Friday, August 23, 2013

Re-Engaging with Life

If I were to label this period of my illness it would be re-engaging with life.  I'd been too ill previously to even hope to be able to write a statement like that.

But that's what I'm doing. I'm re-engaging with life . There is a lot I've been thinking about as well as a few projects I've decided to tackle. One involves building a website. I'm looking forward to teaching myself how to do it. My ex sent me some excellent links (she knows about all this stuff).

I'm doing research a  couple hours a day. I find myself feeling joy at being able to think better again (still a long way to go). As I"m reading the research I find myself engaging in asking questions. I love ideas and possibilities and theory. I enjoy following the thread of a question where ever it leads.

I'm also finding myself in this strange position of being well enough to consider having a few friends in my life. There's so much I want to do  and explore. I want to travel (as best I can). I want to go to the oldest place in the world and stand there and feel the power of the land and the spirits of the ancestors. 

I'm being very selective in the friend department and am taking an active stance vs passive. I know the type of people I don't want to be friends with (flakes, dishonest people, being treated like a pest, mixed messages (come here/go away).  I'm finding myself drawn to different sorts of people than I was prior to getting sick. I like it. 

I'm playing music a lot. I love music. I adore the Violin. Always have. I think it sounds beautiful. I love the beauty of the violin itself. 

I've written a draft of a letter to my dissertation advisor to explain what happened and to get started on publishing. This is something I've avoided doing because of the grief involved. I shed a few tears as I was writing but I noticed something sort of incredible.

I was talking about my illness in the PAST tense. I'm  not in remission. I'm still very limited but I've had huge improvement considering how sick I was. 

But I talked about the severity of symptoms in the past tense. As if I could move on with the rest of my life now. What a gift. 

Yesterday I went to get my hair cut. It only cost $15.  The stylist asked what I did so I told her (what I used to do). Her reply was "oh so now you're going to analyze everything I say".  I sighed to myself. After hearing statements like this for years it's become a pet peeve.  It closes down conversation because I start to become self conscious every time I ask a question!  Or make a comment about feelings. I want to shout at people. This is WHO I AM!  I was drawn to the profession precisely because of the qualities I had. 

What I am in an empath. It's who I am. 

In Preparing for Winter I found Spring...

I suppose another title for this post could have been "Why am I doing so well?"

A friend from grad school and I reconnected via Facebook a couple weeks ago.  She lives in Northern, CA near the Oregon border. We'd lost touch for various reasons (writing a dissertation and doing demanding post-doctoral residency at a large HMO in addition to managing a private practice will do that).

She emailed me Tuesday because she was going to be in the area the following day and wanted to know if I wanted to get together. That makes two visitors in one week's time. Something that would have been impossible 2.5 years ago and one visitor alone would have resulted in at least a 2 week crash.

Last week my friend and I sat and talked for 4 hours. It was great! One of my favorite things is having conversations. I love the process. I thoroughly enjoy getting to know people because I have an innate curiosity about almost everything. It's nice to get back in touch with that feeling again.

I got up the next day with only mild lingering effects. I went out and ran errands, did a lot of gardening, and was still able to do my research.

I thought about how impossible that would have been in 2010. Not only was it impossible but I gave up hope of ever having any sort of life. I had sort of resigned myself to simply surviving each day rather than living it.

The first 4 years of my illness were at the severe level. At times speaking above a whisper felt like too much.

I tried all the treatments out there except for stem cells, Rituxan, gcMAF, and Ampligen. All of them. I spent countless thousands of dollars. My entire life savings went towards treatments with little to show at the time.

After 7 months on Valcyte I tried Valtrex with no results. then Famvir with no results. I tried LDN but it only exacerbated the neurological stuff. I did Cheney's stem cell protocol in preparations for stem cell treatment, did Cell Signaling Factors (a la Cheney), Live Cell therapy injections, treated lyme, babesia, B12 injections, methyl B12 injections, the methylation protocol, and so on.

In 2008 my CFS doctor wrote this letter for me when I was in the reconsideration stage of the SSDI process.

In 2009-2010 (til September) I was pretty much bedbound. I was unable to talk on the phone for any length of time without crashing. If I had a medical appointment I would have to take a shower two days prior to the appointment to allow myself enough time just to recover from the shower. I needed help with showers even.

My bed was maybe 10-15 feet from the bathroom. I'd be able to get up from bed walk a few steps before needing to take a break. Many, many times I'd have to lie down right on the floor so as not to faint. Or I'd make it to the bathroom but would feel so faint while going to the bathroom that at times I had to stop and lay down immediately.

I could no longer go into stores without feeling as if I would faint.

I was having frequent staph infections on my big toes. I had a total of 5 staph infections resulting in minor surgery to remove part of the toenail. I had to have this surgery done twice on each big toe (getting shots between ones toes hurts).

When we went to look at houses to purchase I'd have to lay down in the back of the car to travel the 35 minutes.  Looking at houses and remaining upright were challenging at best.

We bought a house and moved in September 2010. I decided to give Valtrex a try again because I was feeling so bad physically and was desperate for any improvement in functioning. I had little hope.

We moved on September 15. The day before I started Valtrex.

I noticed an improvement in mood upon moving. I also noticed a significant increase in back pain which I now understand as my body's expression of the inflammation process. I had back surgery in 2006 to remove a large herniation that was compressing nerves (so there's a history of back problems).

I saw an orthopedic surgeon who prescribed physical therapy to see if that would help. Physical therapy? I thought to myself. I was pretty certain I wouldn't be able to attend PT twice a week.

Not only was I able to attend physical therapy twice a week but I noticed a significant reduction in PEM (one of my most disabling symptoms at the time).

There were other improvements as well. At the time I thought Valtrex was the reason I improved.

In November 2011 my relationship (domestic partnership) ended so I went and stayed with my sister and her family for the next 6 1/2 months.

I had even more improvement. Suddenly I found myself doing their laundry as a way of saying thanks. This is a busy, active family so each week I'd wash and fold ten loads of laundry (plus my own). Not only was I able to do laundry but I was walking my dog Chelsea (who sadly died a couple months ago), plus interacting socially on a regular basis.

Given the amount of stress I was under I should have been doing a lot worse.  But I was on antivirals and antibiotics. I continued to believe they were the reason for my improvement.

At least I thought so until I moved.

I moved to El Cerrito in May of 2012. I found out I was living in a building that was water damaged. The previous tenant had complained (and subsequently moved) because of mold. Another tenant in the small complex had recently died of kidney failure (he was on dialysis).

Within a few months time I noticed my functioning starting to decline.  By December I had a significant increase in symptoms as well as muscle weakness in both legs. I noticed the muscle weakness was much worse in my apartment.

I started feeling woozy again. I noticed my ability to be in stores reduced. Doing errands became difficult. I was no longer able to walk Chelsea like I should.  I became worried I was on the road to becoming bedbound again.

The only thing that changed was that I had moved. My treatment remained the same.


Saturday, August 17, 2013

Some Important Things My Doctor Told Me (when I was diagnosed)

I was lucky in that I was diagnosed within the first four months of having symptoms. I started having symptoms in July, 2007 and was diagnosed on November 2, 2007.

I was so sick and had no idea what was going on. I was pretty frightened because symptoms had already started interfering with my life in a big way.The only abnormal test result at that time was high ANA which prompted my doctor to refer me to a highly respected rheumatologist in Berkeley to be assessed for Lupus.

I had prepared a 5 page list of symptoms as well as my family history of cancer.

As the nurse brought me back to the room, I glanced into an office where I saw the doctor reading through my symptom list. I was pleased he was taking the time to read it before coming in to see me.

My Internist had put me on a high dose of Prednisone to see if it had any effect. It did have a positive effect because my adrenals were in such bad shape. Not two years prior an acupuncturist had me do testing to see how my adrenal glands were performing. The results showed as late a stage of adrenal fatigue as one could get without being full blown Addison's Disease. The acupuncturist said at the time "I'm surprised your able to function".

The Rheumatologist entered the room and said "I think you have Chronic Fatigue Syndrome".  I was SO relieved and happy! I said "Thank goodness. I am so relieved to hear this! I thought I had something serious!"  He looked at me somberly and said "this is a serious and debilitating illness with a bad name that is demeaning. It's like HIV but it isn't. It's like Hep C but isn't"

When his enthusiasm didn't match mine I became confused.  He continued "there isn't anything we can do for it and there isn't any cure".  Something got through because I then asked him "What will my quality of life be like?"  He was silent for a moment before saying quietly "I don't know". That got my attention.

These were some things he said in during that appointment that have remained with me and I use as guides:

1) It isn't your fault, its your genes.

     This was huge. For many, many nights after I would think "what if I never did this or what if I'd never done that". I even asked him if something I did caused it. He said no. I have since come to realize there is a genetic predisposition to this illness. Certain environmental factors/stressors caused the gene to turn on.

2) Do/Eat what feels good and avoid what doesn't feel good. He said to pay attention to how my body feels. He even mentioned locations. He said some patients feel better in certain locations.

     This was even huger (is that a word?).  This has guided my journey through this illness. As I started treating various infections I had to learn to differentiate what was a herx vs what was simply "bad"for me. As an aside CFS doctor's are starting that for those people at the severe level pushing through a bad herx is a bad idea. It puts too much stress on an already struggling body.

3) Learn to pace yourself. Don't push through fatigue or other symptoms.

     I told my doctor that I used to be really active but that now even walking for 20-30 minutes brings on symptoms. I told him I get woozy after 10 minutes but push through it. He looked alarm and said do not do that. If activity brings on any symptoms stop.

4) Get involved in Clinical Trials. Experiment. Learn all you can about this illness.

    He told me about the Valcyte trial at Stanford.

5) Sleep is critical.

Then he said I have nothing else to offer you. I'm sorry. And handed me a prescription for Prozac (which I couldn't tolerate).

I have since learned a whole bunch more but will stop here for now.

Wednesday, August 14, 2013

August 14

This date will forever remain etched in my (and my sisters) mind. It was the day my mom died some years ago. I want to honor her. She was a special person living her life quietly yet affecting so many people.

She died from an extremely aggressive cancer that took her life 44 days after she was diagnosed and approximately 4 months after experiencing her first "benign" symptom. That odd stomach ache she had one night that prompted her to call me and the rest of her family (her brothers and sisters).

I remember listening to her phone message the day I got home from work. It was a simple message. For some reason that phone call is etched in my mind. She said "Hi XXXXX-This is mom. Call me when you can. I woke up in the middle of the night with stomach pain."

It was an unusual message to get from her. She didn't complain about things. When I heard it a deep wave of anxiety passed through me. In a panic I dialed her number. She said she just wanted to say hello. I asked her about the pain and she dismissed it saying it woke her up in the middle of the night. She was planning on seeing the doctor.

Puzzled by my reaction I hung up the phone unaware that in a few short months we would gather around her as she took her last breath.

Her brother and sisters all had a similar experience of receiving a different sort of phone call from her. She told them about her stomach pain also. It was as if she knew on a deep level what was ahead and was alerting us.

I could tell a lot of wonderful stories about her. I could talk about her courage. She used to stutter but overcame it. She had an arm that wouldn't straighten all the way. At times kids made fun of her. I saw her cry on more than one occasion about it. She was deeply sensitive, intuitive, and deeply committed to her faith. She loved us. My Dad would later say she was "fiercely loyal" to us. I don't think I ever heard her gossip about anyone.

She wasn't without her flaws. But she was a special person. As word spread about her cancer (and the gravity of it) people began sending cards. She had so many visitors and cards. They were precious to her.

I remember the day I found the cards sitting on the table unopened. I looked up and saw my mom's small figure (she lost so much weight) sitting under the tree in the backyard.

She had started the process of leaving of dying. I knew it. I knew she was going to die the day I left work early to wait for my parents to come back from the doctor (the day she was diagnosed).

I'll never forget that day either. I stood in the kitchen and watched with the most horrible feeling as my Dad approached me followed by my mom who was in so much pain by that point she was hunched over.  It was as if they were in the shadows with this big monster of Cancer right on their heels. I couldn't see them clearly.

I stood in her kitchen as they approached me. It was as if it was in slow motion. My Dad's face was pale and tense. He was silent but my mom.....she had a kleenex rolled up in her hand in a way that was so her. She'd been crying. She said to me "it's bad. It's really bad. The doctor said its cancer".

I literally slumped to my knees on the floor. I couldn't cry. I couldn't believe it.

My thoughts went to my sisters. One of my sisters was picking the other one up from the airport. They had no knowledge of what was occurring at home.  I thought about how their lives would change the moment they heard the news. I remember they knocked on the door. I went to open it and saw them standing there having had a fun trip, smiles on their faces. My heart broke for them. It broke for my Dad. It broke for my mom.

They came in. I finally managed to say "it's not good" or something. My mom was laying on the couch.  She told them. They all cried. I was still in shock and couldn't cry. My mom pulled me over and said "it's okay to cry".

My Dad left to go get a morphine patch the oncologist had ordered. And then we went on a 44 day cancer journey that was at once terrifying, tragically beautiful (the moments with her and some spiritual things that occurred), deeply sad, and.....very,very difficult.  They were in the middle of planning my sisters wedding. My mom decided to get chemo even though she was "terminal" in the hopes of being able to walk down the aisle with my youngest sister at her wedding scheduled for October just 4 months away. Her oncologist later told me that my parents were some of the bravest people he ever met.

Everything happened so fast. She started confiding in me that she feared she wouldn't make it to the Wedding in October.  I assured her we would move the wedding up if need be. Inside I was terrified at hearing her talk that way. It meant Death would arrive way sooner than any of us wanted leaving no time or space for a proper goodbye and to say all that needed to be said. She was only 59.

She loved weddings. She had so much fun helping my other sister plan her wedding.

She kept telling me that all she wanted was to be able to walk my sister down the aisle.

One night in late July she had a difficult night. She was agitated and upset and angry that this was happening to her. She was angry at having to leave us. My Dad had been diagnosed with Prostate Cancer not four years earlier. His prognosis past 5 years was uncertain. She made him promise not to leave us too.

That night was difficult. She finally went to sleep early in the early morning hours and had a dream. She dreamt "God" was welcoming her and had told her everything (we) would eventually be alright.

She woke the next morning with a sense of urgency. She wanted/needed to speak to a Priest that day. A young Priest arrived later that morning. They spent a long time together as we anxiously waited outside on the porch.

He finally came out. The only thing he said was "your mom is a beautiful person. she doesn't have much time left. We have to move the wedding up. It needs to be next week."

And he was right.

We had that wedding 4 days later. It is still the most beautiful and most moving wedding I've ever experienced. We had a huge backyard (1/4 acre). It was transformed into a beautiful space. All of our friends brought over flowers from their own backyards, potted plants, flowers, homemade food, a beautiful arch, a photographer made himself available. Everything came together in four days. The wedding looked as if it had been planned for months. There was a felt sense of community. We all needed each other. My mom's sisters and brother and cousins flew in from Oregon.

Soon we all gathered for my sisters wedding. We helped my mom get dressed. She was so thin. Her abdomen was swollen from ascites. Her lower legs were painfully swollen (I used to massage them every night to give her some relief). She was jaundiced. We had to get a special color makeup so she wouldn't look so jaundiced. It helped only a little.

But she made it. It was hard to keep myself from sobbing as I watched her small, frail (even though she was my height) figure shuffle down the aisle hanging on to my sister and my sister's brave face as she walked down that aisle. Her heart must have been breaking.

It was a tragically beautiful day.  But my mom got to see her youngest daughter get married and she got to walk her down that aisle.

After the wedding she started slipping away. More time spent sleeping, a little confusion at times because the toxins were affecting her brain.

She died 16 days later. It was a difficult day. A difficult death. But we were right by her side.

There were over 600 people at her funeral. The Church was filled-standing room only. People sent so many cards describing their experience with my mom and how much she helped them, how much she touched their lives with simple acts. It wasn't the huge things. It was things like listening to someone who had recently gone through a divorce or bringing a meal to a sick friend....but there were hundreds of people who felt seen and heard by her. She had a way of making people feel like they were the most important person at the moment.

Four years earlier I had come out to her.

I wrote the following post the day the Supreme Court ruled on same sex marriage but never posted it. I'm posting it today in honor of her. In honor of a special gift she gave me....(many gifts actually).


I woke up the morning of the ruling feeling my mom's presence. Because that doesn't happen very often I took notice wondering what it meant. She usually "appears" when something is up.

Later in the morning I turned on the news and watched as the tv journalist reported the historic decision. It made sense then why I felt my mom's presence that day.

As many of you know my mom died some years ago. We only had 44 days with her from the date of her diagnosis to her death. The cancer was that aggressive.

One night my mom, my sisters', and I sat in the living room going through the heartbreaking process of dividing up her jewelry and her antique clocks.

Four years prior I had come out to my family. My mom struggled with it for a little while. While painful for me I understood her feelings and appreciated her honesty.

My mom's struggle had nothing to do with judgment or discrimination. She was grieving. She wanted me to wear her wedding dress. I was her firstborn. And she knew that my life would be difficult. She grieved the discrimination I would face.

I grew up in a time when there was always a nod to discriminating against LGBT people. I grew up hearing jokes about gays (not by my family) (think Anita Bryant).

I've been called names, chased, hit, spite at, had drinks tossed in my face, my car's front hood punched and pounded on. I experienced a lot bullying and homophobia much of which I've never talked about.

My mom became my biggest advocate. She participated in P-Flag, walked in the San Francisco LGBT Pride Parade, and during the days she was dying, had a dream. She told me she dreamt that gay people were the most spiritual people she knew.

So that night as we sat together and talked about who would get what my heart was heavy with grief. I was devastated. We all were.

When we were finished my mom looked at me and said "you're Dad and I talked and we want you to have my wedding ring". She continued "When you get married I'll be there". And I knew she meant it.

Even though I doubt I'll ever have a relationship again that night, that moment when she gave me her wedding ring, meant the world to me. She was honoring something that I'd had great shame about and which I'd gone great lengths to hide. She knew how important having a partnership meant to me.

And she was giving me her Blessing on getting married.

I wish I had come out to them sooner because once I came out the walls came down. I was able to hav a closeness with my mom that I hadn't had previously. I waited until I was 29 to come out.

I only had 4 years with her after that. I wish there had been more.


My mom loved to shop. One of my favorite things to do with her (aside from playing card games and board games) was to go shopping together. We'd shop and then have lunch and shop some more.

Historically I've gone shopping on the day of her death and when near enough I'd visit her grave. Since being sick visiting her grave is no longer an option. I live too far away.

I don't have money to shop. I wish I did. It would be comforting. I'd love to buy a pair of flannel pajama's or that pair of microflannel sheets on sale at Penney's. Just some comfort as a balm to the sadness and the aloneness.

Instead I'll honor her by writing this blog post and changing the hummingbird feeder and then I'll go sit in the backyard and watch the chickens and let my tears be a testament to how much I love her.

Tuesday, August 13, 2013

Odds and Ends

There's always that point in a move where there is a bunch of random stuff that gets put in a box for lack of a better place to put it. 

As I head into this transition I find myself in that same space except rather than "things" its information. I'm trying to find a way to cope with a difficult reality (one I'll talk about in a future post). 

First, I discovered why I was flattened so badly the past few days. I was exposed to a toxin in addition to pushing myself. It it was purely viral then why did taking a shower help me feel a little better?  

My housemate invited me to a play on Sunday. I was so happy. When one has been isolated for over 6 years it's a big deal to be invited anywhere or included or treated like you matter.  

As I was standing in the vegetable aisle picking out some Kale I looked up as two woman greeted each other, hugged, and started talking about their lives. My eyes filled up with tears as I felt the longing that emerged. It's been years since I've had that happen. Sometimes its overwhelming how much I miss having friends like that.  

After being isolated so long its like I've forgotten what having friends feels like or how to go about making friends or how to accurately judge social cues. I seem to be misreading them. 

There is a new book out that was written by someone who suffers from this illness (who has mostly recovered by doing "extreme mold avoidance"). I'm always in support of sharing information when  someone finds a way out from this prison. 

Lisa has chronicled the life of someone who has all but recovered using a strategy he learned in the army. 

I wanted to include a link in case anyone else is interested:

In case the link doesn't work you can go to amazon and look up Lisa Petrison, Ph.D. "Back from the Edge...". 

I know there is a lot of controversy about mold avoidance but the reality is that people have dramatic improvements when they follow the guidelines.  

I know that the people who have embarked on this journey have had to go "in the closet" so to speak because of the judgment that has come their way. They become as marginalized by the CFS community as CFS patients do by healthy people. 

If I had the money to sustain a living like that I would try it. I have noticed a big bump in improvement if I'm in the right type of living situation. And I go downhill if I'm in an environment filled with various toxins. I'm still learning what affects me.

I'm feeling better than I have the past couple days but am still feeling rotten. I'm going to air out the house and do a bit of mopping and stuff.

Saturday, August 10, 2013


I'm flat on my back with some sort of virus that started yesterday. I feel like I did when I had c. pneumonia as a child. I had labs done in a lab where a pediatric office so I'm sure I got exposed to some  virus. 

I've been having pain on the soles of my feet for a few weeks which is my sign that Bartonella is at play again. I started "Beyond Balance" yesterday. Starting it confirmed my suspicions because within two hours the pain on the soles of my feet increased quite a bit. Same story today.  

I feel as if I got hit by a truck. I'm forcing food. I'm too nauseous to eat but can't afford to not eat.  

Thursday evening I got a message from my Dad that his kidney function has dropped to 22%. He's been dealing with Chronic Lymphocytic Leukemia and Prostate Cancer in addition to the kidney stuff. He's in good spirits. I'd like to find a way to get out there so I can see him. Unfortunately funds are extremely limited (as in anything extra comes out of my food budget).

For some reason that and one other thing that happened sort of jarred me into "waking up".  

For awhile now I've felt like I've been chasing friendships, trying to expand my social network and find a few close friends who are curious about life, like to dive in deep waters (not literally), and who can hang with someone like me.  But the friends (with a couple exceptions) I've been seeking out haven't reciprocated which is okay.  I don't blame them considering how I've presented myself.

It's clear to me now though that I've been looking in the wrong places. If I don't feel met in a certain way its time for me to move on.

More importantly its time for me to reclaim the parts of me that I abandoned when I got sick. It's also important for me to stop thinking of myself as deeply flawed because I have a chronic illness.  I do think all the events of the past few years have brought me to my knees and stripped me bare in a way.

It's time for me to rebuild myself and to work through the traumas that have occurred. So much has happened that needs processing.  

At heart I'm a Jungian. It's where I draw my sense of spirituality, strength, and joy from. I love studying/reading about anything Jungian. I see the world through a poetic lens that is tinged with a hint of melancholy. I'm no longer going to apologize for that sense of poetic melancholy. It's born out of all the loss. The poetry of David Whyte, Rainer Maria Rilke, Rumi, and Jung (he was a poet too) all have that same poetic sense.

Jung said many profound things -- this to me is one of the most important, and can be at the basis of art and healing..

"To the extent that I managed to translate the emotions into images– that is to say, to find the images which were concealed in the emotions– I was inwardly calmed and reassured." 

In context: 

"I was living in a constant state of tension; often I felt as if gigantic blocks of stone were tumbling down on me. . my enduring these storms was a question of brute strength… To the extent that I managed to translate the emotions into images– that is to say, to find the images which were concealed in the emotions– I was inwardly calmed and reassured. Had I left those images hidden in the emotions, I might have been torn to pieces by them. There is a chance that I might have succeeded in splitting them off; but in that case I would inexorably have fallen into a neurosis and so been ultimately destroyed by them. As a result of my experiment I learned how helpful it can be, from the therapeutic point of view, to find the particular images which lie behind the emotions.” p. 177-179
(Image is from the Red Book)

There was a time in Jung's life where he went through a crises (as did Freud). He used imagery, mandala's, active imagination, and dream work to move through his crises and transform the his experience from one of crises to feeling centered. It refocused his work and he went on to write some of his most profound work after that.

I find images healing. Especially now that I'm sick and often have word finding problems or forget altogether what I was saying.

I love this quote from Rilke:
“You must give birth to your images. They are the future waiting to be born. Fear not the strangeness you feel. The future must enter you long before it happens. Just wait for the birth, for the the hour of the new clarity.”
I've decided to live from that mythopoetic place again and go back to studying something that brings me joy, expands my way of thinking, and provides a way of healing.

I used to live from that place before getting sick. It's one of the things I abandoned because I've spent the past 6 plus years focusing mostly on researching this illness and trying to improve my functioning and quality of life.

I'll be withdrawing from online groups having to do with this illness (and where I feel at best a pest). I've starting arranging my Facebook page to reflect my commitment to living from what is most important to me. I'm going to narrow down the friend list.

I'm seeking people out who are in that world. I used to know a lot of people. My peers are all publishing. It's time for me to take up that call.  After I passed my dissertation defense my advisor gave me a hug and whispered in my ear "You have a responsibility to write and publish".  He's not one who is generous with praise. He's a tad arrogant but brilliant and is a world renowned scholar in this specialty.  So his whispering has echoed in my head ever since.

What I didn't know at the time was that I was already sick. Five months later I became housebound and spent the next six years chasing improvements.

I do not want to spend the rest of my life solely focused on improving my functioning. I no longer have the money for it. Plus it has felt empty to me for awhile.  

I have three blogs. One I started just prior to the break up and is still too painful to go back to so I'm going to delete it. 

My Jung blog is going to be listed first so that's the blog that will be seen. 

I'll still blog here occasionally but my focus on chasing improvements is now second to my focus on inner healing-on healing my Pyche and Soul as well as turning towards what feeds me rather than depletes.

Tuesday, August 6, 2013

And the Bills...

....came crashing in. Sheesh.  I forgot that it takes a few months for Medicare to process billing. Imagine my surprise when over $10,000 worth of medical bills arrived.  I had an ER visit, 2 consults with surgeons, an abdominal/pelvic CT scan with contrast, a regular doctor visit, more bills from the epidural I had last year and over $500 in dental bills (crown and mouth guard) plus labs that Medicare didn't pay for.

Medi-Cal helped with some but I have an almost $900 PER MONTH deductible.  Unfortunately the services all occurred in different months. In the future I'm going to schedule all medical procedures for the same month.

I'm grateful for both Medicare and Medi-Cal but I do wish they paid for more stuff.

I still have over $200 worth of medical bills on my desk and that's not including the surgery or the neurologist visit.

I have enough savings left for one more move and that's it. My mold avoidance plan is out the window now.

I had to have minor surgery last Monday and also had a consult with a neurologist.  Unfortunately I'm having some complications from the surgery but hopefully it will be easily resolved.

My weight has dropped to 117.5 pounds (I simply don't have an appetite and I get full very easily). It was even less when the surgeon's nurse weighed me. It turns out I'm almost 5'9. Luckily the neurologist noticed the weight loss (I've lost over 1/3 of my body weight in the past 3 years) and expressed his concern. I saw the neurologist for the sciatica/back pain but he ended up doing a full neurological and physical exam. He found swollen lymph nodes in my neck and cervical region.

He ordered labs to probe a bit deeper into my immune system. The neurologist has people close to him who have "cfs" so he knows how devastating it can be (his words).

I'm not worried. I think this is all "cfs" related.  I do worry about my weight only because it means I don't have any reserves in case I need it.  Also, my clothes are big on me so I need to wear belts with jeans/shorts. I have one pair of pj's that are too big for me. I don't have the money to replace anything.

I remain on the same treatment regime at the moment. It keeps me from being bedbound. Right now I'm struggling with that horrid fatigue. I'm also having a lot of heart palpitations and muscle spasms in both calves.

I used to be doing a whole lot worse before this treatment.  I was bedbound. Now I'm mostly housebound and my bad days are what my good days used to be like (if that makes sense).

Current Treatment:

Westhroid (thyroid support)
Cytozyme AD (adrenal support)
Ashwaghanda (adrenal support)

Perque Activated B12
Milk Thistle
Alpha Lipoic Acid

Valtrex 500mg BID (EBV)
Famvir 500mg AM  (EBV/HHV6)

Minocycline 100mg (c. pneumonia)
Azithromycin (250mg pulsed Mon & Thu)

Flexeril 10mg TID (muscle spasms)

Colustrum 1/2 tsp BID (Immune Support)

Gabapentin 200mg HS (sciatica)

Amantadine 5ML BID (fatigue/dopamine)

Lamictal 50mg BID (depression)

Clonopin  1mg HS (sleep/neuro)

Pindolol 2.5mg BID (POTS)

Avoiding toxins as best I can

It's a lot of meds but I need to be one them. I have tried lowering the doses several times and I start going downhill.

I don't eat dairy (except for greek yogurt). I juice daily.  I need to refigure my diet again because the latest glucose test confirmed pre-diabetes (blood sugar was 117-top of the range is 90). It was my third reading over 100.

I'm not sure how much longer I'll be blogging about "cfs". I'd like to focus my energies on writing about things I love like Jung.