a few hours on, then a few hours off.

Several times I became very sleepy when I was out grocery shopping and actually fell asleep on my feet nearly falling to the ground.

Meanwhile my doctor and his nurse were trying to find a medical equipment vendor who accepts Medicare, which took nearly a month. Then came the first hoop to jump through.

In order to qualify for portable oxygen I had to take what is referred to as "the 6 minute walk test." If you can pass that chances are you can't go out anyway, LOL. What they do is hook you up to an oximeter to measure your blood oxygen level and have you walk back and forth down a hall for 6 minutes. If during that 6 minute time-frame you desaturate to 88% or below then you can qualify for Medicare to cover a portable oxygen unit. The technician kept telling me to breathe the whole time (more than was natural for me), so of course I didn't cut it, and as it was still early in the day my full spectrum of symptoms hadn't kicked in yet.

After several more weeks of respiratory agony Medicare finally authorized nighttime oximetry at home so that I could gain the "proper" evidence that I was desaturating at night. One company didn't respond, so my doctor's nurse had to call another. They were supposed to call me and didn't. Then one day they just showed up at my door with the oximeter and no explanation as to why it took so long. The other company then called wanting to bring their equipment over, so I had to tell them the other company beat them to it. It wasn't a total loss though since I had a very interesting conversation with the man on the phone about "compassionate use" letters, as he told me that he'd just received a memo that morning stating that Medicare could take a letter in the absence of sufficient data from the two tests if a doctor could state that;

1) There is no approved drug that cures the condition.
2) That other options have been tried and failed.
3) That oxygen would relieve the patient's suffering, has a likelihood of helping, and will give the patient better quality of life.

In the nighttime test I had to desaturate to 88% or lower for a total f 5 minutes in order to qualify for nighttime oxygen. That night I hooked it up to my finger, lay down, but didn't get much sleep, since this was the last test which ultimately would determine whether I'd get oxygen at all, and the pressure had me on the edge of my seat. The next morning I wondered whether I had obtained the information sufficient for Medicare's requirements and worried I may not have because I'd had so little sleep. To cover all bases I prepared my doctor to write a letter of necessity just in case, because at that point things were getting pretty rough.

A week later the results came in and it just so happened that I qualified under what they call  "Group 1." In a few more days the equipment vendor brought out an oxygen concentrator, tubing and other parts. I felt relief within minutes the first night. Before I fell asleep I felt more energy, mental sharpness, and the shortness of breath was much less. I could feel the upper part of my lungs that had often felt stuffed start to ease up, cough improved, my nose was clear the next morning and even my baseline pain was reduced. I could tell that I had been hypoxic for many years because I can't remember when I felt that normal.

This was a good start, but I found it only carried over for a certain number of hours after I was off it the following day, and if I went out it wouldn't take long for the symptoms to return. On hot days I get winded now even sooner.

In addition I hadn't anticipated that I would be allergic to the plastic in the cannula that went in my nose after the 2nd day of use. After about 4 days I had a big pus-filled sore between both nostrils where the plastic made contact, and my body was mounting a big inflammatory response making my nasal passages swollen and the stuffiness returned. I tried a mask instead which did get rid of the allergic response since the plastic didn't touch the inside of my nose, but I found that there wasn't enough holes for exhaled air to escape and my face started to sweat pretty quickly (which kept me from sleeping too).

I went online to research this problem and found lots of reports from others about allergic actions to the plastic tubing. One person suggested on one of the forums covering the cannula and prongs with fabric medical tape, so I got some and decided to try it out.

This photo shows 1 uncovered and the other covered. The ones I have are manufactured by Salter Labs. I have tried to find out the type of plastic used to make them and so far have only been told PVC and "plasticiser" (whatever that means). I know there are many potential polymer compounds, and in order to determine what exactly I'm allergic to I need to know what kind of plastic is in it.

This PubMed article documents this allergy in patients using oxygen cannulas;
http://www.ncbi.nlm.nih.gov/pubmed/10315103 

The tape did the trick, although I notice that the sticky stuff eventually bleeds through and makes my nostrils a little sticky.

Apparently there is one company Topah Medical that sells cannulas made of Silicon and claims it is non-allergenic and non-carcinogenic. They're made by a company called Everest

They sell a 4 foot one for $41.00 and a 6 foot one for $45.00. Although pretty pricey compared with standard cannulas they are warranteed for 1 year, and can be boiled once a week without damage in order to sterilize and rid them of bacteria inside and out.

Apparently it doesn't work for everybody but seems not to cause a reaction in most people.

Meanwhile I am in the process of appealing Medicare's decision not to cover Benicar every 4 hours as is used in the Marshall Protocol for Sarcoidosis.

The response Humana (Georgia's default Medicare Part D provider) gave me was as follows;

Your request was denied

We denied coverage or payment under Medicare Part D benefit for the following prescription drugs(s) that you or your prescriber requested: Benicar 40 M TABLET 180/90

Why did we deny your Request?
We denied this request under Medicare Part D because:

Benicar has been prescribed for Sarcoidosis. Although the medication may have been initially denied at the pharmacy due to a quantity limitation requirement, upon clinical review it appears that the requested drug isn't prescribed for a medically accepted indication as stated in Section 1860D-2(e)(1)(B) of the Social Security Act by reference to section 1927(k)(6) of the Act. As noted in section 1927(g)(1)(B)(i) of the Act, this includes FDA-approved uses and off-label indications which are supported by one or more citations in the approved drug compendia (drug reference guides)-Micromedex Drugdex Information System and American Hospital Formulary Service Drug Information. The physician's prescribed use of this medication doesn't meet the criteria and isn't covered.

You have the right to appeal
If you want to appeal, you must request your appeal within 60 calendar days after the date of this notice. We can give you more time if you have a good reason for missing the deadline. You have the right to ask us for a formulary exception if you believe you need a drug that is not on our list of covered drugs (formulary). You have the right to ask us for a coverage rule exception if you believe a rule such as prior authorization or quantity limit should not apply to you.


Note that InHumana is provided the discretionary power to set aside these restrictions and that they chose not to (not only once but twice!) They are well aware that without this medication I will eventually die. Apparently that's perfectly OK with them.

I have now appealed it and been denied two times. Appeal number 3 goes to an arm of Medicare called Maximus Federal Services.

I have written the Secretary of Health and Human Services and am establishing a paper trail to prove the current Medicare regs aren't working for patients and that an amendment needs to be made to put such decisions back into the hands of patients and their doctors.

Both issues; the Medicare process for approval of oxygen and off-label protocols could be made alot more patient-centered if enough people wrote in to HHS, President Obama, and their legislators on the Federal level and insisted on it.

If you would like to give your input/support you can write her and the HHS Committee @

Sylvia M. Burwell
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

In many states DME (Durable Medical Equipment) companies have a competitive bidding process and this also hampers one's access to quality treatment, so if you're writing your legislators about oxygen be sure to ask that they vote to abolish that practice because it places priority on lowest price rather than quality service that is best for the patient. Medicare beneficiaries deserve better!

Representative Bernie Sanders from Vermont who is running for President in 2016 has been a consistently strong advocate for those on Medicare and Medicaid. In addition to Sylvia Burwell I have written him and President Obama regarding these issues.

If you yourself are ill then make your voice heard. If you are healthy then don't wait until you need it to write your representatives in Congress. Do it now so that if you should need one or both of these types of treatment the option will be there when you or somebody you love needs it urgently.

I am willing to take this all the way to the Supreme Court if I have to! Insurance companies are supposed to be there when you need them in such crucial times, not obstruct you from getting the care you need. They were never meant to make medical decisions in place of one's doctor.

Chronic Disease Strikes Again - Part 2

While waiting for oxygen to be approved by Medicare I am taking the necessary steps to get back on the Marshall Protocol. There have been a few changes to it in the past 10 years I've been away, most notably that the antibiotics are no longer necessary. Trevor Marshall (the originator) has found out that Benicar (Olmesartan Medoxomil) does quite well in addressing the underlying pathogens on its own. (For those who don't know how this works in the treatment of autoimmune disease be sure to read this .

10 years ago when I had to go off the medication the out of pocket cost was $120/month. I checked with local pharmacies; CVS and Walmart and was shocked to discover the price had skyrocketed to around $1400 for a one month's supply at MP dosage (a 40 Mg. pill every 4-6 hours).

Back on the Marshall Protocol study site I found that almost everyone except those with the best insurance coverage were getting theirs from Canada in generic form.

Americans can order a 3 month's supply without raising any eyebrows with customs. I just received the prescription from my doctor today and am getting ready to fax it.

I had to order it on a credit card although it's much less expensive from Canada than it is anywhere in America, so I am doing this on faith that I'll make that money back through sales or whatnot. On my very low income it was a big expense. The generic I'll be getting is made in India.

I just found out my application to Prescription Hope was accepted. This is an organization that will advocate on behalf of the patient to get medication donated from the manufacturer. They charge for the advocacy only and it's  $24.00 a month. for each medication ordered. It still remains to be seen whether the maker of Benicar, Sankyo will release the full dosage I need, as in the past they've only allowed people to have 1 pill a day; the dosage used to treat high blood pressure. If the manufacturer doesn't agree to the full 6 pills a day I may still need to order from Canada when I need the next refill.

I am trying to find a representative to market some of my jewelry to shops in the Southwest to get it moving faster. Etsy alone is just not cutting it. So far I have been unsuccessful at finding one but am still looking.
I'd like to find a good market for the beadwork, especially. Since my medical out of pocket expenses are going up I really need to be bringing in more money on a regular basis.

Recently I purchased Kindle Publishing Pro software to write a book with. I had the first chapter written when I discovered a bunch of files on my computer were corrupted and one was the book. I'm dreading it but will have to reinstall Windows 8 which is a huge job to then put everything back the way it was on my computer, so I may wait a few days to do that. Last night I was on it for 6 hours with tech support to troubleshoot and then back things up that will need to be saved, and I woke up feeling really awful today. It was just too much.

The proceeds of the book (if I can get it to save next time) will help defray some of my medical costs and also maybe help my son with his future medical costs for his condition.

I've made a playlist on Youtube of my favorite songs which I can listen to as I'm working on the computer. Between that and watching comedy I'm processing this as I navigate the weeds of the healthcare bureaucracy. Although there are lots of barriers to overcome I am beginning to see a glint of light at the end of the tunnel.

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

NeoWorx Seems To Think They Own My Blog - Weird Glitch

I don't know what's going on but all of my content on Google seemed to re-direct to Neoworx with a "for sale" sign on the right-hand corner. No, my blog is not for sale. Not at any price!

I have written Neoworx to tell them they need to remove the redirect, and am looking into how to contact and report this to Google and Blogger.

They responded to tell me that it had something to do with the hit counter by NeoWorx. I deleted it from my layout and so far that seems to have fixed the problem. I just need to check all my other links on Google to make sure everything goes right to my blog now.

I have some interesting content for you readers coming up, so stay tuned :-)