Monday, September 30, 2013

The Last Straw?


I'm tired of this. Fighting with doctor's over medical bills, the sense of aloneness, and difficulty making friends due to this illness. Trying to convince doctor's that I'm not exaggerating or malingering, having to explain why I can't join social events. Being poor. I'm sick of it. I'm sick of doing everything alone. Having to drive myself back home from a painful medical procedure while in severe pain, going to appointments by myself hoping I'll be able to remember what was said. The struggle for sleep, the struggle to gain muscle, the inability to dive into my research like I used to.

I can't even go out to explore because I can't friggin drive far. Not that I could right now anyway due to the back pain but when I look at all the activities I could get discounts on through groupon I want to cry. I don't mind doing things by myself at all but I sure would like somebody to do things with. I can't drive but I can, or I used to be, fun and easy to be around.

Everyday I ask the Universe to have mercy on me and just let up already.

I've been giving it until my birthday to see if anything shifts or eases. My birthday is Sunday. I'm now carefully weighing my options.

There's a line in a popular song by Rihanna called "Stay". It catches my attention each time I hear it. It goes:  "this isn't much of a life you're living". So true. Not much of a life. Not much hope left, if any.

Yesterday I woke up and was in such severe pain I could not get out of bed. My back, which has a herniated disc at the same level (L5-S1) as before (when I had surgery), was hurting so bad I wanted to go to the ER. I could not walk downstairs for the next 4 hours the pain was so bad. I've been taking massive doses of Advil, Vicoden, and Soma in spite of the risk of a stomach bleed due to NSAIDS and gastritis. I'm icing as much as I can. I only use pain meds as a last resort.

I'm taking all these meds just so I can walk around my bedroom! It's not to go out and do something but just to be able to bend over and feed my cat or clean his litter box.

This isn't a life at all.

Because I have Medicare I can't get in to see the neurosurgeon until November 27th. WTF am I supposed to do until then?

The pain I'm in feels like the last straw. I've never felt this sort of pain before. It's just a tad better today. A tad. Not enough to go downstairs yet. I may need to take a Vicoden on top of the large dose of Advil I took an hour ago.

I know that to ease pain I need at least a lumbar epidural. If that doesn't work the next step is either going to a stronger pain medication or fusion. I can't afford the epidural or surgery.  Pain meds not only slow my already slow gut motility but they exacerbate the gastritis. I can't afford more slowed gut motility especially right now as my body recovers from the medical procedure I had last week.

I'm too tired to deal with this level of pain. I'm dealing with way too much stuff alone. I'm at the tipping point. I'm fed up with all of this.

Saturday, September 28, 2013

A Nice Tribute to Tom Hennessy


In case anyone hasn't seen this here's a link to a tribute to Tom Hennessy, "a fierce ME/CFS advocate and long time sufferer" of ME, who took his life on September 9, 2013.

There is a phone in memorial tomorrow 9/29/2013:



http://bocanewsnow.com/2013/09/19/chronic-fatigue-activist-dies-in-boca-raton/, 
A one-hour phone memorial to Tom will take place tomorrow (Sept 29th, 4 p.m. EDT, 3 p.m. CDT, 2 p.m. MDT, 1 p.m. PDT). The memorial is being hosted by P.A.N.D.O.R.A. Members of PANDORA supported Tom after his car accident a couple of years ago. “We are inviting everyone to join us in a memorial honoring the father of International May 12 Awareness Day for NEIDs, Thomas Hennessy, Jr., a fearless and dedicated advocate for decades. The call in number is 559-726-1300, access meeting code 915440.


Those outside the U.S. may dial in through their computer through the Internet using the Flashphone here: https://www.freeconferencecallhd.com/hd-conferencing/“  Join the event and find out more about it here.    PANDORA Org will hold a global phone-in memorial service on September 29 at 4:00 p.m. EDT. Chapo-Kroger said details are available on the organization’s Facebook page:https://www.facebook.com/events/414025958719718/ Tom Hennessy, Jr.’s Phone-in Memorial September 29 at 3:00pm in CDT P.A.N.D.O.R.A., Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. in Wyoming, Michigan 

Friday, September 27, 2013

Eenie, Meenie, Miny, Mo

I should not be blogging but aggressively resting. I'm quite sick. Today is the first day I've been able to email people. It might be pushing it to do a blog post. Unfortunately I'm all too familiar with what can be in store for me if I don't turn this around.

Throughout the course of this illness I start getting sick in the Fall and then am down the entire Winter. It occurred throughout worst years of my illness so I know this pattern. 

The only time it didn't happen was when living in Livermore and then Pleasanton where I did my best.

 I'm trying to figure out what caused this so I can try to avoid feeling this way in the future. I'm too sick to juice. Eating has gone out the window for now. In the future I need to have on hand some instant soup or top ramen or something.

There are several contributing factors:

1) I had a medical procedure on Monday. It was painful. Extremely painful actually. There was one point where I couldn't stop myself from suddenly yelling "SHIT" because of the pain. I quickly apologized as did the colon surgeon but I sort of chuckled inside because of the pun (shouting shit in a colon surgeon's office). He also apologized and said it was his error.  By the time I got home (had to drive myself) I was in so much pain that I had to take a Vicoden. For the next 6 hours I laid in bed unable to even watch tv. The best I could do was listen to a recording of Jon Kabat-Zinn doing a meditation on how to deal with pain. 

However, when I had the procedure before I did not feel this way after.  So this couldn't be the sole reason.

2) Toxins-there are 3 closets in this bedroom. One is big. I stored stuff from the old toxic apartment there. Tuesday I was trying to make room for more stuff so I threw more stuff out and organized the rest. I've decided to put the rest of my stuff in the closet in the hopes of making Winter less Doom-like.  I was already not feeling well but want to get the stuff in there asap. That project is currently not finished due to feeling pretty horrid the next day.

3) Resetting the nervous system might be stirring up toxins (whether bacterial/viral/mold related). The last time I tried Prazosin I felt really sick for a couple days which is odd for an alpha blocker to cause an increase in symptoms.  I think resetting the nervous system is causing an increase in symptoms because its also affecting the immune system.

Prazosin, although an anti-hypertensive drug, works on the sympathetic nervous system. It's particularly effective for reducing the diastolic pressure. Mine is usually high sometimes creating narrow arterial pressure. 

What does this have to do with the immune system?

Chronic illness often results in a body dominated by the sympathetic nervous system. This results in all sorts of secondary problems.

An additional feature of the fight/flight response (sympathetic nervous system) is an increase in immune system activity (Sapolsky, 1998; Scaer, 2001). Rises in norepinephrine and epinephrine in this acute phase are associated with increases in the organism's front line of defense, expressed through augmentation of natural killer cell activity (Scaer, 2001). As acute stress becomes chronic, however, elevations in cortisol levels impair the immune response and inhibit natural killer cell activity, rendering the organism more susceptible to infection (Scaer, 2001).

4) Stress-lots of stress. Big-time stress.

5) I'm just plain sick. I don't think this is the reason because the way I feel right now is how I've felt at the worst of my crashes. I feel like I did when I was a kid who had c. pneumonia. It feels as bad now as it did then.

6) allergies. 

Considering the severity of this crash or sickness or whatever the hell it is I think its all the above.  

I have to figure out how to get myself out of it. I can't remain this sick here. I have to negotiate stairs which are currently difficult due to feeling so bad.

A friend sent me her remaining Immunovir so I took 1/2 of the 500mg tablet. It has helped a little. I don't feel as bad as I did when I first woke up. 

I know that when I have any improvement quickly after starting a medication, especially in the Fall when I start going downhill, means it's a keeper.

The only problem is that it costs over $100 a month. If I can get well enough to work part time I can afford it.  Otherwise I can't afford it.

Saturday, September 21, 2013

A Taste of Winter

It's a cool, gray rainy day. If I had a sense of home it might be cozy. Unfortunately the sense of home is lacking for reasons I'll get to later.

I'm getting a glimpse of what Winter will be like here. It's grim. I do not want to be here for Winter. I'm quite worried about it. I do not want to be stuck in this toxic room with gray skies and low cloud layers with a housemate who decides to stop speaking to me rather than communicate when I do something he doesn't agree with. It's painful when it happens because I'm wanting more connections with people. I'm actively looking for other places to live but keep running into the same damn problem. People don't want to live with someone who is home most of the time. I'm going to post an ad on craigslist so I can spell everything out and not have to go through the process of explaining everything.

I have stuff from the apartment that had the bad mold so as I lay here I'm being re-exposed to toxins. I can't go outside (which has been my escape) because of the rain. I don't have rain shoes.  The muscle weakness is back at times today though not as anywhere near as bad as when I lived in that apartment.

I'm experiencing depression. Out of nowhere. I've been trying to get a support system and other things in place before Winter gets here. Not only that but I'm worried about going through the Holidays alone again.

I have a difficult living situation. One of my housemates stopped talking to me for 3 days because I asked if I could have at least a little space in the freezer (I had none before and only a small space in the refrigerator). Then he stopped talking to me for 2 days because I removed an air freshener plug-in that was causing headaches and nausea every time I went downstairs.

I misjudged a friendship. What I thought was a friendship was not.  It feels bad to have misjudged this (plus it feels bad to not have the friendship that I thought was there).  It's been a blow to my self-esteem as I gradually and cautiously step back out into the world after being isolated for so long.

And there's the money issue. Hemingway (The Sun Also Rises) wrote in response to a question about bankruptcy:

“How did you go bankrupt?"
Two ways. Gradually, then suddenly."

I'm broke. I need to see a dentist because of tooth pain but because I have no dental insurance (could no longer afford it) I can't see a dentist. I've been gargling with warm salt water. Last time this happened I used both gargling and Argentyn 23 Colloidal Silver which worked. The only problem is that I don't have any. I should have been thinking ahead.

I need brakes for my toxic car.  I had 50-60% left over 1 year ago. I'm trying to make the ones I have last as long as I can but I'm having to push on the brake pedal harder than I used to.  There are lots of stoplights and stop signs around.

The reality is I need a different car. I'd like to have a cargo van so I convert it.

Last week I was invited to lunch and dinner but had to decline because of money. I was too embarrassed to tell them the real reason.

I could use a comforter.  It gets friggin cold in this room. Because of temperature regulation problems caused by a malfunctioning autonomic nervous system, when I get cold it takes a long time to get warm. My hands and feet get cold easily. My fingers get numb as a result. The tips of my fingers are numb right now. I need fingerless gloves or gloves I can wear and also type.

Mostly what I need is a way to make money so I can afford treatments. I'm supposed to start Immunovir but can't afford it.  I panic inside when I think of no longer being able to afford the treatments I'm currently on.

 I'm using my food budget to make partial payments on medical bills. I do not have money for food next week. Luckily I have some food I'd been saving in case this happened. I received some unexpected money (thank you C.R if you still read this). Forty dollars went for groceries last week. The rest will be put towards medical bills and rent. I'm so behind on medical bills and they keep coming in! Another arrived in the mail today.

I have to have a medical procedure redone on Monday. I'm as worried about the cost as I am about driving myself home in pain again. It really hurt last time. I'm hoping there won't be any heavy bleeding.

The money thing is frightening. If I knew I could work it would be different.  In order to work I need additional treatment in the hopes of boosting my functioning. It's a catch 22 because in order to improve my functioning I need more money. In order to get more money I need to work part-time. But I can't work because I'm still too sick.

I'm in therapy now and going to support meetings but I can't drive at night which limits things. I'm going through something unrelated to ME/CFS which is also complicating things. I wish I could talk about it but right now it's staying between 3 people: myself, my therapist, and my ex.  It involves a major, major life decision.

The last time I felt a sense of home was almost 2 years ago when we were living in the house we'd bought.

I don't know what's ahead. I've been fighting hard for a better quality of life.  I'd like it to be easier.

This too shall pass...


The world breaks everyone and afterward many are strong in the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry. Ernest HemingwayA Farewell to Arms, 1929




"What is home? My favorite definition is "a safe place," a place where one is free from attack, a place where one experiences secure relationships and affirmation. It's a place where people share and understand each other. Its relationships are nurturing. The people in it do not need to be perfect; instead, they need to be honest, loving, supportive, recognizing a common humanity that makes all of us vulnerable.”
― Gladys HuntHoney for a Child's Heart: The Imaginative Use of Books in Family Life







Wednesday, September 11, 2013

Treatment Update

I'm torn as I write this post. There have been a number of deaths in the lyme and CFS community in the past year.  Some have been decided to take their own lives while others died of "unknown" causes.   I want to honor them especially someone who was one of the people that started May 12 ME/CFS awareness day and was a big advocate in the CFS community. It's heartbreaking and it makes me angry that so many people continue to sit on the sidelines doing nothing but accusing us of malingering or think that what we need is a referral to a psychiatrist when the reality is that we need medical treatment. And we need research.

I get how the downward spiral can happen. It starts when one can no longer afford treatments. My doctor and I talked about how one needs to be rich to have and treat this illness.

I know I have a limited time left before I can no longer afford treatments. Without the treatment I'm on I'm bedbound. My doctor knows this too and is working with me on what to do.

We both agreed I need to get well enough to be able to work part time which would allow me to afford everything. As it is now I'm having to pick and choose the lowest cost treatments.

My doctor and I met for almost 2 hours yesterday. I was able to go see him in person thankfully.

I put an ad on craigslist to pay someone to drive me to and from my doctor's office. It's a 2 hour drive each way. I ended up "hiring" the only person who responded even though I had a couple red flags. He talked the entire way there so by the time I met with my doctor my brain was already fried.

I recorded the appointment using my iphone. As I listened to it I was struck by how weak and wiped out I sounded as well as how much I was struggling cognitively. I was having trouble speaking especially in complete sentences. If I closed my eyes and blocked out the fact that it was my voice I would think the person talking was very ill.

Once again, though exhausted, I was struck by how much improvement I've had since I was last there. I was able to tolerate a 2 hour drive there, a 2 hour medical appointment, a 2 hour drive back, and a little shopping trip (the guy who drove me wanted to stop by the Petaluma outlets).

I had a lymphocyte subset panel done by a local neurologist who was convinced I had HIV. It was abnormal but had nothing to do with HIV.  The CD4 count was high and CD8 low.

CD8 cells are closely related to NK cells. Both are low for me (NK very low). We discussed the need for me to increase both especially with the family history of cancer along with the fact that I've already had one pre-malignant polyp almost 2 years ago (I have to have a colonoscopy every 3 years now).

CD4 cells are high. They are like T helper cells.

The fact that these are abnormal suggests that something is tweaking my immune system. What didn't make sense to my doctor was the fact that my IgG subclasses (1 and 3) are low. Based on the results of the Lymphocyte subclass testing the IgG subclasses should be high rather than low.

Immunology is based on people who have cancer so there aren't good markers out there for people who have chronic illnesses.

I've been having a sensation on my legs and sometimes my arms of an ant or bug crawling on my skin. When I go to get the bug off there's nothing there. I've also been having a sunburn like sensation on my forearms but both issues occur so randomly that I'd been unable to figure out what's causing it.

My doctor said its due to neuropathy and the nerves being irritated. It could also be due to toxins but the fact that there is no pattern suggests something else.

I've been wondering why I'm so thin because I thought inflammation caused the body to gain weight. Being thin is also due to inflammation. I don't remember why. He mentioned Leptin when I suddenly realized I'd forgotten to turn my iphone voice recorder on so I missed the next few minutes of what he said.

He said that HHV6 is becoming a problem for me again and wanted to treat that. Since I'm having a flare up of gastritis (nausea and abdominal pain) he didn't think going back on Valcyte would be a good idea. He said that Mobic which is like NSAIDS can help boost Famvir but we had to discard that also because it can add to stomach issues.

He recommended an immune modulator. I'd already tried and failed LDN (it exacerbated neurological issues) so he recommended Immunovir. Because it will come from a canadian pharmacy it will be a few weeks before I can get it so in the meantime I'll start Inosine 500mg.

I need to get my heart rate down and get my blood pressure under better control. Basically we need to reset the autonomic nervous system. My sympathetic nervous system is on overdrive which is causing insomnia and early morning awakening.

To do that I'll start Iverbradine. Iverbradine is a medication used to treat chronic heart failure especially left ventricle types. It reduces the heart rate.

Once I've adjusted to the Iverbradine I'll add in Prazosin at night. Prazosin is an alpha blocker used to treat hypertension and congestive heart failure. It's used off label to treat sleep problems occurring with PTSD and Raynaud's disease.

I'll discontinue the Pindolol once its clear that Iverbradine will work.

Hopefully between the Prazosin and Iverbradine I'll be able to slow down the sympathetic nervous system.

Unfortunately Iverbradine isn't sold in the US so I have to pay out of pocket.  I need it though.

Sleep-Trazodone keeps me asleep for about 6 hours max. I also feel groggy and depressed the next day so I stopped taking it. I'll restart low dose Doxepin in the hopes it will work again.

He stated that some people's cortisol increases at night causing sleep issues so I'll add in Phosphatidylserine 1-3 at bedtime.

He agrees that Bartonella is an issue again so I'll restart A-Bart.

I told someone that I'd ask why many people with this illness feel worse in the Fall and Winter. He said because it rains more causing mold to do its thing.

Driving-he thought I was extra sensitive to the exhaust fumes and/or there is mold in my car. When I told him it had been flooded in El Cerrito and smelled like mold whenever I turned the a/c on he recommended getting it treated for mold. He also recommended trying a respirator/chemical mask when driving to see if I could drive farther.

He recommended charcoal for binding to toxins 5-10 capsules 30 minutes before a meal. The reason for taking it 30 minutes before a meal (especially one with some fat) is because bile is released and toxins are stored in bile (and elsewhere).

I'm exhausted and this is long so I'll do Part 2 tomorrow or Friday.
























Monday, September 9, 2013

Oops!


I was fiddling with the settings in my blog and forgot to change them back.

I see my ME/CFS doc tomorrow. I'm paying someone to drive me and am a tad nervous about the guy but oh well! I tried changing it but its less than 48 hours so I would be charged a cancellation fee.

Insomnia! It's been bad. I've been up since 3 a.m.  I'm not feeling all that great today because of it.

Lots of heart related issues the past 10 days starting with my house mates wedding reception where I noticed every time I laughed I could feel the strain on my heart. Like laughing was too much effort.

Saturday night I had an unsettling episode. I thought I was having a heart attack, lol.  I was suddenly overcome with anxiety, nausea, tingling in my arms, a strange unnerving back pain, and felt faint.

Because my blood sugar has been so whacky I wondered about low blood sugar so I forced myself to have some Gatorade and saltines.

I'll post a treatment update after seeing my doctor. The good thing is I get to see him in person.