Wednesday, November 26, 2008

Setting Boundaries

One of the challenging things about having a chronic illness is that of recognizing one's limits and setting boundaries. It's so easy during special occasions like Holiday's to push oneself just one more day. At least it's easy for me to do.

I learned this lesson over and over last year. It's only now that I'm putting it into action. I realize that first I need to be aware of what my red flags are for crashing. Once I've identified what they are and recognize that yes this is happening, I need to take it seriously. Taking it seriously means putting it into action and saying "no, I can't do that" or "I need to go lay down now." No one else will do this for me. No one else is inside my body.

Last Holiday season I was closing my practice. I didn't yet realize what having CFIDS meant so I pushed myself. I thought once I get to January I can rest. Except that my January I had become so ill I was housebound.

With the upcoming move my body is already in a highly stressed state. Part of having CFIDS means that my body doesn't handle stress well anymore. It's humbling to admit having worked in high stress environments but it's the truth. My nervous system does not function well.

I'll be glad when this move is over. In a little over 2 weeks we'll be in our new place that hopefully will be mold free. I'm anxious to get in and settled and working on the next phase of my healing. I'm tired of focusing on mold.

The cholestyramine is helping though. Today I drove myself to the doctor to get a spot on my skin looked at. I had googled driving directions (yahoo actually) but they were wrong. Way wrong. I got flustered but kept reasonably calm. I only got a tiny bit lost and easily found my way again. It's good to know I'm having slight cognitive improvement. I had to wait for almost 90 minutes for the doctor. I was feeling a bit shaky by the time he came in but luckily he was quick. I had originally hoped he would do a very thorough skin examination but was actually fine that he didn't given I had waited so long. Anyway the spot was precancerous so he froze it. As he pointed what looked like a huge spray can at my arm he says "this is going to hurt and started spraying." It hurt but not that much. Then he did it a second time for what seemed like much longer. It didn't start hurting until the drive home.

It's so funny how different doctor's introduce when something is going to hurt. My CFIDS doctor prior to inserting a HUGE long, thick needle into the scar where I had the bone tumor removed said calmly "this might feel a little annoying." What an understatement that was. Then there was my podiatrist who had to cut away more of the toenail when I had the staph infection "this might pinch a little." Whew! Again an understatement.

Lab techs generally introduce pain with counting: "ready, one, two, three and stick."

But the spray can didn't hurt much at all.

I was invited to join Wellsphere which is an online community. I've started checking things out over there and I really like the website. I'll post more about as time goes on.

It's time to go rest now.

Tuesday, November 25, 2008

A Sense of Community

I've been moved by the offers of help from people. Daphne's best friend is flying out to help with packing and a garage sale. Her mom is going to buy a dehumidifier for the new apartment. My dad and LuAnn have generously given us a gift certificate to Ikea. My sister's have offered to help move and pack. Friend's have offered there help in packing. Vanessa was here all day late into the evening on Saturday helping to sort through stuff and lend a reality check to the questions "can I keep this one?" There's others that I can't remember right now (cognitive impairments). Renee's support through her comments on this blog. It's all very moving and makes this a bit easier to bear. Every gesture is meaningful.

Mold takes no prisoners. I'm struggling with the reality of needing to either get rid of everything or put things in storage. It's similar to when people try to figure out whether or not they have food allergies. All suspect foods get stopped only to be resumed one at a time and then watch for a response.

This is similar. The idea is to first get out of the environment by moving. Then get rid of most things. The things we want to keep we'll put in storage. After a few weeks we introduce one thing at a time to see how I react. If I react, the item finds a new home. I don't like it one bit but I feel it is necessary. The thing I've really struggled with is getting rid of the bed but the more reading I do the more I'm convinced at least intellectually that the bed needs to be put in storage. It could very well be soaked with mycotoxins.

I realize throughout all this I have developed supernose and super hearing. Well, not really but my sense of smell and sound are extremely sensitive. A neighbor came over to borrow some ice (I'll miss that about living here). She walked in and it was as if I was cooking turkey right here in the kitchen. These are both responses to mold exposure. They are also consistant with lyme too. Which brings me to an interesting point. Both mold and lyme seem to produce similar toxins in people with the sort of genotype I have.

The cholestyramine is helping. Interestingly enough I feel my worst in the morning. I've noticed that it's only after I take my second dose of CSM that I begin to come around and than am able to be more funtional.

Although we are losing just about everything I feel grateful for so many things.

Tomorrow I see a dermatologist to get a skin cancer removed. Apparently this doctor does a very thorough job at examining every part of the body to detect cancers. That's a good thing. Both my parents had multiple skin cancers. At one point it seemed that one of them was coming home with a bandaid on after another one was removed. Unfortunately has left me with too relaxed an attitude towards skin cancer. My doctor last week put a little fear in me though when he said well, it could be a "precancerous thing, or a basal cell carcinoma, or a melanoma. Regardless, it is asymmetrical, bigger than a pencil eraser, multiple colors-I want this thing off you asap." Okay. It had been on my list of things to do for a couple months.

Sunday, November 23, 2008

In a Bad Crash

Bedbound for the day. And it's not the time for it. My muscles ache, I feel weak, and beyond fatigued. So I'm doing what I know I must in the hopes of bouncing back to the meager level of functionality I had. I'm staying in bed or laying on the couch. Not that I really have a choice but it's nice fooling myself into thinking I could do something if I really wanted to. I can't. Just making my protein shake exhausted me.

I'm guessing it's a combination of inhaling mycotoxins that have been stirred up from sorting and packing yesterday. Not that I did much but I did a lot for me.

We are slowly getting rid of our possessions. I'm having trouble getting rid of my books and papers. I'm hoping there is a way they can be cleaned or salvaged somehow. It's taken me years to get this collection of books. I'm afraid of getting rid of books almost like it's symbolically saying I'm giving up. I still have small hopes of maybe teaching or at least writing though on days like today it's hard to hang onto those.

Smells are nauseating, sounds are too much, I have a slight buzzing in my ears (is that the mold, the lyme, or something else). I have a new symptom that has started where I feel like I have something in my throat right where I'm guessing my Thyroid is. It's very disconcerting and raises my anxiety. I was too afraid to mention this to my doctor though I will mention it at my next appointment.

There are so many decisions to make, so much to do and I'm so deeply fatigued.

Wednesday, November 19, 2008

Is It Physical or Mental?

I had the most bizarre conversation with the new landlord today. I checked my messages to find one from her wondering about my illness. On the application I filled out in place of employer I put "recovering from an illness" and also added that my income was from state disability. At least for one more month it is.

I reluctantly called her back. I just didn't want to have to get into an explanation of "my illness." It's really none of her business and I can easily provide proof of income should she require it.

Here's how the conversation went:

Landlord: Hi, this is ...... I just wanted to find out if it was You who had the illness or your employer.

Me: Oh, it's me. (In my head I'm thinking I think it's pretty clear who has the illness. I didn't offer any other information. It was making me a little nervous she was even asking about my being ill.)

Landlord: Oh so it Is you. Have you been ill for long?

Me: (feeling increasingly uncomfortable). Well, maybe for about a year. I quickly add "but I'm hoping to have improvements by Spring." Suddenly I find myself scared she's going to take away our apartment just because I'm sick.

Landlord: Oh. You've been ill for a year?

Me: Yes. I'm under a doctor's care and I see him monthly-he's closely monitoring my health. I suddenly find myself needing to prove something to her but not knowing what. It's clear I'm not providing the information she wants. It's not that I'm trying to be difficult. It's just that people don't understand this illness and I just didn't have the energy today to try to educate someone. I'm also aware of how intrusive she is. I want to reassure her but I'm not certain of what it is that needs reassuring. I just feel weird about the whole conversation.

So then there's the kicker and I think the REAL question she wanted to ask.

She says "is your illness physical or mental?" I could not believe she just asked me that question. My voice went flat and I said one word: physical. She says Oh, okay. I add "I wish it weren't."

I get off the phone and find myself having all sorts of conflicting feelings. Is this a foreboding of what is to come? Is she going to be an intrusive landlord? I had a brief feeling of wanting to call the whole thing off. It was really a strange conversation. She did ask my references if I had a drug or alcohol problem.

I just hope SHE isn't loopy and show up unannounced at our doorstep. It would put a real crimp in my heroin use.

Was it because I put that I was on SDI that she thought it was okay to ask that question? To even inquire about my illness at all felt weird. I understand if it was in the spirit of caring but it felt more like I was being interviewed and a little grilled.

At the very end of the conversation she says "oh I didn't cash your check you gave me." I'm like, "uh, okay" and thinking "why is she telling me this." She says I figure I won't cash it until the lease is signed.

Tuesday, November 18, 2008


Someone who also has cfids shared with me her definition of faith:

"A long perseverance in the same direction".

This mold journey is daunting. The good news is we got the apartment. Thank goodness. Only 3.5 weeks left in this moldy place. The landlords here were great. We provided them with a copy of the mold report. They will refund the full deposit. They have been great landlords, just not very diligent about mold. But now they have a report saying there is toxic mold and bacteria in the walls so hopefully they will do a remediation so the next tenant won't have to suffer.

I've been communicating with a few other mold patients. These guys know their mold stuff. It hasn't been easy to take in what they say. They are advising to either toss, sell, or put everything in storage and slowly bring items into the new apartment to see what my reaction is. If I react, the item gets tossed. It makes sense and it would be nice to do this the right way in order to give me the best chance of healing. It's very confusing. I don't want to believe that nothing from this apartment is safe. I'm not materialistic. I find meaning in things other than material things with the exception of cool electronics. There are some things which are here that have a lot of meaning to me though-like my mom's antiques, my books, my dissertation, and a few other things. They are recommending we even get rid of the bed. It's hard to wrap my mind around. We can't afford to replace all this stuff. I guess non-porous materials are safe.

So I'm in the process of trying to find out other solid sources of information to see if it's necessary to be that radical. And this in the face of no guarantee that I'll improve. I have a feeling I'll gain some improvement.

I watched a series of videos that Dr. Shoemaker made. He's doctor who has written extensively about mold. His website is It was really interesting and a little frightening to think of the damage that has been done to my body while living here. I have all the signs, including lab tests, of mold poisoning. It would explain my shortness of breath too. I don't think it will be a cure but it lift a big load from my body.

Right now I'm in a big crash. I can barely get out of bed I'm so fatigued. Too much stress-emotional and physical. Last night I was talking to a neighbor and suddenly felt like I was going to faint. I had to sit down quickly. I felt rude because she was in the middle of telling a personal story but I figured sitting down suddenly would be better than scaring her by fainting. Sitting didn't work so I told her I was dizzy and immediately went inside. I laid down on the couch and broke out into a cold sweat. While laying on the couch I could smell mold so I forced myself into the toxic bedroom. I felt weak and shaky the rest of the night.

The people who have practiced mold avoidance have had rather dramatic recoveries. One woman was bedbound and needed help going to the bathroom and eating. It turned out she had toxic mold. She and her husband left sold their house and left all their belongings behind. Though she still struggles with cfids she is able to get out of the house and go hike in the mountains.

Meanwhile I continue my journey of long perseverence in the same direction.

Monday, November 17, 2008


So we put in our application for this apartment, along with a check for first, last, and deposit. The woman said she would check references ect. We've gotten word from all but one of the references that she has contacted them. We still hadn't heard anything by last night so we called to say we're wondering if she'd made a decision because we'd really like to give 30 days notice. The woman says "go ahead and give notice" but I still need to check the rest of the references Huh? That makes no sense. Now, here it is late Monday afternoon and STILL no word from her.

I'm becoming quite frustrated. Does she understand that we don't want to pay double rent. She hasn't offically offerred us the apartment-the closest was saying go ahead and give your notice. I'm left scratching my head. So, we've decided to go look at another apartment tonight.

Really, I shouldn't go out to look at another apartment. I'm crashing badly from all the stress and activity. I spent the morning talking to my attorney and filing for the appeal. Then I had to fax recent lab reports along with the mold report. So I haven't had a chance to rest and my body needs it.

The update on the SSDI is that most CFIDs cases end up having to go before a judge. That will take 12 months. It's crazy. So we'll have to figure out a way to make ends meet. We have to move, we have to get rid of a lot of possessions because of the mold.

As bleak as this all sounds I still believe things will work out. Daphne's friends and family have been supportive beyond belief. It's been moving to have people come up with suggestions. Not only that but they have been in constant contact, checking in. They get it how difficult this is and what a nightmare this is.

The thing that is most important right now is for me to watch my stress level and my activity level. I can't afford to go into an extended crash and I can't afford to become bedbound.

I've always been of the belief that I can use my own suffering to benefit others even if it's something as simple as sitting with someone who is undergoing a dark night of the soul providing a silent deep understanding that "yeah, I get it. I've been there too and I've survived." I hope to return to some level of functioning so I can provide a fight for the CFIDS cause. It's a vastly underfunded, ignored illness. I think that CFID's organizations should be on the list of charitable organizations that businesses donate to. There also needs to be funds set up for emergency situations to prevent people from becoming homeless or provide emergency medical care or emotional support. There is a lot of work to be done. I'd love to start a residential program. I just need to get well or better.

Saturday, November 15, 2008


I'd thought I'd do a little catching up on blogging. I spent three nights at my sister's house hoping that getting away from here would help me feel better. I ended up feeling a lot worse. I originally thought it might be because my body was starting to detox the mold toxins but after conferring with some online mold experts determined that wasn't the case. Apparently mold detox doesn't' occur until the body recognizes it's in a safe (non toxic) environment which takes at least a week.

We've looked at several apartments finally finding the right one (praying that it doesn't have mold in it). The landlord is checking references so we should find out in the next day or two.

This process has been very taxing on my body. My nervous system is a wreck. My brain functioning has improved a little bit. I'm guessing that's because of the cholestyramine.

Yesterday was an interesting day. I was sitting on the bed with my little Katie (my beloved kitty). A red breasted hummingbird suddenly appeared at the bird feeder dangling from the bedroom window. There is no reason why a hummingbird would visit this feeder-it's not on correctly, the food is old, it is right next to my almost deaf 85 year old neighbor and his cat (who hangs out on the porch about 2 feet underneath the feeder. In the year that it's been up no hummingbirds have come.

I took it as some sort of sign from my mom. I'm still trying to figure it out. One guess is to hang in there and that she is watching out for me. I got a letter from SSDI yesterday afternoon denying me for the second time. The notice stated the letter from my MD wasn't sufficient because it didn't provide evidence. And it cost $165 for the doctor to write. Probably took him 10 minutes at most-he should have included some test results. Anyway, it said his letter was contradicted by another MD report which stated I could "walk and stand for 6-8 hours per day, lift 20 pounds, etc..." It's crazy. I worked hard since I was 16 paying into the system and now I can't get the money owed me.

A little while after the hummingbird left I overheard knocking on my next door neighbor's door. Then a man saying "hello, are you alright? hello? is everything okay?" I jumped up worried that my neighbor had had another stroke (I've had to call 911 on him 2 times in the past year). As I headed outside I heard the man say "I was just walking my dog and saw water pouring out your window over the garage!" Then I heard my neighbor say "I forgot to turn the f****** water off." The poor guy. And the poor building. This will be the third major water leak in this building in the past year. And it was already water damaged.

Clearly we have to leave so it was a relief to find a cute apartment in a safe neighborhood. I have to trust that financially we'll be okay. I'm going to have to get better enough to pull in some money under the table.

I have a lot of anger at the system. Even though my attorney said more people get denied at this stage than originally I thought for sure that given that I've worked hard, had letters from doctor's, that the decision would go in my favor. I get angry at the billions of dollars provided to Wall Street to corrupt, greedy CEO's when it's hard for someone who is as ill as I am to get approved for SSDI. Thank goodness a Republican isn't in office-they only seem to think of money and how to get more.

Monday, November 10, 2008

Mold Report

I got the mold report today. There are several species of toxic mold found in the wall. One of the molds is often found the the well know toxic black mold called stachybotrus. A couple of the molds plus the bacteria found in the wall are consistant with very bad water damage. I think this is only the tip of the moldy iceberg. My guess is that stachy is also in the walls. The plan is to move.

Here is a copy of the report:


Chaetomium murorum
Penicillium sp./Aspergillus sp.


Aspergillus ustus
Chaetomium murorum
Penicillium aurantiogriseum
Penicillium brevicompactum
Penicillium sp.
Rhizopus stolonifer

General Comments and Health Effects

Our analysis of the above tapelift sample found evidence of mold infestation in the bedroom sampled in this unit. All molds require at least an elevated level of relative humidity to germinate and grow indoors and these are no exception. From the chain of custody I can see that you have identified one source of moisture, a water intrusion under the window. It is crucial for the success of long-term mold eradication that the source of the moisture supporting these colonies is promptly and permanently fixed. Without first addressing the underlying moisture issues in this unit, the molds will simply keep coming back each time the moisture returns. Due to the presence of several molds that may pose a health risk (see below) I'd strongly urge you to contact a professional to investigate and possibly remediate this site. Cleaning it up yourself may further expose you to these potentially harmful fungi.

Many of the molds found in your bedroom have the potential to adversely affect your health. In particular, the four species of Penicillium and Aspergillus found in this sample can produce huge numbers of dry spores which are easily lofted into the air and are slow to settle. Spores from any species of Aspergillus/Penicillium should therefore be presumed allergenic. In addition, Penicillium aurantiogriseum makes the mycotoxin auranthine which is reported to be a kidney toxin; I find little in the literature on this, but it could conceivably be important. The mold also makes several other compounds which may be of concern but which are little studied. Whatever its toxicity, this mold and close relatives all produce dreadful odors in culture, essence of dumpster and garbage.

Lastly, the Actinomycetes found in this unit are not molds at all, but filamentous bacteria. They produce huge numbers of really minute dry spores which are probably allergenic, since their small size would allow them to penetrate respiratory passages efficiently. Actinomycetes typically grow in wet sites and are part of the wet wall syndrome. These bacteria are typically ignored in mold reports - but they should not be. Workers in Finland have reported that some Actinomycete spores, unlike most toxic mold spores, may actually trigger inflammatory responses in the lungs.


Given that my body can't process mold toxins in general, the presence of toxic mold is great cause for alarm. I'm glad to have this report and extremely grateful for the person who sent me the kit to get the mold analyzed.

I just wish my doctor had listened to me back in April when I first brought this up. I may have irreversible neurogical and immune system damage.

Wednesday, November 5, 2008

Preparing the Ground

I spoke with my doctor this morning. He was puzzled once again at my test results. He thought for sure the RNase L panel would confirm for him that I have an active viral infection. He said "the test says you don't have an active viral infection but I don't believe it." Great. Then why did I have to pay $445 for it. He said some sort of inflammation is causing the RNase L Protein Quantitation to increase. I asked if mold can do that-he said yes.

I created a grid with my symptoms, lab results, environmental factors to try to figure out how much of my illness is due to lyme, mold, and/or viruses.

Based on the petri dish results he thinks mold is a problem. Since I have the double barreled shotgun of not only a multi susceptible genotype but also a mold genotype, it makes mold toxins a poison. I can't remember if whether I wrote about it or not but I've brought up the possibility of mold toxins the first time I saw my doctor back in April, 08. He dismissed it as a factor because neither one of us was having allergies. Well, I have since learned that mold poisoning and mold allergies are very different. An way, he gave me some petri dishes to put throughout the apartment, a rough experiment to see whether mold is a factor. He explained the directions and said if there are more than 5 colonies in the petri dishes, that indicates a problem.
There were anywhere from 16+ colonies to 45. When my doctor heard that he was shocked.

He said that my body won't be able to heal as long as it's being exposed to mold like this. We don't have the results yet from Mould-Works to see whether the mold in the walls is indeed Stachy (the toxic black mold). Regardless, the toxins need to get out of my body. They are wreaking havoc with my central nervous system. My doctor said his mission is to find out what is causing the inflammation in my body. He also said the weight gain is from inflammation and no matter how much I exercised or how little I ate that this would be a problem.

So the next part of my healing journey is to find another place to live. And quickly. My question is okay so that's the next step. In the meantime my SDI runs out in December and I haven't been approved for SSDI. I also need medical care.

Never in my wildest dreams did I expect to be facing anything like this. I worked hard dedicating myself to be in the service of others. It's where I found my sense of meaning. I ran community mental health programs. I was the director of the North Bay Homeless program, residential program, case management program, and transitional housing program. I worked my butt off for my PhD.

And look what happened. Sometimes I go numb with the shock of it all. It goes to show that there are no guarantees in life. There just aren't.

At bottom though is that my body needs a place where it can do some healing. I've got to get the toxins out of my body. Then we will evaluate for antivirals. I asked my doctor about taking an antiviral now. He basically said it would be pointless as long as my body is exposed to the mold.

In the meantime, my central nervous symptoms continue to progress. My autonomic nervous system is having problems resulting in some symptoms one of which is feeling like I want to faint sometimes after standing up. It doesn't hit me right away. It can hit later. He explained something about blood vessels. I went blank as he was talking. This is something I didn't want to have happen. My illness is progressing. In addition to the autonomic nervous system dysunction (there's a good website called National Dysautonomia Research Foundation) I'm having increasing sound, smell and vibration sensitivity.

Stachybotrys is a greenish black looking mold. This is what I found behind the peeling plaster in the part of the wall (I can't remember what it's called). I just hope it's not Stachy. If it is I'll have to vacate immediately, even if that means living in a tent.

Even though I'm overwhelmed at the though of moving and it's the last thing I want to do the truth is I don't like this apartment. It has never felt right. I remember when we looked at it. We were standing in front of the living room window. Something didn't feel right to me. It's nothing that I could explain logically. I remember saying something to the effect of not wanting to move in but it had everything we were looking for at the time. I think one lesson in this is for me to listen to that small voice that says "not this or not that or yes this." It's that wise part of us. It might be God speaking every so silently in the inner recesses of the soul. I believe that there is a God who wants very much for us to heal and live a full rich life. We just have to get quiet enough with ourselves to listen. Or at least I do. I just didn't want to hear what was being said.

I don't think moving will cure me although if it did I would be ecstatic. I think it will give me back more functioning maybe just 10%. But moving will give my body the necessary healthy soil it needs to start doing some healing.

Last night though was something. Watching Obama get elected was deeply moving. I cried with tears of hope at his election. I still cry when I see it on TV. It's truly amazing. I'm glad I got to witness it. I wanted to hear the words as they were being spoken on TV.

Tuesday, November 4, 2008

November Blues

I've spent the better part of the day in bed. I managed to make it down the block to vote. I felt pretty woozy in the voting booth and got a little worried that I'd have to sit down. Luckily I made it through and was able to vote.

I haven't been feeling well. That's a bit of an understatement. Physically I'm not well but I've also been in a bad depression and really wanting to chuck it all in. Logically I know this is part of the illness plus the situational circumstances of having a severe case of chronic illness.

I may have a lead on a new doctor. Yesterday I called someone who I've never spoken to before but I needed help and was desperate enough to toss away my pride and insecurities and make the phone call. This woman suffers from lyme and cfids but primarily lyme. She's been sick a long time and knows a lot. She said she thought I needed a new doctor and recommended the Holotorf Group. She said they are great for testing but she didn't have a good experience with treatment. She lives in Illoinois. Anyway, then someone else whose opinion I highly regard also recommended the Holtorf Group (Sue Jackson). I emailed them. They charge $395 for the first two visits. Ouch. They provide a superbill to provide to insurance. Their website was impressive. They have a well thought out treatment plan posted on their website. What is also compelling about them is they do a lot of testing which I need.

My CFS doctor has been so wishy washy. I really want to have a sense of direction and a feeling that I'm doing the right thing for my health. It feels like he's just guessing half the time. If he would run more tests on me I think I'd have some more answers.

The rain the past few days has been just depressing. The apartment feels damp and drafty when it rains so I can't get comfortable. I'm tired of living here. I don't think that mold caused my illness by any means but I don't think it's healthy for me to live in a place that has as much mold as it does. I also don't think the dampness is a good sign.

One thing I struggle with is how powerless I feel in the face of this illness. I don't get to choose when I can do something-the illness does. If I feel bad I can't follow through. These days I feel bad 100% of the time so end up feeling like I'm just existing. Surviving from one day to the next. And I feel like a burden so that doesn't help. I don't know how to move past these things. I hope and trust that the acceptance or answers will come in time. I don't like feeling like I'm just surviving my life. That's no way to live. Even worse is the sense of futility and uselessness I feel. It's why I'm so moved at having connection with people. For that moment or those moments I feel uplifted. It's just that the connections are few and far between. I need to get well enough to have more connections even if just through the computer. I keep readjusting my expectations of life. I used to hope I would be completely cured. While I'm open to it and would love it if that happened, it's no longer something I strive for.

I just want to have a sense of meaning again. And a sense of peace. I'd like to feel like I mattered to people-that I'm not a burden or an obligation to endure. I'd like to feel like I make a difference-even a small one. It's hard to do when my illness it's at its peak.