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 |
