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

Carmella Has A Mean Itch But A Warm Bed

The past week has been one of pestilence for both Carmella and I; me with the flu, and Carmella with the most nasty and aggressive case of Demodectic Mange. If you've never seen it before this is what it looks like up close and personal!

Within just 7 days it seems the little mites are eating her alive.

So far it has not reached the top side of her, but all down her chest, neck, face, stomach, and now one leg, there appears to be an enemy army invading, pushing the borders further each day.

It's as if some unseen force is determined to do her in. Her hair comes out in my hand as I put ointment on her twice a day, and I'm not sure the antibiotics are doing any good at all.

It has even made its way to her eylids. You can see why it's dubbed "Red Mange".

Tomorrow she goes back to the vet to be dipped in the morning. The vet tech the other day told me they had hoped the ointment and the antibiotics would do the trick, but I wish they'd just done it last time she was there because maybe then it would be getting better now instead of worse and she'd be on her second dip. Given Carmella's history they don't need to take any chances. The "wait and see" approach in a dog like this could be disasterous and unless the risk of treating her health problems aggressively is extremely high then I figure why not? At some point we will find out what she's genetically susceptible to and then there will be no need for guesswork.

Once this Mange is out of the way there is the snorting problem and the possible hip dysplasia to look into. I hope that will be all the health problems she has. She has certainly had more than her share of adversity already!

Today I was at Sam's club to do some grocery shopping and found this beautiful dog bed for her!

I brought it home and put it in the kitchen and she jumped right in it.

Before she had to sleep on some tiny black pillows from the bed she had way back in July that she'd chewed the bottom of. I've been looking for a nice durable and comfortable one, and just happened to luck out today.

This one is nicer than all the dog beds at PetSmart and I got it for a much better price too!

It's actually flannel on the outside and the stuffing is so soft and cushiony I actually lay down on it for awhile. It made me wish I had something like that to put on top of my mattress.

You can tell by the photos that Carmella is really enjoying her new bed and doesn't notice her itchiness quite as much. The Pedi-paws I bought to file down her toenails she was not as thrilled about. That will take some getting used to.

Tomorrow she should feel a little better once Dr. Norwood brings out the heavy artillary on the little bastards in her skin.

http://Giftbearer.etsy.com

A Little R&R (Re-Set and Re-Group)

I've been ill for about 3 weeks and have not been able to be online much lately without feeling worse but tonight seem to have a window of opportunity to write something. At least for the time-being I have enough energy to get a few things done so I'm striking while the iron is hot, as my condition fluctuates throughout the day. I'm waiting for some test results to come back from my very disorganized and haphazard doctor's office, but not holding my breath. One time it took three weeks to get results in the mail that I really should have gotten a phone call from the nurse about.

Alot has happened since my last entry. I have not felt up to working on my jewelry, and various fees sucked up the money I had set aside for the rubber stamps, so it looks as though ordering them, and launching my new line will have to wait until after the holidays unless I happen to make a decent sale (or several) this month.

A friend has fallen on hard times as well, and I am feeling somewhat useless in trying to help. It is never quite so evident as it is right now just how important it is to have enough money to fix all the leaks in the boat that invariably come along when you least expect it, which present themselves at the most inopportune times.

Then another goal had to be put aside (one I'm not at liberty to talk about just yet), but if you've been reading diligently will recognize as that "upsetting event" which required more of my time and resulted in my overdoing it and compromising my health. Sometimes life sends us a message that if we don't sit down it will knock us down whether we like it or not. I am the kind of person that has a tendancy to "get it done or die trying", and I just had to come to a point at which I said, "OK, I'm not super-woman and there is no way I'm going to be able to do it alone." That situation is still up in the air, but the future of that will in large part depend on how much back-up I will have at the crucial time when it's most needed. I have to keep reminding myself that it's not a matter of weakness, but one of my having done it virtually alone for way too long already, and that nobody succeeds at anything alone. Somebody said to me about 2 weeks ago that maybe it wouldn't be the end of the world if that particular goal didn't happen, and that which surrounds it folds, and maybe she's right. If the right people just aren't that into it the way I am then perhaps it would be an empty victory to see it through. Recent events have only strengthened my thesis that man's very survival depends upon each cog in the wheel doing it's part for the whole to function effectively. If that sounds alot like Socialism then so be it; right about now Capitalism as it exists here in America has become way out of hand and a little Socialism, getting back to the basics, whiddling it down to only that which is most important would do us some good.

I was thinking tonight about how we need to re-set our clocks, compasses, and the like; kind of have a "do-over", on a personal level with our busy hectic schedules and priorities, and on a more global level with the environmental and consumerist monster we've created, wanting more, bigger, better, faster...wanting more and more "stuff", mucking up our lives with more and more complexity when really what is needed is more simplicity, to slow things down, and to savor the people in our lives, the art, the warmth, and the beauty in the smallest of details.

People are so upset about losing money in the stock market, but then there are those who don't even have money in the stock market and are worried about how they'll eat and pay their bills, and this avalanche is now carrying with it the bodies of those who only weeks or months ago were most concerned about their investments. In the mass of scrambling and desperate arms and legs such concerns quickly pale in comparison to the more immediate concerns of where they will draw their next paycheck, and how long any money saved will last.

It is just beginning to dawn on people that in a flash of an eye all of this could be gone and husbands must then face their wives, possibly to really see them for the first time since they met, stripped of all the trappings and usual distractions, treadmill turned off, faced with days which seem endless, the sudden quiet, a pregnant pause...hearing the scrape of fork against dinner plate, a sound so familiar, usually drowned out by wheels turning in their heads, and the white noise of perpetual motion.

Last night I snuggled up in my bed wrapped in blankets in front of a good movie on TV, Carmella curled up, her head nestled in the crook of my arm, and although so much had gone wrong in the previous several weeks I looked at her and thought how this was going to be the best holiday ever because she has grown into a beautiful young dog, healthy and robust and very much alive.

It has been an amazing transformation taking place before my eyes over the past month or so. It seems as though her DNA takes turns and a certain breed will show up more prominantly for a few weeks, and then another, all the while making the puzzle of her lineage a little less mysterious. Breeds I was pretty sure she had in her before I'm not so sure of anymore, and some new possibilities emerge. In just the past month her neck and chin have gone through some pretty dramatic changes. The new collar I'd just adjusted for her a month ago is already almost too small for her. I looked closely and found that she has developed loose skin around the throat, and looking at her chin revealed some little crinkles. I'm thinking it's probably not enough to be Bloodhound, but it could possibly be Shar Pei. The only thing is that Shar Peis have very clunky snouts with pendulous lower lips, and she definitely has a much firmer and thinner snout. Although her forehead is wrinkled she does not have the squinchy eyes either nor do they droop. If it is Shar Pei then whatever else is in her must be balancing her out to make her more streamlined. That is possibly German Shepherd and maybe some Shiba Inu. She may have some Pit Bull in her because of her powerful jaws, but otherwise she is looking less like a Pit Bull than she was a few months ago.

Tonight I read more about Dingoes and interestingly, the material said that they have a habit of going for the feet, so that is definitely still a possibility. I also read that Shar Peis often chew on everything and like Pit Bulls can be stubborn with problem behaviors and require special training techniques to overcome those quirks. Carmella chewed clean through the cord on my heating pad in only 5 minutes during when I left her on my bed as I made myself something to eat in the kitchen. I came back through the livingroom to find her gnawing on the detatched pad. I really didn't need to have one more expense on top of everything else. That will have to wait to be replaced next month although I really need to use it now.

In addition, she stripped off the laminate on one half of the door between the garage and the kitchen. I came home from doing my grocery shopping one day to a floor scattered with splinters of wood.

All this got me to thinking again about DNA testing, so I did a Google search and found two companies who now offer over 100 breeds. In case you would like to get your mixed-breed dog identified, Mars Veterinary offers what they call The Wisdom Panel for $125.00, a blood DNA test which can identify 157 breeds of dog; http://www.wisdompanel.com/mixed_breed_analysis/breeds_detected.aspx

The only breeds not detected are; Dogue de Bordeaux, Beauceron, English Toy Spaniel, Skye Terrier, Miniature Bull Terrier, Swedish Vallhund, Tibetan Mastiff.

The other is MMI Genomics, a subsidiary of MetaMorphix Inc., offers the Canine Heritage Breed Test which can identify 105 breeds of dog at present, and costs $120.00; http://www.canineheritage.com/breeds.php

This test is done from epithelial cells inside the cheek in the mouth of the dog.

The following article tells you why getting your dog tested is useful; http://www.webvet.com/main/article/id/1578

Once I get Carmella's current vet bill paid down some more I plan on getting her tested.

If you would like to help with Carmella's vet bill;

* Buy an ad on my blog to the right

* Use the donation button (at top of side-bar)

* Or*

* Shop in my Etsy store at http://Giftbearer.etsy.com/

I still have a ways to go before her bill will be paid off completely, so whatever you can afford would be greatly appreciated. Every bit adds up.

My son will be coming for a few hours today. This is the first time he will have seen Carmella. He and his girlfriend took a look at my blog about a week ago and they both thought she was really cute. I haven't seen my son in a long time. It will be nice to get a chance to visit with him, and I hope he will be able to get three days off from his job around New Years. He lives in Athens, GA. which is about an hour and a half away from here. He'll be coming up with his girlfriend who will be driving to Stone Mountain related to her work.

Half The Battle Won!

This morning we waited expectantly for the serum to be delivered to the vet and when it came in he administered it by I.V. Carmella came through that part with flying colors!

Dr. Norwood called me around 2:00 pm to give me an update on her condition and said she was eating and drinking and was showing no ill effects. Yay!

When I asked if he was about to do the other shot into the Central Nervous System he told me at that moment that he had never done a spinal tap of any kind, only observed one and that he didn't feel qualified to do that part. My jaw dropped. Until that point I thought he was ready to do the whole thing and I said, "Well if she's got the virus there too then how are we going to get rid of it all if the serum given in the body can't cross the blood-brain barrier?" He admitted that posed a problem but seemed terrified at the thought that he might kill her in the process if there was one wrong move with that needle.

As nice as he is, nevertheless, I wondered why he waited until then to tell me this. We could have called around a week ago to find a vet who had done spinal taps before when we realized this would probably need to be done in order to achieve a full cure and prevent neurological disease-progression in brain and spinal canal.

Last night I kept waking up startled, then going back to sleep, just to jolt awake again. This is a tricky procedure and a vet does really have to know his stuff to pull it off. One lady on a Distemper forum told me that her vet in Indonesia had no choice but to do it herself because the closest vet who was really qualified was 18 hours away by land and then about 12 more hours by plane. The statistics say that the chances of ending up with a dead dog are 99% on a vet's first try, and this woman was lucky that her vet fell into that 1% of successes, having no experience.

I was somewhat exhasperated when my vet balked at the last minute like that but felt that if he was really that unsure of himself it would be best for another vet to do that part. I just wish he'd told me this in the beginning so we could have had one arranged to give the CNS shot within 48 hours of the shot for her body.

After checking to see whether this would be disasterous I finally got word from one of my contacts that the time-frame between the two parts may not be near as crucial as the time-frame for giving the first shot. The figure I got was that the spinal tap injection should be done 48-72 hours later. I guess if I can't arrange for it to be done until Monday it won't ruin anything. I just don't have an answer yet as to what the maximum time would be safe to wait.

First I called UGA College of Veterinary Medicine and they weren't too helpful, telling me to have my vet call the Referral Coordinator and then they would make an appointment (no idea how soon that would be or whether they'd do the procedure if I miraculously found a ride down there). "No way" I thought. "We don't have that kind of time to be messing around with a bunch of beaurocracy at a time like this, then to possibly have to convince a vet on the spur of the moment I knew nothing about that she needs this and that it will save her life if he didn't know it already". I knew that if I found somebody to drive me and a sick dog all the way to Athens, Georgia and I got some arrogant clinic doctor who only wanted to believe Distemper is fatal 100% of the time and scoffed at this treatment, I was going to be hopping mad! Who even knows if they have the serum there anyhow or whether they'd have it in hand when I got there? I took down the number of the Coordinator, but turned my attention to any other options I could think of that did not involve going on what could be a wild goose chase.

Then an old friend popped into my mind from over 2 years ago who used to work as a manager for a mobil vaccination clinic that set up shop each weekend in pet supply stores. She was always calling vets to cover the various weekends and I remember she had about 9 of them who rotated. Most of them seemed like liberal types who really believed in making the health of the animal top priority, so I thought if anyone would do it she would likely have some names from there she could give me.

I e-mailed her and waited for a response. My heart sank when I received none. It began to grow dark and I thought she must be home by then, so I called, still finding her number inside my address book, and got an answering machine. I left as much information as I could hoping she was just in the bathroom or drying her hands before she could get to the phone and finally hung up, seeing as she didn't seem to be there. Then I went to my computer and started writing Daveyo to see if there was any word from Dr. Sears but nothing there either.

Then the phone rang again and it was someone from the shelter calling from my phone message yesterday when I had tried to reach them and couldn't. I told the woman that Carmella had distemper and she remembered her well (apparently she was a favorite of the staff) and was horrified when I told her the news. "I am so sorry", she said, "I guess sorry doesn't even cover it". I told her how my vet noticed in the records that she'd only had one Distemper vaccine while there and no boosters, and that he said a puppy as young as she was when they picked her up should have had them every 2-3 weeks to fully protect them, and how each vet check showed no weight documented and just said "normal", and how I was not told anything was wrong with her other than a slight scratched eye until after I'd signed all the papers and paid the adoption fee. Then I told her about the treatment she had to have to save her life and that now we were out on a limb until we could locate a vet to do the rest of it. She said she hoped I found one and said she would give the information to the shelter director. I gave her the links to the formula Dr. Sears had written on how to make the serum or get it pre-made, and to the forum on Distemper that was connected with Dr. Sears and Daveyo. She thanked me and I asked her whether she had another number where I could reach her if I needed to and she said they didn't have extensions. I told her that half the time they don't answer the phone or put it on hold or on a recording so that was not good. She did give me her e-mail address and she told me she'd look into getting treatment for her other dogs and that she would stay in touch.

I convoed a few people on Etsy while I waited to hear from any of the other people I'd contacted and then after I'd almost given up hope of hearing any news for the night the phone rang. It was Beverly on the other end (the one who worked for the mobil shot service). She sounded happy to hear from me and said she had just gotten home, that she was no longer working there, but that she did keep a husband and wife team of vets who used to work for the service as her personal vet for her dog. She told me that one of her two Pomeranians had died of congestive heart failure and so did her son's dog, Zephyr, but that she had both of her other dogs, although one was getting old and starting to develop dementia and was mostly blind.

Beverly came up with two other vets as well. I plan to go down the list tomorrow and see if any will or can do the rest of the job. I've gotten this puppy this far, so we might as well go the whole nine yards and get rid of every last remnant of this horrible and disfiguring disease.

Once this is all over the real recovery can begin. They tell me it could take a full year for everything to return to normal, but that at around 50 days improvement should be noticeable. As for the secondary pneumonia, that is being taken care of as we speak; two shots a day of a combination antibiotic, given intramuscularly. I know Carmella will feel alot better once she can really breathe again without all that junk in her lungs.

Well, tomorrow it's back to calling around. I hope we have that part resolved by the end of the day and can look toward the final leg of this endurance test and beyond. Carmella's life has really just begun.

All proceeds from my jewelry sales will be going to pay off Carmella's vet bills.
You can help Carmella in her recovery by purchasing from
http://Giftbearer.etsy.com