Monday, November 25, 2013

Invitations, Hummingbirds, and Pain

When one has been housebound and isolated for a few years and having spent the past 2 Thanksgivings alone (I think), I was surprised when someone invited me over for Thanksgiving this year. I don't know if my mouth literally or figuratively dropped open but I remember having to remind myself to close it (or keep it closed). It felt like a brand new experience to be invited somewhere for a Holiday.

I haven't been good at checking various emails lately so last week I checked the one I used to use professionally (and have started to again). I was shocked to see an invitation to submit a proposal for a poster paper/presentation at the graduate school where I got my Ph.D. They are hosting a conference in mid-May called Imagination and Medicine: Soul in Body and Nature. I'm sure many people have been asked. I have to submit a sample by mid-January.  If I'm one of the people selected I would get to attend the conference for free. I would absolutely love that!

Two significant (for me) invitations in one week!

Which brings me to Hummingbirds-these strong, fragile, and fascinating birds whose symbol is the connection between this realm and that of the Divine.  Anyone who has read this blog for awhile knows I have a special connection with hummingbirds.

Yesterday a hummingbird was sitting on my feeder just outside my window. She was puffed up (birds puff themselves up when cold) but looked as if she were breathing rapidly. I got out my camera and took a some pictures. Neither the camera nor my presence bothered her in any way. She was still sitting there after I took a shower so I became concerned as its rare for a hummingbird to sit at a feeder for so long. I got on the computer and googled "hummingbirds sitting at feeder for a long time". What came up was that it could be a sign the hummingbird was sick.

She continued sitting there while I looked up local Wildlife rescue organizations. The only one in the area was too far for me to drive (12 miles away). When I contacted them I discovered they have no way of sending anyone to rescue the hummingbird. So I sat and found myself crying (lots of emotions these days so it doesn't take much). I wondered why I would have to watch such a sacred creature (especially to me) seemingly die right next to my bedroom window. I got up to see if there were any visible signs of injury or fungal infection or the bird virus (whose name escapes me at the moment). There were none. All the info on google stated the hummingbird would likely die within the next 12 hours if no assistance was given.

I paced and waited and kept trying to find someone who could come help her or at least drive us to the Wildlife sanctuary which was open until 6.  After about 90 minutes, with my face pressed to the window, she started drinking from the feeder. She drank some more. I went into the other room for a minute and when I came out she was gone. I went downstairs in case she'd fallen off the feeder but thankfully found no trace.  Just the chickens busily pigging out on bird food.

Today I went to a meeting then talked to someone for about 2 hours afterwards. When I got back it occurred to me that I hadn't seen her or heard her (the hummingbird) all day when suddenly she appeared at the feeder again. It was as if she arrived out of nowhere (usually I can hear the whirring sound they make) I recognized her because she was still puffed up. She sat on the feeder for about 10 minutes. Another hummingbird came by and drank. After about 10 minutes I watched her fly away.

Why spend time writing about this?  I don't even know. I think its a sign of something but I can't figure it out yet. The night before last I kept having dreams of finding very ill (near death) babies and woke up feeling unsettled.  Maybe the inner and outer event are connected somehow which can happen with synchronicity but synchronistic events are usually linked by and with death (whether it be physical or psychological). Sometimes it can take awhile before the meaning reveals itself so I'll wait and see.

And then there is the issue of physical pain that I've been experiencing. It started Friday night after going to a meeting and talking to some people. I turned down two dinner invitations because I had a feeling I was in for some back pain after defrosting my mini fridge all day Friday (I'd let the ice build up too much so was on my knees bending over cleaning up water a lot).

When I got home I had brief episodes of the worst back pain I'd ever experienced. So bad that in spite of myself (my housemate was home) I found myself crying out in pain and being unable to move. In between pain episodes I googled the type of pain I was experiencing and I think I was having severe muscle spasms which is one way an injured part of the back (my herniated disc) attempts to protect a back injury. I spent the rest of the evening on a heating pad and took Advil which didn't help, took a Vicoden which didn't help, and then took Soma (muscle relaxant) which did help some.

Yesterday I noticed I'm having pain in all my connective tissue where it even hurts to straighten my arms. I'm also having tingling along my upper back along the bra line.  Strange.  Today the pain was worse but with the added addition of muscle pain. I have no idea what's going on. Is it a herx? Or because of the NA EDTA?  Or just simply a new M.E. symptom?  Or was it the Mastic Gum/DGL I started taking Friday for the stomach pain? I'm out of Mimosa Pudica-could it be that? Who knows? It's always a guessing game with this disease.

I'm also feeing fluish so decided to forgo a meeting tonight in favor of a heating pad and bed rest.

My M.E. doctor is out of town but I will be seeing the neurologist for my back on Weds. I plan on bringing these issues up with him. Hopefully he can help. I also plan on bringing up the results of the pulmonary function test and see if he can help me get in to see an ENT.

A strange post I know but life can be strange with this disease all that has occurred these past years....

Thursday, November 21, 2013

Treatment Update

I continue to feel grateful for many, many things. Every now and then I feel graced by feelings of deep joy born out of tolerating deep suffering. I feel a deepening of my sense of spirituality. It has been a long journey and fear still lives with me but I'm working on making that less of a motivator. 

I'm starting to put on weight thankfully so the na EDTA and the Mimosa Pudica are working. I'm also having an increase in functioning which means I get to continue to work on emotional healing as well as developing friendships. 

I'm redefining who I am out of the ashes of my old life. I'm grateful for my therapist. Though an intern she's a natural and is tough in that she's been able to handle the feelings that have been emerging in me.

I never thought I would be able to write a post like this the first 4 years I was ill. I thought I would be forever non-functional 22 hours a day. Many, many times suicide seemed like the best option I could offer myself and those around me.

I have enough energy to grieve strange as that may sound. But to those that have been severely and even moderately affected this makes sense. It takes energy to feel emotion whether it be joy, happiness, grief, anger. It takes energy to change and even to have hope.For awhile I simply had to be numb and resign myself to merely existing and surviving each day.

I don't know if this is my new normal nor do I know how long this will last but I'm hoping that with all the treatments I'm doing (if I can afford them) that I'll continue to be able to retain my current level of functioning. I'd love to have more improvements but if I don't I'm grateful for the gains I've made both emotionally and physically. 

I miss my ex but that's okay. I'll probably always love her because of what we went through together. I'm sure for her it was traumatic (as it was for me but she had the added burden of taking care of me and shouldering the financial responsibility during the time I had no income) I hope she is living her dreams and I continue to feel grateful that she had the courage to leave the relationship. I was emotionally burdened with the guilt of knowing this illness was robbing her of her dreams. And I could see what it was doing to her soul.

I'm at the limit of my Medicare Part D coverage but have a plan on how to proceed. I have enough medications to get me through the first part of December.  I have enough of the important things to get me through to the end of the year. I'm extremely grateful for the two people who donated enough Imunovir to get me through the first of the year and then some.

My three favorite treatments right now are Mimosa Pudica (it has antiviral, anti-fungal, anti-parisitic, and anti-bacterial properties), na EDTA which is helping my gut, and Imunovir. I'm not at the full dose of any of them but they have each contributed to an improvement in functioning. 

Because I'm a lot more active I'm having back issues. At times the pain has been severe enough that I've had to resort to large doses of Advil (against the medical advice of the GI doctor who diagnosed "raging gastritis-he said no more NSAIDS but if I absolutely had to make sure to take Zegerid) which has caused a resurgence of pretty severe stomach pain. The pain usually starts at around 3-4 a.m., is localized to right where my stomach is, is severe and at times leads to nausea. I spend the rest of the night trying to take the focus off the pain. 

It has happened quite a few times in the past 2 weeks. I can't sleep and I can't even concentrate on TV as a distraction. I've tried every OTC remedy I can. Some I cant' because I'm unable to swallow pills and most are time release (Zegerid, Prilosec, etc...). My last resort is to try Mastic Gum/DGL. I'd emailed my doctor's office and that's what they suggested. I need another endoscopy but that will have to wait until I pay off my medical bills. Luckily I see the neurologist for my back on the 27th. Hopefully he'll have some ideas.

Some good news-I received an invitation for a presentation of the results for one of the research studies I was in three years ago. I don't know how much I can say at this point and will reserve any comments until after the results are presented to us. The invite stated "no guests" so I'm assuming that means to keep things confidential. But I wanted to throw that out there for anyone who is waiting and hoping for news.  

They are also continuing to finish one of the other studies I was in which is also good news. This particular study is the one I've been eagerly waiting for.

I will post as soon as I receive permission.   These were large, well designed studies performed by a well respected institution. 

Wednesday, November 6, 2013


I'm  not a photographer in any way whatsoever so excuse the beginner photo's but I wanted to do a post on things I'm grateful for.  Though life is not easy by any means I realize I don't post enough about things that bring me joy as well as things I'm grateful for. There are many and they arrive in many forms whether it be an experience, meeting new people, birds, chickens....

A couple weeks ago I dreamt I was in danger and had to leave an apartment I was living in. I was terrified (which has been an undercurrent for me since getting sick and especially since the ending of my relationship).

In my dream I realized I needed to leave the apartment. I was alone but saw that a baby was also in danger and in need of saving so I picked the baby up and left, terrified.

Once I left I realized my mom was walking beside me as I was carrying the baby. I take a lot of comfort in that image.

Although things are scary on just about every level I'm also being taken care of somehow. Last night I woke up at 3:00 a.m with severe stomach pain. I was so tired. I didn't know what to do as it was a different sort of pain than I'd had before so I laid there and prayed. I drifted off to sleep and dreamt I was at the hospital about to have a CT scan. I was relieved that finally they would figure out what was going on but woke up again in pain. This morning as I bent down to feed my cat I vomited. It was clear liquid. I'm not that worried about it. Nor am I going to try to figure it out (at least today)-life is too short.

Instead I'll focus on what a gorgeous day it was and for the people I connected to.

I had a good day in spite of little sleep. I'm making friends very, very slowly. I'm grateful for that.

I'm grateful for:




This truck in the yard for some reason

The fountain that I hear outside my window-its sound is soothing

The hummingbird feeder hanging outside my bedroom allowing me to hear the constant whirr of hummingbirds as they arrive to feed.

My holy (wholly?) Kale that the chickens also enjoy

Colors of Autumn

Autumn Colors

Chicken humor


Bird parties


My little buddy who feeds at the feeder

The opportunity for rebirth


Discovering new music I like....

Tuesday, November 5, 2013

Treatment Plan

I had to make a list of what medications/supplements I've been taking because I'm having a little trouble remembering what to take. Once I made the list I realized why!

I have to mention how grateful I am for my M.E. doctor. Without this treatment I would be bedbound.


Nature-throid 32mg (Thyroid)                  
Cytozyme AD   (Adrenals)                        
Ashwaghanda    (Adrenals)                      
Famvir  500mg   (Antiviral HHV-6)                      
Perque Activated B12
DHEA Cream
Ivabradine (Coralen) 5mg  (POTS/Heart Rate) (not sold in US)
Lamictal 25mg (Mood)          
(reduced Lamictal due to money)
Colostrum 1/2 tsp (Immune System)                      
Imunovir 500mg   (Immune Modulator)            (not sold in US)
(should be on higher dose but reduced due to $)

Mimosa Pudica (samples from MD)  Parasites


Valtrex 500mg       (Antiviral-EBV)
Minocycline 100mg  (C. Pneumonia)        
Azithromycin 250mg (C. Pneumonia)
(every Mon & Thu)
Lamictal 25mg                  
Flexeril 10mg   (Muscle Spasms)
(titrating off due to $)
Imunovir 250mg                
(reduced amount due to $)                

(will eventually add in another dose of Mimosa Pudica for Parasites)

HS (Before Bedtime):

Valtrex 500mg                  
Colustrum 1/2 tsp      
DHEA Cream
Cytozyme AD      
Gabapentin 200mg             Sleep/Neuro
(will be reducing due to $)
Clonazepam 1mg                Sleep/Neuro
Prazosin 1mg                      Blood Pressure/Reduces Sympathetic Nervous System Overdrive (has helped with the early morning panic awakening)
Ivabradine 5mg                   Heart/POTS
Liquid Doxepin 4-5 drops  Sleep
Tiny dose of Domperidone Gastroparesis     (not sold in US)

Recently added Na EDTA 3ML for malabsorption (will increase to two times daily after two weeks)



Miralax  1 capful
Prune Juice


Biotene for dry mouth
brush after each meal due to dry mouth
ACT anti-cavity
Electric Toothbrush for more efficient plaque removal
Sensodyne toothpaste for sensitive teeth


Therapy (@ $1 per session)
12 Step Program (free and can be supportive/ease isolation)
Gratitude List


Juicing:  Kale, Beets, Swiss Chard, Spinach, and others.
High Protein Veggies:  Caulifower, Broccoli, and others
High Protein Shakes with frozen blueberries/almond milk as well as supplements (NAC, Acetyl l Carnitine/Alpha Lipoic Acid, Magnesium Malate, Quercitin, L-Lysine, Milk Thistle)
Boost Glucose Control for extra calories
Other foods not worth mentioning but I'm focusing on eating/drinking as many superfoods as I can each day.

Saturday, November 2, 2013

Vocal Chord Dysfunction

I haven't seen an ENT yet but I was doing some research and was SO relieved to find out that many of my symptoms (cough, shortness of breath, hoarse voice) can be explained by Vocal Chord Dysfunction. The rest (weight loss, swollen lymph nodes, sore throat) can be explained by M.E.

I was most interested to discover that there is research indicating that Vocal Chord Dysfunction can be caused by toxin exposure, specifically water buildings:

Two building occupants experienced cough, chest tightness, shortness of breath, wheezing, and hoarseness when in the buildings. Clinical evaluation included laryngoscopy, which demonstrated abnormal closure (adduction) of the vocal cords during breathing in both cases. They were diagnosed with VCD. Co-workers developed upper and lower respiratory symptoms; their diagnoses included sinusitis and asthma, consistent with recognized effects of exposure to indoor dampness. Building evaluations documented water damage and mold growth. The building occupants with VCD continued to have symptoms in the buildings despite remediation efforts. They ultimately left employment due to VCD.
VCD can occur with exposure to water-damaged buildings and should be considered in exposed patients with asthma-like symptoms. The primary therapy for VCD occurring in relation to a water-damaged building should be exposure cessation. These cases highlight the diagnostic and therapeutic challenges that exposure-related VCD can pose.

Part of what spurred my research is while at therapy this past Thursday (we were in a different room than normal)  I felt a tiny bit woozy. Noticing the fluorescent lights I asked if it would be possible to turn the lights down. It didn't help.

I was having episodes of hoarseness. Toward the end of the appointment I started getting that strange tickle that I've come to associate with impending throat closure. It didn't happen luckily.

I'll still follow up with an ENT to rule out cancer just to be on the safe side and also to find out if there is any treatment.

I'm so relieved. I don't want to be rendered voiceless by cancer just as I'm starting to find my voice (symbolically). :)

We  were all traumatized by the suddenness of my mom's cancer diagnosis and subsequent death. She appeared healthy just a few months prior to dying so it still echo's in my psyche and it tends to be the first place my mind goes. Two weeks before she was diagnosed she appeared healthy aside from the weight loss and fatigued. 

I had a dream last night that there were a couple boats in a place I was visiting. A guy named Erik Johnson was taking people on tours in one boat. I don't know why I couldn't get in his boat but the waves were getting rocky and it was becoming more difficult to navigate the waters.

I had a great couple days where my functioning level was close to pre-illness levels. It was awesome. Today I felt pretty awful with that hangover like flu feeling along with shearing muscle pain. I'm hoping it will ease up tomorrow. I was supposed to be at a conference again today but couldn't due to malaise.

The weather has been absolutely gorgeous...