Enough is Enough...

1.5 years it has taken me to get the courage to see an ENT again.

Thirteen days since I saw an ENT.
Thirteen days since I was told that my left ear and head pain is not an infection, but possibly a tumor
                  (but more likely me just being a crazy fruitcake or was so implied)

Thirteen days, four phone calls to the ENT office with only one return phone call where the person calling didn't leave her name and only left a message telling me to call them back. 

Two phone calls to them since then.

Zero return calls from them since.

Zero referrals for a CT scan..

A million tears shed today before work and after work from frustration with the horrible quality of mainstream doctors in America!!

Do I think it's a tumor? Probably not, but WHO KNOWS. I NEED A CT SCAN or MRI to figure that out and I have had cancer before that was bad enough that my abdominal lymph nodes were double their correct size.

My current ear and head pain, pressure, nastiness started about 1.5 years ago. In this time I have seen a family doctor once for a thyroid med refill and antibiotics for this problem. And I have had jaw surgery on the left side, but that was with a holistic dentist, so self-pay. So in 1.5 years, I have paid at least $3600.00 in insurance premiums for about $100.00 of treatment, what a waste! I don't think it is too much to ask an ENT to do what they say they will do and order a CT scan when I am the one paying the premiums and paying my deductible. I will be billed a co-pay to see him and my insurance is going to pay him...should I not get something for my money? IN A TIMELY MANNER?? It took 3 weeks to get the appointment and now two more weeks and no referral for a CT. COMPLETELY UNACCEPTABLE!!!!

So today I went to see a GP. Once again a nightmare!

I feel like I am back to square one! Six years ago or something like that (I've lost count) when this freakin nightmare started. The doctors are once again writing me off as a crazy person with "facial pain" of unknown origin. Then they wonder why I am emotional. I am so sick of wasting my hard earned money on idiots!!! The one today actually said that the holistic supplement therapy that I have taken for the parasitic based infection that I had was probably a placebo effect! REALLY..!! I was on high doses of antibiotics for well over a year and all they did for me was kill all the good bacteria in my gut, give me reflux and prevent me from dying. They didn't fix anything!  I didn't start getting better until I started the supplements for parasites.  I told him that the only reason I switched to holistic was because mainstream doctors don't listen.

I am back to the point of preferring premature death over seeing another mainstream doctor ever again in my life!!   With that said, supposedly he is going to encourage the ENT to order the CT.. So I am going to have to continue to play the game.  I'm so ready to say "GAME OVER"!!

New Age Torture...

It has been three months since the last surgery on my jaw. My jaw has been better although I still have one spot at the angle of my jaw, a little too deep to get to through my mouth. Otherwise my jaw has been doing good.

My other symptoms are unchanged. Possibly worse. Some days worse than others. Some nights I don't think that I am going to wake up the next morning. Some nights I beg and pray to God that I don't..

I continue to have stabbing pain in my left ear. I have worked on my TMJ with ultrasound and stretching. My jaw is looser, but the pain did not subside. So I am quite sure it is not TMJ dysfunction. I have previously been put on antibiotics (twice) for the symptoms. They resolved temporarily. I have tried a lot of holistic treatments, also with temporary relief. Last week I tried a supplement that I have previously used to promote lymphatic drainage and then used Ibuprofen too (which I rarely take), it amazingly helped dramatically  Sounds great, right? NO I had finally caved and made an appointment with an ENT. And when you see an ENT, you want your symptoms to be there or they really don't believe there is a problem!!  The break from the symptoms was great, but the timing couldn't have been worse!

Where I am working right now, medical care is limited. There is one ENT that travels to this area once a month. I didn't bring my car with me, so it is not easy to leave this area. I am working 5 days a week and have my own patients to deal with, so time off is very discouraged. So like I said, I caved.

I went to the only option...he barely evaluated me. Didn't take vitals. Briefly looked in my nose, ears and mouth. I told him that my antitragus was swollen and got an anatomy lesson on the neonatal origination of the folds of the ears.

Then he told me that there is "NO way THOSE ears are infected".  Ok yes I am a Q-tip abuser and I have been trying lots of holistic remedies in my ears. You could eat out of my ears!! Then he said that I needed a temporal CT. I asked what the CT would be looking at. I was trying to find out if it included the internal auditory canal and what structures would be seen. Instead he said that he would be looking for a tumor. Well okay so whenever a CT is done, ultimately they are looking for a tumor or other abnormalities. The response did not surprise me, except it wasn't what I was asking and didn't answer the question. I pushed further about the internal auditory canal. Then he said an audiogram would find a tumor in the internal auditory canal. He then proceeded to carry on about audiograms, so I asked if he was still going to order the temporal CT. He said that yes I needed both. I told him "great this will be so much easier to deal with when I know for sure that nothing extra was growing in my head".

I left, went back to work. With in 2 hours the audiologist called me and scheduled an appointment. She seemed to know that I was going to get a CT also. I scheduled the audiogram for next week and then I waited. By Monday, I still hadn't heard from the hospital to schedule a CT. I waited until later in the day and then called the doctor's office. They told me, that the doctor's notes weren't done yet. Ok, I'm in the medical field, I understand being overwhelmed by notes. So I asked them to make a note so he would not forget to order the temporal CT.

That was Monday, this is Thursday and I still haven't heard from them.

WHAT kind of person/doctor does that?? Who tells you that they know it is not an infection, it's likely a brain tumor of sorts and then doesn't order the CT scan that could rule it out!

I am so frustrated!! How can one person have such bad luck with doctors???

So I went and made an appointment with a local family doctor for next Wednesday and I guess I will call the ENT's office tomorrow.

However, if you are a doctor and reading this, all I need is a referral for a temporal CT.

Here's my current symptoms:
-Pain, pressure and fullness in the left ear, feels deep inside
-Swelling and redness of the left antitragus
-Pressure and sometimes pain in the temporal area of my head
-Tingling in the temporal area that intermittently goes into the left eye
-Congestion and swelling of the sinus on the left, all the way around the left eye
-Intermittent blurred vision and hearing loss on the left
-Terrible memory
-Intermittent difficulty forming thoughts
-Soreness down the left side of the throat
-Itchiness of the throat and left eye
-Waves of severe nausea, that just started in the last two weeks
-Possibly a low grade temp
-Possibly swelling in the left face
-Pressure below the ear increases pressure in the ear, feels like fluid displaces into the ear or the tissues around the ear.
-Intense sensitivity to noise in the left ear
-Sensitivity to foul oders
-Left eye waters
-Fatigue that is only cured with caffeine.
-I'm miserable...

If anyone can help, get me a referral for the CT that would be great.

If anyone knows a competent ENT or neurologist in the Anacortes, WA to north Seattle area that is experienced with osteomyelitis patients it would be helpful.

If you would like to tell me your problems, please wait.  I feel for you, really I do, but I do not have the mental energy to take on your problems. I am barely dealing with my own..

Thank you for reading..

Karma..

A follow up on my last post.

At the last facility that I worked at there was one particular employee that treated me very poorly. Overall my co-workers there were the most disrespectful that I have ever had the displeasure of working with, but there was one in particular that was just evil and vengeful on a regular basis. For the most part I ignored her and the bad energy. Anyways long story short, I found out today that while she was on vacation recently she fell and broke her knee cap...KARMA..I wish I could bring myself to feel badly for her, but I can't...

I try to go out of my way to be nice to people and they still treat me like crap. I'm fed up with it, I feel like crap and my patience with mean people has run out...why can't we all just get along..

7/15/15

Prior to getting cervical cancer in 2008 followed by 6 years of fighting osteomyelitis of the jaw, I was fit, healthy and got EVERY job that I ever applied for. Hmm..coincidence? (I think not..)

Last fall I returned to Florida and had several job interviews and now in the last few weeks, I have had more in Washington. The funny (ironic) thing is that during the phone interview all of the potential employers are excited to meet me because I have an impressive resume. It also helps that my business, which was primarily me, was voted best in the area where it was located for 6 years in a row.

But then I go to the interview... I'm neat, clean and dressed professionally. but all of a sudden my skills, talent and resume no longer matter, only my waist size does. I don't look like Barbie PT anymore. Frankly some of the employers have been flat rude to me in person, others just don't bother to call me or email me to let me know their decision. (Also rude).

I want to shake them and say don't you know that I have been sick for 6 years!!! But you can't say that, because then they will just think OMG my insurance rates are going to go up or you are going to miss work. Both thoughts also unfounded, since I see primarily holistic doctors that don't take insurance and I go to work. I am on time. I never call in sick. I do a great job. My patient's love me. I am still funny and my patient's never know I am sick.

Some days I can barely hold myself upright, but I am at work (thanks to caffeine). That's the best I can do!

So yep, I am fat now but somehow I AM STILL ABOVE THE GROUND!!  Despite the lousy medical care that I received at the onset of the osteomyelitis which probably caused me to gain weight, I am still here to call you all out!

If you happen upon this, you know who you are and should be ashamed of yourself. How dare you judge me for my weight when you don't know my story. Most of you are healthcare providers. You should know better than to judge when you don't know someone story and struggles.

I've fought and struggled a primarily silent battle with no one to talk to and no one to support me for 6 long years. I have struggled to hide my problems through my work days only to go home and collapse into the couch in pure fatigue, pain and exhaustion after having had my energy sucked out of me by my patients and their problems.

I never play the single mother card, but here it is. I can't not work. I have a son to support. Yep he's old enough to support himself, but so far he isn't and he depends upon me. So it doesn't matter how I feel. I have to be at work to pay the bills.

It's good that there are still traveling therapy jobs that depend upon phone interviews only or I would be unemployed and homeless! (Or I could stay where I am at now since my current boss would like to keep me).

With all this said, I want to say THANK YOU to ALL of the UNETHICAL employers that have interviewed me in Florida and Washington, that don't seem to realize that DISCRIMINATION is ILLEGAL!

I am glad that I am overweight, so that your true colors are seen right upfront. I would NEVER want to work for someone that judges my abilities as a physical therapist by my waist size not my resume and references.

You all should also know that KARMA is a not good to people that treat me bad.  It's nothing I do, I am just taken care of by higher powers.  For example one employer treated me very unprofessionally while I was in Florida. It was a neurology group practice.  They are no longer a group and it took them 9 months to find a therapist to replace me..karma.

So if you are one of these unethical judgmental schmucks that have determined my ability to work as a physical therapist by my waist size and then have lied to me about choosing a different therapist for your clinic when there is no other therapist... you may look forward to business struggles in the near future. after all karma is a b....

Thank you God for watching over me, taking care of me ... and those that seek to harm me...:D

PS: What all of you don't know is that I am doing much better now. My energy is improving. I wear my FitBit every day, average walking 29+ miles a week and log all of my calories. I am going to beat this too and when I have I will be back to being thin and fit, but you will still not have a quality therapist...Need I say it again... karma...:T

Seriously..6/30/15

Last Thursday, I had the 10th or 11th debridement surgery on my jaw. So I have 8 -10 stitches in my jaw on the left side. The left side is where I typically chew because I have more teeth remaining on that side. This means I have to pretty much gum my food on the right or chew with my front teeth (yeh don't watch me eat right now, it's not attractive).

So you would think that I would have been able to drop a couple pounds over the last few days. NOPE, not me.  I gained the 6 pounds (!) back that I had worked so hard to lose over the last two weeks. Seriously I didn't eat THAT much jello!  So frustrating!!!

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!