Tuesday, June 26, 2012

An Irish Blessing by John O'Donohue

I wanted to share a poem/blessing that an ME friend shared with me as I struggle to come to terms with being this ill again. It's a time of grief and that's what I'll give myself permission to feel without judgement.

For me this is a quite powerful blessing and captures the essence of what I struggle with. I cry every time I read it. I plan on using this in my meditations and reflections.

To all of you who suffer from ME:

A Blessing for a Friend on the Arrival of Illness
By John O'Donohue 
Now is the time of dark invitation
Beyond a frontier you did not expect;
Abruptly, your old life seems distant.
You barely noticed how each day opened
A path through fields never questioned,
Yet expected, deep down, to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.
You lived absorbed in the day-to-day,
So continuous with everything around you,
That you could forget you were separate;
Now this dark companion has come between you.
Distances have opened in your eyes.
You feel that against your will
A stranger has married your heart.
Nothing before has made you
Feel so isolated and lost.
When the reverberations of shock subside in you,
May grace come to restore you to balance,
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.
May you find in yourself
A courageous hospitality
Toward what is difficult,
Painful, and unknown.
May you learn to use this illness
As a lantern to illuminate
The new qualities that will emerge in you.
May the fragile harvesting of this slow light
Help to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel a rising within you a tranquility
Profound enough to call the storm to stillness.
May you find the wisdom to listen to your illness:
Ask it why it came. Why it chose your friendship,
Where it wants to take you. What it wants you to know.
What quality of space it wants to create in you.
What you need to learn to become more fully yourself
That your presence may shine in the world.
May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Toward the healing and freedom of dawn.

Thursday, June 21, 2012

The Five Year Mark: Assessing Quality of Life

Five years ago at the time of my diagnosis I still had the things that mattered most to me. My career was taking off, I had a partner, 3 kitties, a few friends and I was looking forward to being able to finally do all the things I had postponed because of a demanding PhD program (I was also working). Little did I know that was never going to happen.

I was able to drive although I was starting to become alarmed because I'd start to feel woozy when sitting in traffic. I had good medical, dental, and vision coverage. I was filled with hope and looking forward to the future. It wasn't without its stresses but I was doing something I loved. I was living out my calling.

Five years later what remains?

Nothing. All three kitties died (2 in the past year), my partner left me, I lost the house, and I'm in an apartment with poor insulation so its freezing in the morning and hot in the afternoon. The heater doesn't work nor does the oven. More importantly I found out the landlord is known for being a 'slum landlord'. He doesn't fix anything. The last tenant didn't have heat or a working oven either. I don't know how long he lived here but I know I won't go through another Winter with no heat.

This disease has taken everything that has mattered to me.

So how do I define my quality of life?

-a sense of meaning (Jung states in his book Memories, Dreams, and Reflections that "the least of things with a meaning is worth more in life than the greatest things without it").
-feeling connecting to a Higher Power/Divine/God
-being able to read Jung and write
-a relationship
-sense of family and community
-being in nature
-doing research
-having pets
-having the ability to explore the world
-a sense of being fully independent
-having good medical care
-being treated with respect and care
-being treated as if I matter
-feeling like I have something to offer

How much of what I wrote on the above list do I have?

Only 2 things. 1) I have a dog and a cat but Chelsea is in end stage cirrhosis and 2) I can do a little research on my laptop

I'm doubtful I'll be able to have the other things on my list unless I improve a lot more. I can't concentrate enough to be able to read my Jung books. I can't focus. I read the same line over and over trying to comprehend it but after awhile I just give up.

While I like living alone I'm finding it difficult to keep up with the daily tasks of living. I'm unable to. I'm simply too ill to be able to do the things I thought I'd be able to.

Last month the International Association for CFS/ME (IACFSME) released a primer for clinical practioners. I haven't read through the whole thing closely and there are a few things I disagree with but the authors stated that 25% of ME patients are at the severe level-either bedbound or mostly housebound like I am. And we are mostly left alone to fend for ourselves.

If we had a disease that was recognized by mainstream medicine those of us at the severe level of disease would at least be able to get in home support, etc....I just put an ad on craigslist to find someone to pay to drive me to appointments and to help with cleaning. I also need to have someone close by in case Chelsea needs emergency care. I can't lift her if need be.

When I have a pet who is very ill I'm constantly assessing their quality of life. Can they still do the things that matter most to them? Are they able to enjoy the things they love (i.e. chasing a ball, eating)?

When its clear they have a poor quality of life and there is no hope for improvement we make the painful decision to help our beloved pet transition to the next place. For my kitty Katie we had the vet come to the house. The vet and her assistant were wonderful. We all formed a circle around Katie. My face was close to her body and I was telling her how much I loved her, tears streaming down my face. The vet gave her the shot and she was gone. It was as peaceful as it could get. She was surrounded by people who loved her and she was in no pain when she died.

So why is it so different for people?

I think of the three women in the UK who suffered terribly from ME. One woman begged her mom to give her enough pain pills so she could die. Finally her mom, seeing how much her daughter suffered gave her the pain pills and watched her daughter die. What an intensely painful decision this mother had to make but she loved her daughter enough to make it. She was charged with a crime but later exonerated.

I think of Patrick others (who I won't name because it isn't public information) who's quality of life became too unbearable and they chose to leave this world. There was not one word of judgment from anyone in the ME community. We all understood. There but for the grace of God go I.

I'm one week into what looks like an extended crash. For the first time in months I had trouble standing in the kitchen yesterday and had to repeatedly go lie down so I wouldn't pass out. That occurred a couple times and it scared me.

I remember working at a crises clinic doing assessments. My supervisor told me about a friend of a friend who died in her apartment. She was living alone and wasn't found for a week. I remember thinking that's not how I want it to happen for me.

Those 25% of us at the severe level need support. We need to not be forgotten. We need to be remembered and we need to know that our life matters somehow.

Sunday, June 17, 2012

Common Variable Immune Deficiency (CVID)

As I've continued reading about CVID I wonder how many of us have this or how many of us are test for this. The symptoms are similar to ME/CFS except there are neurological manifestations in ME/CFS. Below is some of what I've found (references at the end):

The presenting features of most patients with CVID are recurrent infections involving the ears, sinuses, nose, bronchi and lungs. When the lung infections are severe and occur repeatedly, permanent damage to the bronchial tree may occur and a chronic condition of the bronchi (breathing tubes) develops, causing widening and scarring of these structures. This condition is known as bronchiectasis. 
Patients with CVID may also develop enlarged lymph nodes in the neck, the chest or abdomen. The specific cause is unknown, but enlarged lymph nodes may be driven by infection, immune dysregulation, or both. Similarly, enlargement of the spleen is relatively common, as is enlargement of collections of lymphocytes in the walls of the intestine called Peyer’s patches.
Although patients with CVID have a depressed antibody response and low levels of immunoglobulin in their blood (hypogammaglobulinemia), some of the antibodies that are produced by these patients may attack their own tissues (autoantibodies). These autoantibodies may attack and destroy blood cells (e.g. red cells, white cells or platelets). Although, most individuals with CVID present first with recurrent bacterial infections, in about 20% of cases the first manifestation of the immune defect is a finding of very low platelets in the blood, or perhaps severe anemia due to destruction of red cells. The autoantibodies may also cause arthritis or endocrine disorders, such as thyroid disease.
Some patients with CVID report gastrointestinal complaints such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss. Careful evaluation of the digestive organs may reveal malabsorption of fat and certain sugars. If a small sample (biopsy) of the bowel mucosa is obtained, characteristic changes may be seen. These changes are helpful in diagnosing the problem and treating it. In some patients with digestive problems, a small parasite called Giardia lamblia has been identified in the biopsies and in the stool samples. Eradication of these parasites by medication may eliminate the gastrointestinal symptoms.
Finally, patients with CVID may have an increased risk of cancer, especially cancer of the lymphoid system, skin and gastrointestinal tract.

Immunoglobulin replacement therapy combined with antibiotic therapy has greatly improved the outlook of patients with CVID. The aim of the treatment is to keep the patient free of infections and to prevent the development of chronic lung disease. The outlook for patients with CVID depends on how much damage has occurred to their lungs or other organs before diagnosis and treatment with immunoglobulin replacement therapy and how successfully infections can be prevented in the future by using immunoglobulin and antibiotic 
Five distinct clinical phenotypes have been delineated for common variable immunodeficiency (CVID): no complications, autoimmunity, polyclonal lymphocytic infiltration, enteropathy, and lymphoid malignancy.[11] In any patient with a past medical history of CVID, 3 complications must be considered: recurrent infections, autoimmune phenomena, and malignancy
The goals of pharmacotherapy for common variable immunodeficiency (CVID) are to reduce morbidity and prevent complications. Treatment with rapamycin has been suggested, but this therapy awaits proper evaluation.[31] Rituximab has been used to treat associated hemolytic anemia and thrombocytopenia.[32] Additionally, Lin et al reported on the treatment of CVID-associated cutaneous granuloma using etanercept.[33]


In patients with CVID, the risk of certain malignancies is high.
Lymphomas of a B-cell phenotype are of particular concern.
Malignancy is most likely associated with the Epstein-Barr virus.
The risk of gastric carcinoma is almost 50 times greater in patients with CVID than in other individuals.
Malignant melanomas are reported.

  1. A 20-year survival rate is 64% for male patients and 67% for female patients.
  2. In general, the expected survival rate for male and female patients is 92% and 94%, respectively.
  3. Death may result from various causes (see Complications

Thursday, June 14, 2012

Not feeling so well...

I'm not feeling very well. For the past few days I have felt like I was running a fever with chills, the dry gritty burning eyes, bad nightsweats. Yesterday I noticed I had a lot of small bruises on both arms as well as some petechiae on my upper left arm. There were also streaks of red that looked like Bartonella marks. Strange. I have no appetite so am forcing myself to eat.

Today I've felt badly crashed. I decided to take my temperature even though my temp usually runs around 97 or so and was surprised to see I'm running a fever. No wonder...

Concerned I may have caught something because my immune system is subpar, I decided to do a little research into my sub class immunodeficiency problem. I think the correct term is CVID (Common Variable Immune Deficiency). I realized I had never really looked at my labs. I was surprised to see that I'm on the low end of normal across the board in all 4 subclasses (2 out of 4 are low).

With a low NK function, immune deficiency, high EBV, family history of cancers including chronic lymphocytic leukemia, I can't help but feel like a walking time bomb in terms of cancer, particularly the lymphoma's.

I decided to run it by the Infectious Disease specialist whom I saw back in 2011 and who is using Rituxan on ME/CFS patients who meet the criteria. I sent an email explaining my test results, family history, and my concerns. He kindly wrote back a few hours later saying I qualify for being on Rituxan and to set up a meeting with him so they can get me started right away.

It's that darn driving thing again. I live over an hour from him and I can't drive on the freeway yet. I do want to try Rituxan. I think I need to. The side effect profile is what has prevented me from trying it in the first place even though I've had a prescription for Rituxan since 2009.

What's changed for me internally is that I'm aware that I

This is where it is tough living alone with this disease. There's so much that needs to be done but I can't get to it.

Chelsea continues to slowly go downhill. She started limping today-the same paw that she drags when walking (the vet says its related to her cirrhotic liver). I don't know if its liver related or whether she suddenly developed arthritis or if she injured it. I left a message for the vet.

Hopefully she'll let me sleep in tomorrow. I feel like I could sleep for days...

Friday, June 1, 2012

Just Breathe...

Trying to multi task major things is quite challenging for someone suffering from this disease, or anyone with any sort of cognitive difficulties.

I don't know where to start except to say I need a break from all this stress but I can't until I tend to several things. I know I'm playing with fire by pushing myself like this and I'm concerned but Chelsea needs my help.

Today is her 8th birthday. Her liver disease is progressing. I've been unable to get her diarrhea under control. She is taking Flagyl which is supposed to help the diarrhea but her prescription ran out on Weds. I've been unable to find a vet willing to refill it (I have refills left on the bottle) without having to also pay for an appointment. I've spent most of the day trying to find a vet as well as some answers. A new symptom emerged for her today. When she burps (severe liver disease causes digestive issues) there is a foul odor. At first I thought someone was cooking something awful then realized it was coming from Chelsea. I know dogs with cirrhosis can have issues with bleeding so I'm worried she has a bleed in her tummy.

I was able to speak with the vet at the rescue organization we got her from. She was quite concerned and wanted me to get Chelsea up to the rescue to she could examine and treat her. This vet is the one that saved Chelsea's life 2 years ago so I trust her. The problem is it's about 90 minutes away and I can't drive anywhere near that far.

I spoke to the vet that is currently treating Chelsea who said to take Chelsea to an animal hospital. She gave me some names of vets to ask for. She also told me to NOT go to a vet hospital near me.

I spoke to a third vet who used to treat my dear, dear Katie girl who died 10 months ago. He was also concerned and suggested feeding her boiled rice, boiled chicken breast, and cottage cheese. I've never boiled chicken before and the though of it sounds gross. I'm not a meat eater and I won't even deal with meat because it grosses me out. How do you boil chicken? I'll look it up.

The one vet said to keep her on the liver disease diet or else she will go downhill but the other vet said if she's not able to digest the liver disease diet it's doing no good for her anyway so I'll get the ingredients. He said the diarrhea needs to be dealt with because that can cause her to go downhill.

It's stressful and heartbreaking. I'm doing everything I can to fight for Chelsea but I'm limited physically. For example, I'm not feeling good because of running around today but I need to go back out and get the food for Chelsea. I know she doesn't have a ton of time left and I want to make sure she has the best quality of life that she can.

I've also been applying for various types of aid such as food stamps, medication assistance from Medicare, and Medi-cal. I didn't realize that when I moved I was just over the County line which means I'm living in another County. This ended up being a good thing because I filled out applications on the computer and 2 days later I have 2 huge packets to fill out as well as get tons of documentation.

It's like writing 2 more dissertations. I also had an appointment for an eligibility interview for this Monday at 8:00 about 15 miles away. I ended up having to cancel it because I can't drive. I'm hoping they can do the interview over the phone. I need the food stamps and considered taking a cab but it would cost over $100. I need the food stamps because the amount I budgeted for food isn't going to be enough.

I have to have all the information filled out and have that and the documents to them in 8 days. I need to apply for disability transportation also.

I'm forgetting things so I'm trying to write everything down but if the notebook is in the other room I forget what I was going to do once I get into the other room.  :  )  

As the stress continues (it's been 7 months  now) my brain functioning is decreasing. I can't afford that because I have to be able to remember what I'm told when I talk to a vet, or a case worker, etc....

Physically I'm doing remarkably well considering everything but each week I can feel my functioning slipping. I can't let myself get to a point of being bedbound again but I don't know that I have any other options but to push myself so I can get everything done and get Chelsea the help she needs.

I'm at the full dose of Zith for the CPN. I'm also at the full doses of Transfer factors' and am tolerating everything really well. I wish I could take the Azithromycin everyday because I feel better when I take it.

I got lab work results today and my immune system is getting worse. I don't know why. I haven't been too concerned about it until the past couple days. I've been having chills and night sweats along with a sore throat. Thankfully the sore throat is gone today.

My red blood cells are doing something funny. It looks like I'm on the edge of being anemic. That doesn't really surprise me considering all the bleeding I was having. Knock on wood that is better. But there are other things going on with my red blood cells that I don't understand. I need to find an immunologist probably sooner than later. I don't want to risk getting another infection and having that be the one that sends me back to being bedbound.

My sleep is good but my appetite isn't.

I like where I live. Everyone is so nice. There is a pharmacy near me. Yesterday I went to pick up some medications only to find out that they accidentally gave one of my medications to someone else and it was charged to my Medicare plan. They were great about resolving the situation. It turns out that someone else has my name including the same middle name! Even though where I live now is urban it has a small town feel in that everyone is so friendly.

I sat down (or rather laid down) to write a completely different blog post but my mind went blank so I ended up with this one. I'm rambling now so I'll stop here. I'm deeply exhausted. I don't think I can go out again. I have to for Chelsea.