Wednesday, November 25, 2015

The Absurd

I’m not sure how to write a post anymore! I’ve been gone so long from this blog, behind on emails, behind on everything.  I've been struggling emotionally as well as physically. I'm full of fear about what my future holds. There's also a sense that not only are things as good as they are going to get but that my quality of life will continue to decline given the extremely limited options I have for my future.

I feel like I’m living an absurd post-apocalyptic life.  I remember watching the movie ‘Wild’ with Reese Witherspooon. I found myself identifying with her journey, navigating difficult territory when alone. Except, unlike the character in the movie, there is no destination, no happy ending at the end of my journey.  Similarly I’ve been reading post-apocalyptic novels that feel strangely familiar.  I realize I’m living what feels like a post-apocalyptic life, except everything *looks* the same. It's just that it isn't the same. Not when you're looking at the world from this side of things.

A strange new level of despair began on my trip to see my ME/CFS doctor back in October. I realized I would never be able to afford to live in a city I wanted as well as other painful realizations. I remember the drive the year before I felt such relief to leave this area and such hope that I could find a place in an area that I liked.  This year the reality hit me.   The days following the trip I felt such grief.

It has only deepened with the holidays (which symbolize community, family, celebration), the light of the day leaving before 5,this pervasive feeling that I'm a failure, and a sense of dread about the future (so I have to keep reminding myself to stay in the present as well as reading a quote on my wall 'worrying won't stop the bad things from happening. It just stops you from enjoying the good').

It's difficult that I’ll be alone again on Thanksgiving. It’s not because I’m too sick to go anywhere but because I didn’t receive any invitations. I’ve been playing it off with my housemates saying ‘oh I’d rather be alone on Thanksgiving’. But I couldn’t hold it together the other day when a kind security guard asked what I was doing. I started to say ‘oh I’m so relieved I get to be alone’ but couldn’t finish the sentence because I had started crying.  I don't know why it's hitting me so hard. Maybe it's because it seems to symbolize so much.

Having an illness like this is absurd.  My financial situation is absurd. I have a student loan that uses up 20% of my income but it seems apartments, Medi-Cal, Medicare Extra Help, Section 8 (and on and on) don't factor it in when looking at my income.  So in their eyes I don't need help. Even without the loan things would be tight.

For the past 6 months I’ve been using all my spare energy searching for housing, trying to get on Section 8 waitlists, trying to figure out how to pay for needed screening test such as a colonoscopy (I’m overdue for over a year--I’m supposed to have them every 3 years due to a pre-malignant polyp), a mammogram, an endoscopy, and a lot of dental work.

Every night and every morning (and creeping in during the day) I experience a sense of panic about my housing, money, health, etc.....I’m terrified of ending up in a moldy, roach infested low income apartment and becoming really, really sick again.

Things that initially sound promising haven't turned out to be so promising.  I’d found an apartment I could afford with absolutely no problem.  It's cheaper than what I'm paying now, it’s new, and I could even afford cable. The property manager left a message for me. I was thrilled (thinking things were finally turning around) so I called him back only to hear him say ‘you make too much money’.  I was shocked. He said he’d see if I qualified for another property he managed that was more expensive and I made too much money for that too!

I went to a legal health clinic and found out about the 250% working disabled program. You can make as little as $5 a month. It would have allowed me to qualify for Medi-Cal which meant Med-Cal would have paid my Medicare Part B premium which would mean saving $84 per month.

Ten days after I applied I received a letter from the County stating they were discontinuing my food stamps because my income had increased. Absolutely absurd.   And, I would have to join a managed care Medi-Cal plan which would be fine if I had an illness that was real and could get treatment for it.  But the managed care programs will not honor prescriptions written outside the system so any prescriptions that my ME/CFS doctor wrote would be out of pocket expenses making them unaffordable.

So I could get into the 250% working disabled program, lose my food stamps and not be able to get any treatment for ME/CFS. But I'd save $84 a month which I desperately need. Absurd choices. I would also have to purchase managed care dental insurance so the $84 per month I thought I'd be saving has turned into about $50.  I still need the extra money but not at the expense of my health.

The cheapest Medicare drug plan I could find has a $360 deductible. Between that and the $140 deductible for the doctor I'll start out the year with $400 in debt which is absurd.

Life is no longer going towards something I want or having to decide between two great things. Life is now about figuring out which needed thing I'm going to sacrifice.  As if I'm living in a burning house trying to figure out what I can save.

So I’m in a bind. I make too much money for places I can afford and can’t afford the places I qualify for.  It’s absurd.

I’m pretty sure I’ll be given notice to move either after the Holidays or during Spring.  If I don’t have a housing situation lined up I’m going to be homeless.  I have been putting ads up on craiglist for house shares for months. I have yet to find one. I have a lot going against me. I’m older, home all the time, and have a cat (who I can’t imagine being without).

And then there’s the homophobia.  I called a low income housing place in a small conservative town to request an application to get on the waitlist.  The woman was nice until I asked about openness to gay people.  There was silence and then she said “If you qualify to live here we HAVE to take you. Legally we HAVE to take you. I can’t tell you if residents will accept you but if you apply here and qualify we don’t have a choice”.  She repeated herself 3 times. It was quite awkward. And they never mailed me an application. I’ve requested one on several occasions. There’s no way I want to live there but I’m documenting what dates I’m calling, who I talk to, and then I will file a complaint.

This illness may have taken everything away but I refuse to go back in the closet.  I refuse to not be who I am. And I refuse to rewrite my history.

My biggest fear is mold (and roaches) That can take me down quicker than anything else.  I have yet to hear of anyone not having issues with mold in apartment buildings.  I can't afford to go back to being bedbound because I have no one to help. Living in a moldy apartment again feels akin to stopping chemotherapy for terminal cancer.

The one thing I enjoy right now is being outside with the chickens and the cat that has charmed his way into my heart.  I was outside for 8-10 hours a day during the Summer It's tough right now because it gets dark at 4:47 these days so I only have about 4 or 5 hours.  

I've only been sick for over 8 years. I have no sense of home, anywhere. I have no sense of family, no sense of community. I've pretty much disappeared from the online community because I've been so focused on these other things.  And I'm tired and weary and losing my will to keep fighting.  I'm doing so much work but it feels like I'm spinning my wheels and getting nowhere.

The ME/CFS community is really the only place I feel seen, heard, believed. There's an understanding and level of empathy that is unparalleled .

Things would feel doable if I had a sense of community much less some help.

It's difficult figuring out what to expect from life anymore. Am I going to get really sick again, should I keep trying to make friends with healthy people, is this how the rest of my life is going to be?  If so, I hope it's a short one. 

In terms of treatment I've started on LDI (Low Dose Immunotherapy) in the hopes of halting this downslide.  I don't have the energy to go into detail about it but the short version is that it's supposed to retrain the immune system to respond a bit more normally to pathogens/toxins.  I'm starting with the one for lyme/co-infections and then do the one for MCS followed by mold.  It takes a long time to find the correct dose.  We'll see. 

Wednesday, February 11, 2015

Thoughts on the Name Change

I'm sure most people have heard by now that the Institute of Medicine (IOM) committee has proposed changing the name of this disease from Chronic Fatigue Syndrome to Systemic Exertion Intolerance Disease (SEID).

I have purposely avoided reading blogs, news stories, facebook postings because I wanted to digest the information without any other input. I first heard about it from another blogger on facebook.  I was initially excited that maybe they would get it right and find a name that would capture the devastating nature of this disease. But when I read the first part of the blog I felt a bit like I'd been punched in the stomach and couldn't read any further. It had nothing to do with the blog because it is an excellent and informative blog. Probably one of the best out there.

I spent the better part of the night and some of today thinking about why I had such a reaction.

The local cfs group had a number of postings on this. The only post I read was that it was on many news channels.

I like that they used the word "Systemic" and "Disease" in their label.  I do not like that the focus in the name is "Exertion Intolerance".  Here's why:

I think that people who do not understand this disease and who are already biased about CFS being psychologically based rather than physical may view this as another fancy way of talking about being tired.

I do not like that there is an implicit blame in the word "exertion intolerance".  It makes it sound like we're sick because we are exerting ourselves too much and all we need is rest.

In a society that is so intent on being busy, most people tend to read the headlines. The headline for this disease is SEID.  I'm not sure people will look deeper to find that "exertion intolerance" is the result of an immune system gone awry, central nervous system issues, digestive issues, autonomic nervous system dysfunction, neurological abnormalities, swollen lymph nodes, low grade fevers, system wide inflammation (as Stanford has found).

I do not think that SEID does justice to the 34 year old woman Vanessa Li who was recently died of what they think was heart failure.

I can see myself showing up for an MD appointment and having the doctor prescribe nothing but "rest". Granted it's better than being given a prescription for an anti-depressant but we need more than just rest.

I know that I've had improvement with using off label medications such as antivirals, antibiotics, medications for my heart (as well as getting out of mold).  But if MD's view this as an exertion disorder will they want to look any further?

I worry it's a gateway for the medical community to prescribe GET (graded exercise therapy, CBT, and rest).  I fear the name won't promote more research.

There are new diagnostic criteria that do not reflect the International Consensus Criteria but resembles the Fukuda definition  I'm concerned that with the new broad diagnostic criteria that this disease will not only be over diagnosed but that people will be misdiagnosed.

When I show up in an MD's office complaining of weight loss, lack of appetite, nausea, and other symptoms, they start thinking cancer and order testing that I can no longer afford (CT scans, MRI's, etc).. I don't want to go through testing. When I talk to my SEID doctor (haha) about the same symptoms he knows it's part of the course of this disease. He'll order blood work to rule out infections and will tweak my treatment (which has always helped).  I do not think this new name will promote treatment like this. Treatments that will actually help us have a better quality of life rather than just surviving with resting.

The fact that is has garnered such media attention and that it has the words "systemic" and "disease" offers some protection against MD's who look at us with scorn and judge us as nothing but complainers with psychological issues.  That is a very, very good thing.

Part of the name relieves me of an emotional burden that all of us carry. That of trying to convince people how serious and how real this disease is.  It has been beyond frustrating having to convince MD's, potential friends, everyone that this is not in my head.  It has been difficult to be told time and time again "I'm tired too" or "if you exercise you'll feel better" or "you need to push yourself" or "you need more protein".

So for that I'm grateful that they used those two words "systemic" and "disease".

But today, as I was telling my therapist of the name change, I realized I was embarrassed by this new name.  It just sounds not right. It feels akin to labeling someone who is paralyzed as suffering from "Systemic Standing Intolerance Disease".

Sunday, January 18, 2015


When first sick I read the book The Alchemy of Illness by Hillary Duff. I actually don't remember much of the book except for one quote which I wrote down and promptly lost with the four subsequent moves that ensued.

Among the many difficult things that come with a chronic illness, especially one that carries such a stigma, is trying to get people to understand what it's like. Because it's so challenging on so many levels.Things I would never have thought of when I was well.  

The financial stress alone is almost unbearable. I never, ever thought that I'd be on food stamps much less twice going to use my food stamp card and get told by the checker that I don't have enough money on it to purchase the food. It's simply humiliating. I also never, ever thought I'd have to go without needed medical procedures or that buying a pair of shoes would cause me to fall short on rent. A freakin pair of shoes for god's sake!!!

I also never thought I'd experience the depth of loneliness, isolation, despair, fear, and the worst, deepest, darkest depression that has been going on since June.  I can't tolerate antidepressants so I'm gritting it out day by day and sometimes minute by minute. My last hope is Ketamine but I need to see my M.E. doctor in person for the prescription. But for those things I need money.  

Likewise, I have come to realize that many people are deeply disturbed by my continuing illness; they want to help but also need to reassure themselves that disasters like disease can be avoided and, if necessary, easily remedied. It's hard to swallow the fact that we have little or no say over the extent and timing of our illnesses.

Sickness is seen not only a breakdown of health, but a personal failure, which explains why so many people feel so guilty and ashamed--or angry at anyone who intimates they have done something wrong. From quotes on the web by Hillary Duff:

When symptoms persist and illness becomes chronic, we often find fault with the victim, we call it a lack of will power, a desire for attention, an unwillingness to work or change, rather than question the hidden assumption that it is within our power as human beings to overcome sickness and, in fact, it is our job to do so. 

So many times I've heard "if you change your thinking you'll get better" or "the mind is a powerful thing and if you put your mind to it you'll get better".  I so wish that were true. God knows I've tried.

In a perversion of recent discoveries of body-mind unity, self-help books encourage sick people to cultivate positive attitudes--faith, hope, laughter, self-love, and a fighting spirit--to overcome their diseases. As a result, many sick people are shamed by friends, family, or even their healers into thinking they are sick because they lack these "healthy" attitudes, even though illnesses often accompany critical turning points in our lives, when it is necessary to withdraw, reflect, sorrow, and surrender, in order to make necessary changes. 

"In health," wrote Virginia Woolf, "the general pretense must be kept up and the effort renewed--to communicate, to civilize, to share, to cultivate the desert, educate the native, to work together by day and by night...In illness this make-believe ceases...We cease to be soldiers in the army of the upright, we become deserters. They march to battle. We float with the sticks on the stream, helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time in years, to look round, to look up--to look, for example, at the sky."
When I moved here almost 2 years ago I had hope that I would make friends, save some money, have a connection with housemates, and things would get better.  

They aren't. In fact it's gotten worse in ways I didn't anticipate and in ways I couldn't imagine.

I'm tired of bearing all of this by myself. I've had to drive myself to and from painful medical procedures and then have to climb the stairs to my room where I stay and deal with the after effects. Tomorrow I have to have a steroid injection into my big toe because I have a bunion and bone spur causing pain and swelling. The shot goes into the bone. The last time I had it I almost passed out from the pain.  I'm delaying getting my tooth pulled, a colonoscopy, and endoscopy because they all require a driver and someone to stay with me for a few hours after.  

When I look at my future my depression deepens to a point that's simply scary. I do not want to live in a loud, roach infested, moldy, chemically laden apartment that low income people end up in.  In fact I refuse to do that. 

Forget dating. I read profiles of people and am struck by how much is based on activity.  

Friends?  Not with healthy people unless they are pretty special.  

Increased income?  Haha.  

A sense of home and community?  Doesn't look like that's going to happen either.  I desperately want to live by myself so I at least don't have to waste energy on housemates.  

Is there any quality of life left?    I'm still searching.  My living situation is killing my spirit and soul. It's complicated and too lengthy to go into here but trust me...

So I don't know what to expect from life anymore. I don't see anything improving. I'm developing joint pain in my knees,toes, hip, my back is a complete disaster but I can't get my doctor to do a thing about it, I have a tooth that needs to be pulled, a likely root canal on another, and a cavity that has gone untreated since Sept 2013. 

If someone would have told me as I was being congratulated by my dissertation committee after defending my dissertation (and told I needed to publish it) that I'd be writing a post like this I would have laughed because I was on my way and was finally getting everything I'd ever dreamed of--a teaching position, pressure to publish with the right connections, a growing practice, and more.  

My energy right now is taken up by grocery shopping, medical appointments, dealing with housemates, medical bills, taking my lemon of a van to various mechanics. I don't have anything left over anymore. I don't have the energy to fight internal or external battles. 

I need some things to change. Desperately. And soon. But I do not see that happening. 

I feel as if I've entered a new universe. One I don't want to be in but can't leave.  

Monday, December 29, 2014


Toxin-Induced Loss of Tolerance=TILT=Environmental Illness which seems to be where I'm heading. 

I am having increasing symptoms upon encountering certain chemicals, molds, foods.  MCS has been an issue for me off and on since getting sick. Until now it has been relatively mild with a brief period where it was more than mild but not moderate.

My reactions are spreading to a wider field of toxins. Things that never bothered me before now bother me. 

Now it's moderate and sometimes severe. I noticed it has increased rather dramatically with all the rain. This is the first Winter where there's been a lot of rain. I smell mold everywhere--my van has a big moisture problem and smells like mold.  

I went into Walgreen's to get medications but was unable to stand for more than a minute or two at a time. The poor pharmacy tech--she had to wait while I kept going to sit down before passing out. I told her I was coming down with something.   

Yesterday I went to the bank but once inside again was unable to stand. I got to the ATM then had to kneel down to finish the transaction. I kept thinking I just need to go outside to get some air. Luckily there was no one else inside. 

I feel better outdoors. Since moving here I've been spending most of my days outdoors whether it's freezing cold or not. I simply have to now. The only thing that keeps me inside is the rain.

Lately I wake up feeling really badly with similar symptoms I had while living in Alameda and Oakland.  After I've been outside for awhile I start to feel better. I can think a bit more clearly and I don't feel as stuck and hopeless.  

I'd never heard of TILT until a friend with EI mentioned it and referred me to an article that a mutual facebook friend wrote. Jill Neimark is an award winning science editor and author. She also wrote a beautifully poetic piece called The Camping Cure which is worth a read. And another excellent article about TILT by Jill called Is the World Making You Sick.

Claudia Miller MD, MS writes extensively about TILT. She states that TILT is a disorder caused by exposure to harmful chemicals. The exposure can be chronic low level or acute such as a pesticide exposure (ariel spraying etc...). She notes there are three steps:
  1. Initiation by a chemical exposure or chronic low level exposures that causes a breakdown in the ability to tolerate them. Followed by-
  2. Triggering of symptoms by common foods, everyday low level exposures, and medications
  3. Masking, which hides the relationship between exposures and triggers
Dr. Miller talks about the two stages involved in TILT:
First is the loss of tolerance (possibly but not necessarily due to sensitization) following acute or chronic exposure to various environmental agents such as pesticides, solvents, or contaminated air in a sick building. Second is the subsequent triggering of symptoms by extremely small quantities of previously tolerated chemicals, drugs, foods, and food and drug combinations (Figure 2). Although sensitivity to chemicals may be one of the consequences of this two-stage process, the term chemical sensitivity does not appropriately describe the process involved.

In the genetically vulnerable, too much toxic exposure seems to recalibrate the body for life. “All changed, changed utterly,” as poet William Yeats might say; a new person emerges, for whom the ordinary world is now littered with seemingly toxic land mines, often not perceived until stumbled upon, and yet the sufferer looks on as others blithely dance over those same land mines without the hint of a problem.....
....Exposures result in a bewildering variety of symptoms such as cardiac and neurological abnormalities, headaches, bladder disturbances, asthma, depression, anxiety, gut problems, impaired cognitive ability and sleep disorders.
I'm starting to do a lot of reading on this. I need to stop it from progressing or else my alternative will be that I need to sleep outside.

But it might explain some of the deep depression that has been occurring. Lisa Petrison, PhD and Erik Johnson wrote an article called The Depression Response which I find fascinating. There is also an article written by Mary Ackerley MD called Brain on Fire

I apologize for the poor formatting. I can't figure it out right now.

Tuesday, December 16, 2014


I can't believe it's been close to 4 months since I last posted.  It's been a long tough 4 months in many ways.  But then this entire journey has been tough.

I have been in the depths of a mean depression. It's mostly situational---but also affected by toxins and this freakin miserable fog/inversion layer. Inversions trap toxins which creates an increase in inflammation causing an increase in all my symptoms.

There are times when it all feels intolerable--the financial situation, the isolation, not being able to afford the medical and dental care I need, not being believed, the stigma, difficult living situation, and a lot more that is simply too much to write about.

I find myself continually adjusting to the persistent winnowing away of money, things, relationships, expectations, hope. It feels like it never ends.

Abraham Maslow wrote about 5 fundamental hierarchical human needs. The lower the needs in the hierarchy the more important they are and if not met can make it difficult, if not impossible, to pursue other needs. The most basic need has to do with physiological needs such air, food, water, metabolic processes. The next level has to do with safety and security--things like having enough money, shelter, resources. I'm dealing with the most basic human needs--in fact, I can't even meet my most basic needs---can't afford the medical/dental/vision care that I need nor do I have a reliable car nor can I afford to eat like I should eat.

I've been struggling for a long time with having enough money for groceries due to all the medical bills, dental bills, car expenses, cat illness. I tend to run out about 10-14 days before my check which isn't so bad. It's that I don't have enough money to eat 3 full meals a day. For my birthday my sister took me grocery shopping at Whole Foods. I was overwhelmed with all the choices and couldn't think. Everything seemed so expensive. Quite a contrast to how things were prior to getting sick when I didn't have to think twice about what sort of food I could afford.

It was heaven to eat like that! For one week I had healthy, yummy things to eat.  The things I ate tasted so incredibly good. I enjoyed every bite.  And it made a difference in how I felt emotionally. For one week I didn't have that constant sense of deprivation. I didn't stare longingly at my housemate's orange juice, or enchiladas.

Financially things continue to be difficult. I think I talked about my car going out and buying a van. I thought I could trust the woman who sold it to me so I didn't do the usual have her meet me at a mechanic's shop. She was 72 and a therapist so I believed all the great things she wrote in her ad on craigslist.  She told me it was in great shape--had new brakes, new battery, never been in an accident, and so on......and wouldn't need any major repairs.  I should have trusted my gut because I've had to replace the front brakes (including rotors), the battery, it needs tires, runs hot, and it smells like mold something which didn't become apparent until the first time it rained. I'd had the seats taken out so I could convert it to a camper van but the's sort of unbelievable that it smells like mold given my history with mold but there you have it.

I'm having teeth issues. I need to have an upper tooth pulled due to a failed root canal. I also have a cracked bottom tooth.  

I'm dealing with medical issues unrelated to ME---my thryoid went completely hypo so I had to double the Nature-Throid.  My back is as disabling as the ME but I'm unable to take NSAIDS due to chronic gastritis. I'm also dealing with a bunion, bone spur, and arthritis on my big toe and still dealing with whatever I did to my knee when I fell about 5 months ago. The knee thing is getting worse. I seemed to have developed arthritis suddenly in both knees but the left one at times is so painful I'm unable to put weight on it to climb stairs which makes it a bit difficult since I have to climb stairs to get to my room.

I saw my ME doctor in September. EBV went sky high again, Calcium was high, Vitamin D was high, IgG subset 1 and 3 still low.  More on the appointment in a later post.

I've definitely taken a hit in functioning since the fog/rain/Inversion. My MCS has increased again.

I have to find a way to move to a drier climate and I could really use some hope.

I have a number of posts I want to write----on not being believed and how that eats away at one's spirit---emotional regulation (I think the parts of our brains that are affected make us susceptible to not being able to regulate emotions all that well).

Tuesday, August 19, 2014


Since getting sick it feels like I've been fighting battles but life was easy compared to how its been since dropping into the poor bucket.

The good news is I heard back from Stanford. There are still 2 studies ongoing which explains the delay in publication. All three will be linked and important to I'm glad they are being thorough.  I mentioned I hadn't received my results because I had moved. The researcher was kind enough to look up my information and said based on my scores I fell into the 'severe' category.

Given how severely sick I was I have felt lucky to be one of the one's to have significant improvement with the use of antivirals, thyroid/immune support, etc...combined with getting out of toxic mold.

However, I'm lapsing back into the moderately severe category now. It's alarming. There are a lot of contributing factors. It appears the manufacturer has stopped making Imunovir, there has been ariel pesticide spraying, my antivirals have stopped working, as well as increased stress with all the financial crap, my kitty being sick, tooth needing to be pulled, housemate stress, etc...

It's not good to have housemates when what my body needs is rest and no stress.

Unfortunately, despite my asking my one housemate continues to use dryer sheets that send my MCS through the roof. In addition he just started using a plug-in air freshener that is also sending me through the roof. I thought we had an understanding the last time he did this that it would not reoccur again but apparently not.  Because he's co-owner of the house I'm reluctant to ask again for fear of being asked to leave. I"m now housebound 85% of the time again so I don't want to push it.

I'm feel like I'm being assaulted by chemicals which is just exacerbating all my other symptoms.

My labs came back with chronic reactivated Epstein Barr. My titers were very, very high. My doctor had predicted the Valtrex would stop working at some point. I'm lucky that it worked for almost 4 years but boy am I feeling the effects of EBV.

I'm having big time issues with shortness of breath and feel lightheaded along with what feels like my heart is straining. It's no unfamiliar. It's exactly what happened when I first got sick except the SOB is worse and the heart strain is worse.

My doctor wants me to try Viread which is an antiretroviral. It put Andrea Whittemore into remission at one point until she developed metabolic acidosis which is a potential side effect of Viread.

However, the copay is $227 which I cannot afford. There is a patient assistance program that my doctor's office forwarded to me. I'll apply. My dilemma is that Viread costs over $1200 per month which would mean I'd hit the Medicare Part D donut hole very early in the year so I need to think about it.

I'm also now clearly hypo-thyroid so have increased my dose of thyroid medication.  I'm not sure why my thyroid has become worse.

HHV-6 is 4 times the normal range but my IgG subclass deficiency remains pretty much the same.

Clearly I need to move so I can get away from all these chemicals.  My housemates happen to do a TON of laundry and the vent is below my window. Closing it doesn't help. The neighbors laundry vent also comes into my bedroom so it's simply a losing battle.

I'm responding to house share ads which also feels like a losing battle because again--once I tell people I'm home all the time or other information they need to know (since we'll be living together) they drop out. I don't tell people I have a chronic illness anymore-just that I work from home although that feels dishonest because when I'm sick like I am now it's really hard to socialize.

I'd prefer to live alone simply because it's less stressful all around but I need to move far away and I can't afford that expense right now.

My poor kitty is not feeling well. It must be side effects from the hyperthyroid medication. Or maybe he's feeling the assault of chemicals too. Or maybe a mold problem has developed. Who the heck knows?

So all around I feel like I'm fighting losing battles.  I wake up very, very depressed each day--like omg another day of THIS.

Thank goodness for Netflix streaming (can't afford to replace my broken DVD player), my cat, and my friends on Facebook.

I'm just taking things one day at a time right now.

Sunday, August 10, 2014

Every Which Way

I'd like to be posting about other things but life issues are getting in the way.  The financial aspect of everything is overwhelming.

My cat was diagnosed with hyperthyroidism on Friday. I thought it would be a simple thing of merely giving him a pill with some follow up testing. Nope. It turns out he needs follow up labs every 3 weeks for the first 3-4 months.  If I don't treat him his quality of life will be poor and short and I just can't bear that.  His T4 level was really high and one of his liver enzymes is elevated. It broke my heart to hear it.

The van I bought has all sorts of issues. Brakes, tires, the dash lights don't work. That 72 year old woman will be visited by karma I'm sure. I told her my financial situation and asked repeatedly if she was sure it didn't need any major work.  It's really my fault though. I should have taken it to a mechanic.

I still need my tooth pulled and have set money aside for that. I won't touch that money. I have to wait until after my doctor appt to have it out. I can't afford to get much worse right now. I have enough to just be able to afford the monthly payments as long as I have no other financial issues.

I need to see my ME doctor in order for him to continue prescribing medications which is fair. He's been more than generous to me. I scheduled an appointment for September 5. I just have to figure out how to make the 2 hour trip.

In making my list of symptoms for him so we could do some testing prior to the appointment I realized I'm doing a bit worse than I thought. Quite a bit worse in fact.

I emailed a list of symptoms--a long list so he sent a lab slip back for testing. He wants to test for EBV--thorough testing including a test I'd never heard of before called Chronic Active Infection.

He's also retesting Vitamin D--not to see if my levels are low but because EBV and Vitamin D deficiency are related. T cells which are one of the cells involved with EBV (along with B cells) cleave Vitamin D for some reason that I can't remember.

Along with hormone testing (thyroid, adrenals, progesterone, etc), HHV-6, he's retesting Immunoglobulin subclasses 1-4 again. I'm glad he's doing that. I had low markers for subclasses 1 and 3. My doctor said it needed to be treated--ideally with IVIG but it's too expensive given I have Medicare.

I'm having a lot of shortness of breath, some balance issues, drastic increase in fatigue, swollen painful lymph nodes, burning eyes, pain behind my right eye, sensitivity to light at times. swelling in my left foot,  the regular 24/7 Tinnitus, and more. I've become 70% housebound.

If my kitty didn't need such close monitoring right now and if my van didn't need safety work such as brakes and tires, I'd be out trying a mold sabbatical. Everyone I know who has tried it has had significant improvement.