Ice and Expectation Sept 4, 2011

Began icing neck in earnest again yesterday and it likes it, it really does.

Meanwhile, sleeping on my back or side is just impossible.
I wake up on my stomach and tell myself I must turn over but then I hear myself say, "I can't. I am sleeping!"

So, what can you do? How much arguing with your asleep self can you do?

Meanwhile, I realize I wake up each day expecting my neck to be better and I don't understand why it is not.

I guess I expect it to magically heal in my sleep.

Obviously I am going to have to change my expectation.

C 6 and C 7 herniated Sept 2, 2011

Been just having a terrible time with the neck pain.
Had PT session 2 a week ago but then went and played mini golf for about twenty minutes and then had the hurricane and then my period and a migraine all at once and so forth, and my neck was very unhappy. Cancelled PT 3 as I was on migraine meds and ibuprofen and just couldn't add anything more.

Well today was tough as i had been up all night again in pain and then forgot i had another 1600 dollars in medical bills i had to pay which gave me a deep shudder

but then i rallied and said i only have this one life i cannot give up

so i called Dr. Ponti and my MRI results were in so I picked them up on the way to PT session 3

and i must also thank my sweet mate P for being so comforting today when I was feeling so bereft

so the MRI results which recall were done a full month before my neck blew out, looked good, Except for

"C6-C7 level: There is a small right posterior-lateral disc protrusion contouring the ventral thecal sac without apparent cord impingement."

so that Is where my pain and agony is and where the heat emanates and what doesn't want to be touched and where I feel knives stabbing me

so I must have just blown that out entirely

so at least I am clear on this= Must Heal Annular Ring. Must re grow protective coating.


Last night I had begun taking cal/magnesium again because I think I need a lot more building blocks.

Matt the kind PT guy said he would ease off of my therapy today and he wants me to rest and reduce back down from 4 kinds of exercises to only 2, and and the two are just
Chin Tucks
and Postural Alignment when sitting.


The Session was good.

Then P and I went to Cranbury to drop his broken camera lens off at Cannon.
We walked the streets and were sad to see the Blue Rooster had been flooded by the hurricane and was closed. I had a slice of pizza at Cranbury Pizza, we had icecream next door, we walked at the cemetery and then browsed in the Book Worm.

Returning home I read online that someone recommends ice, only sleeping on back or sides (impossible for me as i can only sleep on my stomach) (when i can sleep at all) and bouncing on a therapy ball for five minutes a day.


I am determined to heal.


September 2, 2011

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.

Susan McCorkindale

I like to read memoirs and on January 4, 2010 I checked out her book Confessions of a Counterfeit Farm Girl from my little local Fair Haven boro library. (I know because I just found the library slip as I was cleaning up the bookshelf.)

Try as I did, I had such a hard time adapting to suburban Jersey life and I was very attracted to Susan's story. She decides to leave her comfort zone of urban NJ and move with her husband and two sons to a cow farm in rural Virginia. McCorkindale was a self confessed total Jersey Girl, (woman) professional and Mom, who seemed the twin of every woman I ran into in my neighborhood, juggling careers and children and manicures and shoe shopping. (And I apologize for my judgementalness but when I arrived in suburbia my neighbors seemed too rich, too thin, too manicured, too self involved, and they drove their giant Escalades and Yukons and Hummers in such a distracted but defensive way it was if we really were at war in white America.) And I tried hard to get past my own shallowness at not being able to get past what I perceived as other's shallowness...)

So she was like me in reverse in a way. I am a country girl at heart and soul (well early on anyway, though I love NYC and my real home is the village of Bellingham) but I started life out on a little farm in VA and I go back to that land inside me every day.

Susan's life changes so dramatically when she and her husband decide to move with their two sons to a farm in rural VA and she tells her story with so much humor you can't help but love her.

So I utterly admired her honesty and her spunkiness and her willingness to be her unapologetic self but also try a life so outside her element, and she addresses that sort of culture shock I experienced moving between worlds that don't have many geographic miles between them but are as different as heads and tails.

I enjoyed her book so much that after I read it I found her blog online,
only to learn that after the book came out her husband got diagnosed with pancreatic cancer. And recall at that time I was very very ill myself with no one knowing what was wrong and I was partly reading just for escapism.

I think I cried for her and him and me when I read how ill he was. And I had to not stick with reading her blog. I was too entrenched in my own drama of pain and medicine and disease.

And I have had that strange phenomenon where I like something, and then it ends up connected to illness. For instance, two weeks ago I read Rhoda Janzen's Mennonite in a Little Black Dress and just loved it. Then looked the author up online only to find she has breast cancer and has been treated.

Well anyway, Susan McCorkindale has a new book coming out in August! 5oo Acres and Nowhere to Hide. I am excited. I watched a little three minute clip and then it happens, she tells how her husband got sick two years ago, and he died in April. I felt like crying for her and for him.

Rest In Peace Mister McCorkindale.

This is life, attached by the muscle to death.

I am still glad we have books.

I am going to write some.


PS. I did a terrible job with this post. Let's blame my head and crooked eyesight and fatigue of the mind and hands. But what I should really say is that actually Susan McCorkindale makes me brave. I admire her. The irony is that she makes me braver about farm life. Much of my life I had both mourned and celebrated the fact that I had escaped what I was sure was my destiny to be married to a farmer. That would have been a good fantasy but the reality seemed to me that he would have been alcoholic and I would have been miserable. Lets say I saw this a few times. So I was glad to escape and find a world in which women's and children's rights were at least acknowledged. When I was a child in VA it was still legal to beat your wife provided the stick was not too large. Animals, women, and children were abused.
So I have a fear of farms. Because they happen in the countryside, where there is isolation.
But now my mate and I both face the possibility that we could give in to a dream and have some land around us as we move to Texas where land and life are cheaper. The feral cats here who have adopted us seem to be saying, Dont move to the suburbs. Take us with you and we will be your farm cats. That is their gift to us. To help us, force us, brave our dreams.

Do you have dreams you need to brave?

(photo, my first trip to Chocolate Bayou, Alvin Texas, April 2011)

Cloud Brain

I continue to wonder about environmental factors.

I have cyclical migraines wherever I go but there is this strange prickling in my head that is daily and I think only began late last summer.
It is is deep inside, so not the skin or bones, but between the bones and brain, like I grow cactus inside my head. Is this nerves? Is this? What, what is this?

I had been back in NJ only a single night when I felt the strange cloud shape settle into the right side of my head again.

It is like there is something here we breathe in. Like a strange gas, or a bloom of algae, something in the air.

My mate gets too many headaches also. He decribes a similar cloud in his head.

In the first years of it I asked all the docs what could it be? Said we had tested for radon and we had carbon monoxide detectors. I wonder about molds or radioactive countertops or that death spice smell that wafted through sometimes. In the heat of summer the house has strange ghost smells.

But no one knew what it could be, what in an environment could cause my health problems. And I have found nothing.

But two weeks ago I came back from the west and sat in the humid dark on the front step and felt the strange fog curl up like a cat in the right side of my head.

Could it be something in the ground? The air? Something that blooms in the pond?
My mate says he has seen on maps that there are undeground rivers beneath us, naturally, as the pond drains by and we are on a peninsular between two rivers.

Or is there some undiscovered gas, radon like, that no one knows and no one has named.

There does just seem to be something in the air.

It could explain why our neighbors are so very very strange, so aloof, so very Distant.

Everyone has The Vapours.

Last Dose of Zmax tonight

I loved this drug.

Took it for six days and it's supposed to still work for ten.

But I don't want to go off of it.

I have slept 6-7 hours a night.
And when I woke up this morning the glands in my neck had reduced a great deal.

I do have a return of that right sided pressure in the rear of my skull, like something is unfurling and kicking out inside of there, but still, I can see! I can think! I can imagine! I can do!

I love being able to see out of my eyes!

So we shall see what happens next.


7-20-11

temporal arteritis, cranial arteritis, Vasculitis

Something else that can cause optic neuritis.

Isn't vasculitis what I have wondered about for years?

Amazingly, steriods help treat Optic neuritis.

Oh this post. It is just so like my past three years. Constantly searching, constantly scanning, hoping, becoming a quick expert on weird things. Reading about conditions like lymphocytic choriomeningitis (a rodent born infectious virus, recall I spent years cleaning out the Virginia house and attics. Mouse life everywhere.)

Will there ever be more answers?

I am even willing to give up all answers if there can just be a cure.

Now that the Amerge knocked the migraine down to a three or four day incident, I can so much more clearly see that then what I am left with is this other condition which seems more like a meningitis or encephalitis or something.

optic neuritis

For the past week, i think thanks to Amerge and then ZMax, I have been able to see out of both eyes. This is an incredible experience. For years I have not been able to see very well, the right eye is often crushed and foggy. And my depth perception is all wacko and I just plain can't see well. I have been going around in a dreadful and pressured haze.

To be able to see for the past few days is just a miracle.

What are the things that cause such severe optic neuritis? It looks again like it is MS, lupus, and Lyme Disease that are possible causes.

I recall I began losing vision in that right eye about five years ago, before the head pains began. I went to the eye doctor and he could not find a problem though he said he could not determine how hard my brain was having to work to compensate for a tired eye.

All I know is that I can see this week and I am very very happy about it.



7-19-11

Holy Trinity

I am feeling pretty damn good.

Not that my head pain is all resolved, not that sometimes my muscles don't burn with a strange fire, but I am upright and forward motion, at a time of month when I am sometimes headed to hospital or suicide.

So something about this combo of Antibiotic plus Amerge plus Ibuprofen has done some magic. Day 4 of the antibiotics.

So I still have crackling in the head on all sides and a weird deep pain like in the marrow of my skull bones, but I sleep 7 hours and I wake and I wait for the sledgehammer and the death rattle, and instead its just like, Oh, hmm, I have a really bad headache. Is that all? And i wait. And that is All!

And I get up and do my day.

Today I posted flyers around town to try to find Miss Beezle a home.

7-19-11

Thank you Dr. Ponti, Porphyria and Hormone Results

It was as I expected, they too were under the voodoo curse that seems to surround me.

I am not saying it is useful or sane to believe that one is cursed, but when the sorts of things that happen to me happen for years on end, the mind can make no more sense of it.

So both Chris and dr. Ponti told me they tried to call me mid June and could not get through to me, that my phone would not take their messages and I did not answer.

The porphyria test results don't show porphyria.

The hormone panel shows high progesterone. Dr. Ponti says come in for one more hormone blood draw and then she is sending me to the endocrinologist.

7-19-2011

PFO

Do I have a hole in my heart?

Would this explain why my lips are so often blue?
and my feet?

Wow! Wow! Wow! UW Headache Clinic, PFO

Just as I was feeling the East Coast doctors had all given up on me, (I was actually on the other line with sweet cheerful Chris at Dr. Ponti's inquiring about my porphyria test results)my cell phone rang and there was a 206 Seattle number calling so I grabbed it and it was Alisa at the UW Headache Clinic in Seattle and she spoke to me in this beautiful fluent medical language that honestly sounded like singing. Like song.

Now by now it must be obvious that I will take hope wherever I can get it.

But please take me seriously when I say My God, This was so Wonderful. I got off the phone jumping for joy and feeling like I had won an award!

Her first question was why hadn't I been diagnosed with migraine with aura? And I said, I have no idea because I have been having aura since 2008 and it can be so severe and yet when I look at the codes all of the doctors are using it is always headache and migraine, not migraine with aura etc.

And she said yes, I can't figure it out because when I read your charts I see speech impediments and visual distortions and those are aura.

And she let me speak and explain my difficulties and to say that it has been a very hard time since 2007/2008. How the migraines were three days at a time in 2007 and then 2008 became monstrous. They stretched out until there were no spaces in between them.

She asked me if i knew about....and she said this beautiful long sound, and i said no though then when she began to explain I did know what she was talking about but I just let her explain because her description was beautiful about the heart and the brain and fetal development and the lungs and the purification of the blood and so forth...

PFO. Patent Foramen Ovale. Yes I had heard about it and a couple of years ago, Spring 2009 when my heart turned into a washing machine I wondered about it as I did research into what could be making my chest gurgle and slosh and vibrate out of rhythm and try to break loose from its moorings in my chest. But then an echocardiogram, a 24 hour holter monitor, and an ultrasound of my heart showed nothing.

But now I learn that for this test for PFO they would have to inject saline into my veins, which I had not have done of course.

So, she says that in half of patients with migraine with aura they have PFO.

But she says no one does the surgery as treatment for migraine.
And it is only for research that you can have it done and only after you have tried three prophylactics and failed.

And I explained that while Topomax had been recommended for me before, starting 2009, I had not used it as I was too sick with other health complaints and tests and trying to get other pains under control to work on that.

She asked if I was using the hydrocodone and I said No, I had started Amerge and that was helping and that beyond that I just had so many different types of weird head pain and something changed radically and for the worse in September 2010.

She heard me. She talked about tests they can do. She said they would see me. The front desk would call me.

And I feel like Wow. Thank you. Thank you.

And that I have, since Nov 2008, felt that there was a major circulatory aspect to the illness.
And now I am thinking maybe the antibiotic is helping me this week because it cleans the blood a bit?

I have no idea. I just know that this past week I have felt better, between the Amerge, the antibiotic, and the ibuprofen.

The future is looking brighter, in a nice non glaring, pleasantly shady way.

Science, Science, I love Science.

Crackly Head, Feral Kittens

7-17-11

Day 3 on the antibiotics

No adverse reactions

The first day it seemed hugely helpful, pressure reduced in head, crackling settled down. Day 2 seemed good too. But by this, the third night, the overall crackly head feeling was back (though not very bad) and there is slight build up of pressure in that back right side, and I laughed once tonight and the nerves in the right side of my head just screamed.

What to do? Continue to grit teeth and bare it.

Am up late listening to the bullfrogs.
And trying to figure out how to find a home for Miss Beezle, the feral kitten born last Fall, who survived 5 days 40 feet up a tree, and then the blizzards of winter on her own, was impregnated by Goodness this Spring, gave birth a few days ago in the neighbor's yard, and since then has been at our back door nonstop screaming for food and attention. She is just a kitten herself.

Hope

Hope.

I would never give up hope. Would you?


7-16-11




(photo Semiahmoo Spit, Blaine WA)

Myalgia

7-15-11

Severe, whole body pain, started about an hour after I took the Z Max.

But I can't blame the pill. I have off and on severe all over body pain, dating back years.

This time it has come on like a serious flu.
Even my skin hurts.

It hurts to sit down.
To stand.

Legs, arms, back, butt, neck.

Strangely after I iced head today then neck hurt worse.

I also remember this hot and pained feeling when I went on the steroids.

And it is not just the muscles, the bones hurt too. And inside the bones.

I just hope I can feel better tomorrow.

Please.

Noises, pain, pressure in Left side of head and why I am angry

Well I am angry because I am in so much pain. And no doctor has diagnosed me.

So is it some strange raging infection? It has spread. It is now in the left side of my head also.

And it moves, and when it moves I feel like throwing up. And it feels like pressure, and also fizzing. It is a little crackly, and prickly.

There is some war going on in there.

Some serious dis-ease.

Bacteria? Fungus? Virus? Parasite?

Whatever it is it also has all the glands in my left side neck swollen up, and it wants to pinch down my nerves, make me twitch in left side of face. What is this thing?

7-15-11

The Mysterious Case of Dr. Raab

She vanished on me. No response to the faxed letter Dr. Ponti sent her on June 7th.

No response to my mailed in letter of June 16th asking what do we do next, what imaging can be done for right side head, explaining I was in severe pain with cycling neurological deficits, could she please follow up on the porphyria tests, Help!

Silence.

Until July 8th when I received a strange disconnected voicemail from her. Just saying call her or come in to see her if she can ever be of any help in the future.

As if the present does not exist?

It was the oddest thing.

I like her.
Why the total disconnect? What have I done? What could I do to make myself a better, more attractive patient so these doctors care? I pay my bills. I show up. I try their treatments. I come back.

Is Everyone Else also under The Voodoo Curse, ordered Not To Help Me?

Still No Porphyria Test Results 10 plus weeks and counting

Was it just a scam? This genetic testing ruse?

I am emailing Mt. Sinai Genetic Testing Labs again today, as I do once a month.

Since results were supposed to take 2-4 weeks.

And we are at 11 weeks.

I think I have lost confidence in the lab. And their results.


Update. The woman at the lab emailed right back and said she thought the results were faxed to my doctors several weeks ago.

What is this?! Doctors? Hello?

Ice Woman

I return to ice. It is as if my head has suffered some insane sports injury.
Today the ice helps again. And a few sips of coffee.

I have found an ice pack that conforms better to my skull than the one I was using yesterday. This makes a big difference, the level of contact.

Meanwhile, I have almost entirely given up chewing ice, as it seems like there is no good padding in my head and bones rub bones when I chew hard things.

Ice, in the right places.
Very Nice.

Pill Friend

7-15-11

Bad bad bad bad bad head pain. Right Sided. Left sided too.

So what do I do? What do I take?

I can't get through this alone.

What pill friend will I take today?

Can anyone help me?

I decide to take a fioricet.
It gives me an hour of feeling better. Thank you pill friend for that hour.

Azithromycin

7-14-11

I want to start it but i am so chicken.

7-15-11

hot flashes in my muscles

severe pressure and pain in LEFT side of head, moving around,
just like the right side was all Fall, Winter, and Spring

it is like head has a severe fever, hot to the touch, burning, feverish, but the thermometer shows nothing

twitching right arm

madness, and anger. What is this?

9:45 pm I start the ZMax. It hopefully will be helpful and if nothing else, perhaps informative.

Right Sided Head Pain Roars/Gelato Spoons of Codeine Syrup

7-14-11

So what is this? The "migraine" is gone but I have that severe right sided head pain. Pressure, like my head and teeth will blow out. What is this and how do I treat it? It seems impervious to everything. Last night I tried ibuprofen and today aspirin. Ice packs and hot packs make no difference. It is like the most awful tooth ache one could imagine. It is like I have a broken bone in my head.

Also, my glands in my left side of my neck are totally swollen again. They were huge for three weeks and then better for a week but now back to hugely swollen. Last night I felt like I might have a sinus infection. Maybe tomorrow I will start the antibiotics that Dr. Hopper prescribed.

There were moments today where I was in so much pain on R side head, plus dizzy, queasy, weak, frustrated, almost low blood sugary feeling.

Finally I begin taking tiny gelato spoon doses of codeine syrup. But it doesn't really do anything.

Second Dose of Amerge

7-12-11

I take the pill. It helps me. Maybe I can resume my life.
Thank you Dr. Taylor.

This is the reminder, the validation, that whatever is wrong with me stumps each doctor, but that each time I do continue and find someone new, they have a new idea.

7-13-11

I pledge to listen to myself better.

The Amerge is helping! I slept last night! Hooray for naratriptan!

Pregnant with Death

It is like I want to walk something out.

Like i am in labor.

like i am pregnant with death.

12:33 7-11-11 Wow.

An hour and fifteen minutes after the Amerge and it is helping. I want to cry with relief. I can lightly smile again.

1:30 effects seems to have plateau-ed
i tried to eat chicken soup but i am too ill

i am so nauseaus nauseus,
i am even nauseaus in my arms

i am in such a living hell.
the world's worst experiment. yes, i know there are others worse off then me, but still, this is pretty bad.

back to my dark room.

4:45 whew! Better.
couldnt eat my soup, had to go back to bed, but i slept! for an hour! then watched tv in the dark. got up and showered. and i feel better. i move slowly. but i am up!

I am going to make a Tres Leches cake for my mate's belated birthday. He is 54 now.