Dr. Ponti and Ergonomics

Saw Dr Ponti yesterday and she is just a wonderful extraordinary doctor. There is always a plan. She agrees the swelling is down a lot and says continue PT and if not making great progress then she wants me to see an orthopedic specialist.

Meanwhile, we all agree that my laptop is not set up to be ergonomically correct and so must remedy that, maybe getting a keyboard to attach to it so I can have hands lower and shoulders not raised up.

I am working on a testomonial for her. Something like~
Dr. Ponti is an extraordinary doctor. Professional, compassionate, a good listener.
My own health issues are very complex but Dr Ponti has never been impatient or overwhelmed. She asks excellent questions, does thorough exams, and always has a plan. I am so grateful to get to be her patient.

Her office staff is cheerful and cordial and organized and very capable. I have been able to get in on short notice when necessary.

Dr. Ponti has consulted with my neurologist and helped maintain continuity of care.

If you are not absolutely happy and thrilled with your current doctor, I urge you to schedule an appt with Dr. Ponti. Your health is too precious. And life is too short.

Physical Therapy 2 and Hurricane Irene

Saw matthew at Crest Physical Therapy today for the 2nd time and oh it is both painful and so helpful. Good pain like intense massage pain. And I think this was long overdue. That the injury to my right shoulder and back from four years ago finally led to this, so now where I need to regain strength is in getting back and shoulders stronger, posture better, shoulders down and not up, so my poor neck is not doing all the work.

After my first session, the next day I had more hand strength than I had had in ages! Scrubbed some pink marker stains off the bar which had been there for weeks and which I had found immoveable.

For years my hands have been like cotton gloves taped on to sticks attached to a scarecrow. Terrible and weak and leading to clumsiness and frustration.
But I am getting better.

Less thumping in both sides of head. Less right eye twitching.
Still stabbing sharp neck pains and it doesn't like me to do anything involving arms, but still, this is progress!

We are preparing for Hurricane Irene. It is interesting to me how much hurricane preparedness for me means buying a lot of chocolate.
By yesterday all the stores were empty of water and batteries.
It could be quite the weekend.

Kittens in the Garden

On Monday the 22nd, the day the house went up for sale and my mate's niece came out of surgery and I had my first PT, Shaka brought two kittens to the yard.

First a black one with a white heart on its chest.
And then a black and white one.

I named them immediately.
Nokie and Eadon.

(after the niece and the realtor.)

8-22-11 Picnic and earthquake

We took the puppy for a walk and a swim and a picnic at Thompson park in Lincroft while 40 realtors had lunch at our house.

We returned home after 1 and just before 2 an amazing earthquake made the house rock adn roll. It was a 5.9 centered in Virginia. Wow the earth is alive.

8-22-11 First Physical Therapy and House Goes Up For Sale

So glad i went. had threatened to scream if he touched me but Matthew the PT was wonderful and i enjoyed the massage aspects and also when he tractioned my neck using his arms. my neck still doesn't like any heat, doesn't like ice, doesn't like ibu but it liked PT and it likes arnica.

I have been given some chin tuck exercises and told to take it easy and come back on Friday. Very happy to go back on Friday.

So he thinks it is C-5 and C-6 that are in trouble though says the eye twitching thing would usually originate higher up so he is not sure.

But i am feeling hopeful.

The Hopeful Hunchback

That's me! The Hopeful Hunchback.

Looking for some bells to ring...


(Finished 6 days of Z-Max yesterday (Z-Max, round 2)and so it is still supposed to help me days 6-10, meaning next four days) and then I think Dr. Hopper wants me to start it yet again.

Also, physical therapy for neck and spine starts tomorrow...


(8-21-11)

Joy and Despair (my fb posts)

Joy~I wanted to share with you that for the 1st time in 4 years I just went an entire month without a crippling migraine! I credit the triptan Amerge and the antibiotic Zmax. (There is some suspicion that I have Advanced Lyme Disease.) I also credit Miracles!

Despair~I felt so good for 2-3 weeks that I resumed normal life (gardening, mopping, etc) and blew out my spine so that now the top portion looks like a feverish goose egg. Ouch. Ow. So today the doctor and then the spine x-ray. Physical Therapy starts Monday. Since meds don't do much for me please send your favorite body-numbing cocktail recipes. What cheers you up?


Tonight I am shopping online for neck disc replacements. I wonder how hard they are to put in? I could be bionic!

Neck has gotten slightly better. Only medicine today was a Bellini! And now a nice thunderstorm and the luxury of being in a cozy dry house looking out. Thanks to my Mom for reminding me to watch Long Way Round in which Ewan McGregor and Charley Boorman ride their motorcycles across Mongolia and Russia (and Alaska and Eastern Europe). I am in Love with the whole Adventure.

trapped in a broken body

So tired, tired, tired.
I'm trapped in a broken body.

And Now the Neck

It's Not Fair! That is all I can Scream.

I am now the Hunchback of Fair Haven.

I felt so good for a couple of weeks I went back to normal life, like gardening and mopping, and blew out my back. My upper neck/back. Like that bone that connects to head to the body just became a giant swollen goose egg.

I gave it two weeks and it didn't get better with ibu or ice or rest or prayer or denial so I went to beloved Dr. Ponti and she said basically Oh Dear. Increase my ibu, ice it, start physical therapy, rest, limit certain activity, then there are narcotic meds, there are injections into the area, there is time, there is surgery.

She wanted an MRI but since I just had a neck MRI a month ago I just could not do another one. So we agreed to an x-ray even though we both knew it wouldn't show much but such is the way of compromise and the need to Do Something.

I start physical therapy on Monday.
I am using the arnica cream and the arnica homeopathic pills.

Am becoming an expert on herniated disks in the neck and other un fun internet topics.
But thank heavens for the internet.

And please neck, can you heal? Please. Please.

8-19-11

ILADS

http://www.ilads.org/lyme_disease/treatment_guidelines.html


This link has an incredible document written by Dr. Burrascano.
Something like 32 pages? I print it and can only read tiny bits at a time,
like a peep show, like watching a horror movie with your eyes over your hands but you can see through the cracks between your fingers...

The Neighborhood and The Realtor's Friends

The realtor Elaine has two friends who are very will with Lyme Disease.

They are both at home getting iv antibiotics, sitting in their living rooms with drip lines.

They are getting better, she says.
They are slowly getting better.


I recall when we moved here five years ago I would see articles on Lyme Disease and sometimes benefits for people with Lyme, like marathons to raise money. A local woman who now lived in a wheelchair. I paid attention and was sorry and wished these people well but of course didn't really recognize any relevance to my self.

(though we had two dogs go down with Lyme)

I guess that all along I assumed these Lyme sufferers had not searched so long and hard for diagnosis but had just had a very bad run of luck not experiencing the usual benefits of treatment or that they had other co morbid conditions that made the Lyme so debilitating. I had no idea that "This" is what Lyme might look like. It might look like me, limping and almost falling down after walking half a block with the dog. Me as a zombie.

That is what Lyme looks like, a Zombie disease.

And I am still not sure if I have Lyme, or what this is.

I hope this next course of antibiotics will help revive me.

8-14-11 Thunder and Lightning and Beautiful Rain and time to start the Z-Max again

Oh Thank You for the Rain!

A night of rain and a morning of lush green rain. How blessed.

And I decide I will start Z-max again today.

I have managed to go a month without a migraine and that is Incredible, the first time since 2007 that has happened.

But I still have headache, and weird crackling, and my left knee began to blow out in the last few days and so dramatically, that in less than a day I went from being able to walk for half an hour to then being able to only get down half the block before I am limping and in pain and must turn back.

I feel exhausted and cranky. My right eye is crushed down. Something messing with the cranial nerves.

The upper spine is in a lot of pain, that place where my head and neck meet between the shoudlers or just above is on fire and hot to the touch.

And with the pain and the fatigue and the blear and the blurriness, I cannot get anything done at all.

And yesterday I could not see out of my eyes, so filled they get with floating bits and they can't focus. They are so tired, like they are covered in clouds.

Like they are filled with snowflakes of darkness.

8-13-11 Rest In Peace Mister Barham

You were here and then you were gone.

(8-8-43 to 8-13-10)

And in between there were many many delicious milkshakes, each of which you declared the best milkshake you had ever had.




I had told myself I would be happy a year after he was gone,
but then I realized the nonsense of that, and what I had really planned on doing was just giving it a year for the dust and tears and ashes to settle, and then I would make a new plan. Establish some new goals. Get on to the next phase. Go on to the next life. There is still life in me. Hooray!

8-12-11 my hunchback and the fiery bear of pain

I have a very nice life and now I am going to take some ibuprofen.

For my upper spine pain.

Mu hunchback hurts.

It has hurt for two weeks. Think it was normal wear and tear activity from mopping and vacuuming and housecleaning and gardening and moving and packing but whenever I get a normal mild injury now it flares into a fiery bear, like my joints and muscles become bears on fire.

Poor bears. Poor me.

Maybe I should also get back on magnesium and vitamin D for the body pain?

8-11-11 update of decline

Not only is there crackling head pain and the neck/upper spine that has really really hurt for days plus intense burning muscle pains and aches in shoulder but there is pressure in right side of head and now darn-my left knee is trying to go out again.

I failed at trying berberine. Only managed a day of it, maybe started too late and am not dedicated enough. Hope I will try it again some time.

So, time to get back on Z-Max. Two weeks away from antibiotics and I am getting bad again, damn it.

Damn It.

The Olympics of Moving

8-9-11

Here is how the process of moving/packing/relocating from New Jersey to Texas is going. It's the Olympics and we trained for the curling event and then we show up and we are immediately put in a bobsled.

Whooshhhh...

and we are like...."But we trained for the C..U...R...L...I...N...G....!"

3 weeks without a migraine

8-8-11

For the first time in 4 years I have gone three weeks without a crippling migraine. I credit a new triptan (Amerge) but especially antibiotics (Z-Max). Praise azithromycin! Praise miracles!

There is some suspicion that what I have is Advanced Lyme Disease.

It has only been three weeks without crippling head painbut it's like an eternity~
a blessed Eternity!

Migraine, where are you?

August 7th, 2011

I wake up on my 42nd birthday and am happy.

It is Day 3 of my period and I feel pretty decent.

Migraine, where are you?

Day 3 of my period and I haven't taken a single pill.
Not ibuprofen, not a triptan. Nothing.

Oh, I have my aches and pains and crackles, but I don't seem to have the usual meningitis meets encephalitis meets migraine meets period.

It is the Most Miraculous Miracle!

And I'll take it!

Blessed is This Day!

what Z Max treats

Spectrum of Activity
Azithromycin has been shown to be active against most isolates of the following microorganisms, both in vitro and in clinical infections as described in the INDICATIONS AND USAGE section.

Aerobic and facultative Gram-positive microorganisms
Streptococcus pneumoniae

NOTE: Erythromycin- and penicillin-resistant Gram-positive isolates may demonstrate crossresistance to azithromycin.

Aerobic and facultative Gram-negative microorganisms
Haemophilus influenzae
Moraxella catarrhalis

Beta-lactamase production should not affect azithromycin activity.

“Other” microorganisms
Chlamydophila pneumoniae
Mycoplasma pneumoniae

The following in vitro data are available, but their clinical significance is unknown.

At least 90% of the following microorganisms exhibit an in vitro minimum inhibitory concentration (MIC) less than or equal to the azithromycin susceptible breakpoints of < 4 μg/mL. However, the safety and effectiveness of azithromycin in treating clinical infections due to these microorganisms have not been established in adequate and well-controlled trials.

Aerobic and facultative Gram-positive microorganisms
Staphylococcus aureus
Streptococcus agalactiae
Streptococcus pyogenes
Streptococci (Groups C, F, G)
Viridans group streptococci

Aerobic and facultative Gram-negative microorganisms
Bordetella pertussis
Legionella pneumophila

Anaerobic microorganisms
Peptostreptococcus species
Prevotella bivia

“Other” microorganisms
Ureaplasma urealyticum




from http://www.rxlist.com/zmax-drug.htm#

Hallelujah! Thank you Dr. Hopper

August 2, 2011

A week off Z-max plus my approaching period and my head was getting worse and worse. Finally today the crackling was in both sides and there has been a lot of nerve pain like cactus prickling for a few days.
So this morning I decided the Best Plan would be to repeat what made July such a good month, which seemed to be to take Amerge for the menstrual migraine and when I got through of that to see if I could try Z-max again.

So I called Dr. Hopper this morning and they called me a few times today to ask more specifics about why I wanted more, and then just now tonight Annie called back, just as I had returned from a walk with my head all miserable and swollen and crackling, and my darn Poor Right Eye totally crushed down again so I cannot see out of it and I feel all minotaur again (until today eye had been good for weeks! I could see!) and so I was researching online what Z-Max treats when Annie called and said

she is faxing in a prescription for me! They want me to have a 30 day supply. To take 2 pills and then a 5 day supply (like the pack was) and then 5 days off. And then to repeat.


I was so happy when I got off the phone I had a huge smile on my face and I jumped up and down!

I am so Happy!

I might get my Life Back!

One month off vitamins plus no knee pain update

For one month I have been taking none of my Vita D or magnesium or anything else. It started because I got too sick with the Plague in June to have anything but tea or soup for weeks and then I decided to see what happened when I didnt go back on them right away.
Then I did the new naratriptan and the Z Max.
The point is not that I don't think the vitamins and minerals were helping because I started them last Fall and they seemed to hugely reduce my overall body pain but that even then my left knee would sometimes scream so loudly I would lie in bed praying for amputation.
Then I started those antibiotics and for weeks now, no knee pain at all. None.

That makes it sound a lot like Lyme disease to me.
The joint pain was unbelievable, like a gator attached to the leg, or a volcano exploding inside the joint.

I have been walking, and walking. Wearing sandals. Flip-flops even. Walking. On feet for as long as I want. No Knee Pain!

A miracle!

And I want to go back on iron and magnesium and Vita D some time but I just don't know. Sometimes it seems like my body wants to be anemic. That it doesn't absorb minerals. That I have side effects. That the body has its own plan.

June and July and now it is August

June was one of the worst months of my entire life.

July was incredibly Better. One of my best months of the last year.

and now here is August.

Hello August!

Happiness

What is happiness?

I am not sure I know the answer but I do know in recent weeks I have had moments of happiness and I would define them as moments in which there was an absence of pain.
And then i would find myself smiling.

Akathisia

Recent years have been so marked by an inability to sit still or find any physical peace, as if to remain in motion is to distract one self from pain too intense to bear. I stiffen immediately when sitting and must jiggle to ward off pain. Remarkably, these days I am much better in this regard. I am interested in what is happening in the brain and body during these times. There were times I was so bad for days on end it was as if I had St. Vitus's dance.

from wiki:

Akathisia, or acathisia, is a syndrome characterized by unpleasant sensations of "inner" restlessness that manifests itself with an inability to sit still or remain motionless (hence the word's origin in Ancient Greek: from καθίζειν - kathízein - "to sit" with a privative a as prefix expressing negation or absence; literally meaning inability to sit). It can be a side effect of medications, mainly neuroleptic antipsychotics especially the phenothiazines (such as perphenazine and chlorpromazine), thioxanthenes (such as flupenthixol and zuclopenthixol) and butyrophenones (such as haloperidol (Haldol)), piperazines (such as ziprasidone), antiemetics (such as metoclopramide and promethazine), and stimulants (such as antidepressants and amphetamines). Akathisia can also, to a lesser extent, be caused by Parkinson's disease and related syndromes,[1] and likely other neurological diseases. However, this may be due more to the drugs used in treatment such as sinemet (l-dopa) and less with the Parkinson's disease itself.[2] Another major cause is withdrawal from most any physical addiction, for example, in benzodiazepine withdrawal syndrome.[3] It was discovered that akathisia involves increased levels of the neurotransmitter norepinephrine, which is associated with mechanisms that regulate aggression, alertness, and arousal.[4] Though no further research has been done of yet, it may also be involved with disrupted NMDA channels in the brain, which have both synergistic and regulatory effects on norepinephrine.

Vitiligo

When I was so ill in June, the raccoon rings around my eyes, those white blue shadows that ring my eyes, spread down to my cheeks, mainly on the left side. As if I have been marked by the plague.

But I see it as a sign of a survivor. I survived that.
Like some tribal ancient marking.
Like I was in the desert, just as I was in the wilderness.

And maybe it is just vitiligo? Maybe that is what I have had all along.
And then at 42 it would spread after a plague episode?

My grandmother Nancy had vitiligo.
And so did the man who came to wash the windows and make our glass shine like it wasn't there at all.