June 25, 2015 Here I go again..

I have been waiting until the lump in the right maxilla goes away, to write. Unfortunately it's still there, but very slowly shrinking. The lump causes a lot of inflammation in my right cheek that I can feel. The size of the area of inflammation has drastically decreased, but is still really annoying.

In November, I returned to Florida from Washington. It was an ungodly hot winter in South Florida and apparently a very nice winter in Washington (my luck).

I tried to change my profession to being a custom landscape and wildlife photographer to escape the mental stress and strain that comes along with dealing with other peoples pains and problems as happens when you are a physical therapist (PT).

Unfortunately I didn't have the funds to keep going until it was successful. I still have my website www.dmhallphotography.com and my photos look amazing framed or on canvases, just saying..it's still a work in progress, but after working all day as a PT, still fighting the OM and trying to get back in shape, I don't have a lot of left over energy to work on my photography site.

So I returned to working as a physical therapist in Florida, but over the last year my left jaw lumps and pain have gotten worse. My left ear became the worst and felt like there was a knife in it fairly constantly. I had trouble hearing. The left side of my face frequently went numb, which made it hard to think and my left eye occasionally watered. I started using peroxide, alcohol and ASAP silver gel in my ears and the ASAP silver and Flonase in my nose every day. This combination worked to control the symptoms most days, but I was still feeling this overall increase in symptoms.

The job in Florida, did not go well. I won't get into details, but the hours ended up being much much longer than they should have been and the pay was salaried. In the end I wasn't making enough to pay the bills and didn't have time for a second job to make up for the difference. I also was perpetually worried and scared about how to proceed with my worsening jaw symptoms. As from past experience, I know that there is no help to be found in Florida.

My friends in Washington, at the last facility that I worked at, started texting me that they were short staffed and needed help. In a somewhat rash and rapid decision, I gave notice and returned to Washington. It made the most sense. I could work a decent ethical job and get the medical care that I needed by the competent and caring people that I already owe my life to.

Long story short.  I followed up with Larry Ward at Comprehensive Medical in Kirkland, was put on holistic remedies specific to my needs and returned to Dr. Borneman in Anacortes.

Today, I am happy to say, I have had my 10th and 11th debridement surgeries. This was the 3rd time for my left posterior maxilla and mandible. It was aggressive and I think thorough. Usually shortly after the surgeries, my tongue roams lightly back there to remaining lumps and my heart sinks as I know the lumps weren't fully removed.  This time, there are no lumps remaining !!!

I had an excess growth of bone that had formed under my mandible on the left. I could trace the channel up from the lump into my jaw. Since the surgery, this bony growth area is really really sore, so I am very hopeful that it will go away.

I am excited and hopeful that this journey (freaking nightmare) will be over soon!

August 22, 2014

Still plugging along. Continue to have a small lump in the right posterior maxilla. It is slowly getting smaller and I can't wait for the day when I can post that it is gone.

My left maxilla and mandible are doing weird things. About a month ago the lump that I have in the left posterior maxilla got bigger, then real hard and painful. It drained some and after several days calmed back down. Now for the last two weeks I have developed cysts way in the back of my mouth on the left. They are like bubbles of fluid about the size of a pencil eraser. When I go to break them open, they turn to blood blisters and then pop. In a few days, it clears up and goes away. The lump seems to be a little smaller.

At this time I have returned to Washington state to help out with the last facility I worked at.

Since I am here (in Washington) I have scheduled an appointment with Larry Ward at Comprehensive Medical in Kirkland, WA for further evaluation using the electrodermal system. He is so busy that I can't get in until Oct 20, 2014. He is worth the wait though. Only problem is I plan to leave from there and head back to Florida. So if I need anything surgical done, it will have to wait until next spring. I love Washington during all seasons except winter!

In the last year..

It's been almost  a year since I posted. I try to ignore the abnormalities in my head and pretend to be normal. Sometimes I think I do it too well. When I meet people, they have no clue.

I have been subjected to several comments about being overweight. I'm not going to launch into the whole problem, so I just ignore the obnoxious comments, looks and judgments. So I'm not skinny anymore, but I am above the ground! I guess it's one of those life lessons. Actually this whole thing has been a life lesson in patience and tolerance.  Well I'm still impatient! I'm ready to be done with it! And I am definitely less tolerant of incompetence, poor treatment and stupidity.

I left off last year right after surgery on the left side of my jaw by Dr. Borneman in Anacortes, Wa. The left side is much better. My left ear no longer feels like there is a knife in it, but it still feels a little stuffy. My hearing isn't as good on that side. My left sinuses and left eye frequently feel like I have bugs crawling around in them. I wake up in the morning with my left eye watering.

The problem on the left side was also found to be parasitic in nature, so I have been on a variety of holistic remedies for parasites, which has helped a lot.

On Oct 10, 2013, I was scheduled for surgery on the right side on my jaw (upper & lower). 

I took a short-term physical therapy assignment in Oak Harbor, Wa in order to be close to the dentist. I found a little furnished apartment close to the facility. I noticed it smelled musty, but thought if the windows were opened the smell would go away. Once I moved in I discovered that the windows were solid plate glass and didn't open. Long story really short, the smell was from excessive mold. After about a month, my shoes and the furniture started turning green.  I had an indoor air quality test done and the mold spore count in the bedroom was 87,000 spores/m3. Outside the mold spore count was 480 spores/m3. Ten times the outside count is considered abnormal. The count in the bedroom was 180 times greater.

Oct 10, 2013 came around. I was really anticipating getting rid of this nasty lump in my right upper jaw. Electrodermal testing was completed. I was asked if I had been subjected to any environmental toxins and told that I wasn't ready to have surgery. My immune system was too compromised. Surgery was rescheduled to December 10, 2013.

I had really been looking forward to returning to Florida and NOT being in the great northwest for another miserable winter, plus my work contract was up November 30, 2013.

December came around. Prior to the date of the surgery I went to Kirkland, Wa to visit Larry Ward. Larry does the electrodermal testing. Once again I was told that surgery was inappropriate due to my poor immune system. I needed at least 2 more months on with the anti-parasitic supplements.  I also needed treated for mold exposure and for a water parasite. I used tap water to rinse my mouth after brushing my teeth and the tap water in the Oak Harbor area is known for having parasites in it (per Larry). Ironically the OH city hall office has a brochure on why tap water is superior to bottled water. This area is also known to have a high level of developmental problems in children..hmm.

Surgery was once again rescheduled. This time for Feb 28, 2014. Fortunately for me, I was able to extend my work contract through March 28, 2014 and back in October I moved into a nice clean not moldy apartment on a month-to-month basis.  Unfortunately for me, I was still stuck with the frequently painful, nasty tasting, nauseating abscesses draining from the right upper jaw and the lump that I wanted so badly to dig out with a potato peeler or my tongue.

A few days before February 28, 2014, I got a sinus infection. I'm sure it was caused by the jaw bone infection. I had seen Larry a few days before it started and he had okay-ed me for surgery. I started taking some antibiotics in hopes that the sinus infection would go away. It was a little better, but I sounded horrible. Despite the sinus infection and because it was most likely from my jaw bone, Dr. Borneman and Larry Ward proceeded with the surgery on the right upper and lower jaw.

Dr. Borneman dug deep up into the worst area, but despite that once again a lump was left back there. I know that Dr. Bornamen went far enough back as a stitch was in the middle of the lump. The lump is way back on the right where my wisdom tooth was, but the lump extends up into the roof of my mouth. I like the roof of my mouth and would like to keep it.  The thought of having it dug out doesn't excite me and the lump appears to be shrinking on it's own.

About 3 weeks ago, my stomach got really upset. I could taste the drainage from the lump. Everything tasted bad including water. It gradually got worse, to a point that I was not able to digest anything. Usually when a big abscess drains, I get sick to my stomach for a couple of days and then throw-up.  This time, it was the other GI problem. I went to a walk-in clinic, because Larry Ward was booked up. I had lab work done and gave stool samples.

As always with me, nothing showed any problems. I am the picture of perfect health, even when about to die.  Sounds dramatic, but I was to a point I couldn't even drink water without upsetting my stomach. I was so dehydrated that they had trouble finding my veins.

So the doctor tells me that everything is fine. I'm like, but I can't even drink water. So as an after thought she put me on Flagel, a pretty potent antibiotic.  It took several days for my stomach to get back to feeling almost normal. It also seemed to have helped my sinuses on the left. I have a fear that it really is parasitic and the antibiotics are only a temporary fix, since I am 90% sure that it was caused from drainage of an abscess. Of course when you say things like that to traditional doctors, they dismiss it.

When I think about it, I get really annoyed with the fact that this has cost my medical insurance over $250,000.00 since the onset 5 years ago. Plus at least $50,000.00 out of pocket for me, when it literally could have cost about $3600.00 if I had known about and just seen Dr. Borneman to begin with and if he would have removed the entire lump the first time.

It's not just the cost. It's really been a loss of 5 years of my life and nearly a loss of my life due to the incompetence of mainstream medical.

For now, I have faith that with more time, the right side is going to continue to get better. The left side, I don't know.  I will give it until next spring. If it is still a problem, I will see Dr. Borneman again.

I'm leaving Washington finally now and heading back to Florida. My work contract ended and I wasn't able to extend any longer, plus I was ready to move on.

I have decided to take a break from physical therapy. I am exploring being a travel writer/blogger and photographer. It is a long drive back to Florida. There is a lot to photograph and a lot to write about.

It also is providing me a much needed break from dealing with other people's pains and problems. Taking on the energy of others that are in pain, is very fatiguing when you are fighting when you are trying to heal yourself.

If you would like to check out my travel blog, it is www.smalltownreview.com or my photography site is www.dmhallphotography.com.  Both businesses can be found on Facebook too.

Thanks for reading.

Surgery #5

Yesterday I had surgery #5 to remove necrotic bone in the left upper jaw and left lower.  The lump I had in the left maxilla came back since the last surgery in Jan 2013. 

This time the surgery was different.  It was completed by a biological dentist while having electrodermal screening done.  The electrodermal screening provides biofeedback.  It takes the guess work out of finding the margins of the infected and/or necrotic bone, so that the doctor is more likely to remove all of the bad tissue. 

Electrodermal testing also indicated that my infection is parasitic in nature, which is why antibiotics did not stop the destruction of the bone or stop the infection.

Most likely the parasites came from sand flies.  Having lived in southern Florida for the last 16 years, sand flies are an issue on the beaches.

I; however, rarely went to the beach. I worked a lot and had a pool, no reason to go to the beach.  Just this one time I went for a photo shoot. I had completed a 5 day, 300 mile charity bike ride six weeks after having a radical hysterectomy for cervical cancer.  It was an honor and privilege to have my photos taken for "free" for the non-profit's magazine as over 1.2 million magazines are printed and distributed.  Neither the photographer or I remembered to bring bug spray.  We spent nearly 3 hours getting bitten by sand flies.  I was covered head to toe with bites.

You have seen one of these photos.  It is my favorite photo of myself.  I was strong, vibrant, energetic and unstoppable.  It is my profile picture.  It is the same picture that I look at to remember how I used to be..and it is most likely the reason I have been fighting for my life for nearly 5 years.  That "free" picture has cost me over $200,000.00 in medical bills and still counting.  Ironic... 

So now I am being treated for the parasite as well as really focusing on my diet to improve my immune system. 

I will have surgery again to the right maxilla and mandible in Oct.  And then I hope to be done with it! 

I have only made it this far though by persistence, holistic medicine, IV vitamin infusions, vitamin C, probiotics and other supplements.  If I had followed the advice of the mainstream doctors, I would have died 3 years ago.

Still fighting..

It's been quite awhile since I posted, thank you all for your comments and concerns.  I guess I was just trying to live and not fixate on the symptoms.  It's reached a point now that I can't ignore them anymore.

Like all chronic illnesses, I have good days(months) and bad ones. Right now, the bad are overriding that good.

From July 2012-Oct 2012, I was doing pretty good.  Had good energy.  Was still fighting the lump in the right posterior maxilla and it's nearly perpetual drainage, but doing well.  Somewhere around Oct  2012, the area of the left posterior maxilla, suddenly got worse and a lump developed.  I went back to Dr. Berger and had surgery on it in Jan 2013.  I wanted it removed, before it got as bad as the right is. I really thought he got the entire lump.  My energy was great for a few weeks, but, since then it's been an overall gradual decline, with a few good days to fool me in between. 

The last 2 months, I have been worse than I been in a long time, like since Dec 2010.  Several nights, I have gone to sleep wondering if I'm going to wake up the next morning.  Despite this I wake up in the morning, force myself out of bed (my bladder generally gets me up..lol..), go to work and have to pretend that I am fine.  I spent 3 weeks really dizzy, then moved onto the acidic drainage from the right maxilla making me nauseous and belching to stabbing gallbladder pain. Which thanks to this I had to have my gallbladder removed, so it shouldn't really be hurting.  Then in the last two weeks, throbbing pain in my left lower jaw that moved into a knife in my left ear and a sinus infection.  It was very weird.

And now to make a long story short, I just feel like crap and have no energy.  The lump on the right maxilla is draining, the lump on the left that was removed in Jan this year, has grown back. The left lower jaw has suddenly become worse causing me to not be able to hear much out of my left ear and I have an occasional knife in my left temple.

Yesterday I went to a biological dentist in Anacortes, WA and had Electrodermal testing done.  It was interesting and confirmed all of my problems.  (I wanted to say "I told you so", but I behaved).  It was recommended that I have surgery on all 4 areas, while they complete the Electrodermal testing to make sure that they get all of the dead or infected tissue out.  It sounds like a possible end to all of this. If I didn't feel so crappy and weary, I would be overjoyed.  They also referred me to a holistic nutritionist to help with the gallbladder and sluggish liver issues that I'm having due to the perpetual battle with all the toxins in my body and to help rebuild my immune system prior to more surgery.

So this morning I dug out some leftover antibiotics and put myself back on them so that I would make it through the work day, find some enthusiasm and have the energy to continue the fight.  I feel a little better already.  I know a holistic doctor probably would not recommend the antibiotics, but I need something to prevent me from keeling over before I hopefully finally get real help. The antibiotics aren't going to stop the disease, they haven't so far, but they do generally help give me a boost through the worst times and to be blunt, prevent me from dying or feeling like I'm on the brink.

If you were to run across me, you'd probably just think I'm a little fat (50# weight gain thanks to all this), very white (pasty,pale), but healthy middle age female.  If you were to happen to say "how are you today?"...... "I'm fine"...I'm a good faker.


Thank you for reading..I wish you the best and hope that you find good, effective treatment for the problems that you are experiencing...

Ugh..will it ever end

I know that I am much better than I was in December of 2010 when I was septic and on the edge of a six foot hole in the ground, but lately I have had one abscess after another drain.  Right now, one's not even waiting for another to finish.  I have 4 open abscesses, draining crap right now. It is so nasty, so wishing I could dig the remaining lump out of my right maxilla.  My right and left mandible are also jumping into the game and have abscesses. 

A couple weeks ago, I went to the oral surgeon for him to look at a place in the left mandible.  He actually saw it, for a change.  Although I think he normally sees and feels things, but acts like he doesn't.  Anyways, he said it looked like I had traumatized the soft tissue somehow and if it didn't heal up to come back, but he wasn't sure what he would do with it... It's healed up, but not right, but why go back if he needs to be told how to fix it. 

For 5 years, I have been trying to move to Washington.  In October I merged my business with another and next week I am heading west.  I am hoping to find someone out there with a brain.  I'm thinking I will start by going to the University of Washington dental school to get my teeth cleaned.

All I can say, is may I please have a mouth full of abscesses, like I have now, when I go.  That might get their attention.

A month later:

I went back to the oral surgeon about a month ago and had the last tooth on the top and bottom on the left extracted.  I was having pain in the lymph nodes in my left axilla, groin and behind my left knee.  This pain has mostly subsided since the extractions.  My energy is almost back to normal.  I'm still not quite myself, but the improvements have been dramatic since these extractions.

I have a very small spot on the right lower jaw where the bone is almost coming through the gums.  Last week I went to the biological dentist to see if he would smooth it out.  I think it is the key to getting the rest of my energy back, but all, Dr. Behm and all he did was argue with me.  He did say that he would do it after literally arguing with him for 3 hours. By then he was being so reckless and he couldn't seem to put his finger on the right spot and  I decided I didn't want him doing anything.  So I left. I have some regrets now about that decision.  I'm going to give it 2 months and see what happens.

The ironic part of all of this is how irritated doctors get when you self diagnosis and self treat, but they have left me no choice.  I have literally seen 80 different medical professionals and been misdiagnosed by 78 of them, in the last 2 years and here I sit treating myself with the ETPS machine, massaging my own jaw muscles, taking left over antibiotics when an abscess drains, taking liquid vitamin C, rinsing with iodine water (2 drops to 8 oz of water) etc, with literally no medical supervision other than my own at this point.  Yes, 80 medical professionals and I don't have a doctor at this point, not even a GP.

I have no doubt that I would have died a year ago, if I didn't have the medical knowledge that I have and the drive to press on, even when no one was listening to me.