Tuesday, August 19, 2014

Battles

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.