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.


deadmendontsnore said...

I remember well my own nightmare living in a shared house with severe ME. I really hope you can find something more suitable or at least convince your housemates to stop using the air fresheners and such like that are adding to your symptoms. Unfortunatley it is so hard for a healthy person to understand just how big a problem something as seemingly insignificant as a plug-in airfreshener or a fragranced laundry powder can be to the health of someone with ME.

Anonymous said...

I am so sorry you are not receiving the support you need from your housemate. I have been shocked by the attitude that some have of a right to smell as they please via offending chemicals. In the workplace it is insensitive at best, in your own home, that sort of attitude is cruel. I hope you find resolution. <3