Wednesday, October 30, 2013

PFT Results

I'm absolutely exhausted due to multiple nights of insomnia. I'm also pushing myself in my attempts/commitment to emotional healing. The two are related I'm sure. I've been having nightmares and disturbing dreams for the past couple weeks.

I'm going to therapy as well as 12 Step meetings in an attempt to heal how broken the events of the past 6 years have left me.

There is a very strong LGBT recovering community where I live and its been great to meet people. It's also tricky trying to navigate in-person friendships while having this disease. I'm still trying to find the best way to tell people without sounding like a complete nut job or, eliciting the response "of course you're tired...you've been through a lot". No one has judged me though and for that I'm grateful.

The fact that I'm super skinny right now does give more credence when I say I have a chronic illness which limits the amount of activity I can do. I only tell people I have a chronic illness when I've been invited multiple times to events that I've either had to cancel or I simply do not have the energy for, or if the circumstances/environment might mean passing out (i.e. toxic mold, or crowded hot rooms).

The people that accept that and still continue to call or invite me places are the people I'll ending up being friends with. It's tricky and doesn't help that I'm not the most socially graceful person. I'm told my awkwardness and mild eccentricities are endearing. I don't quite see them that way yet but maybe with time...

I'm continuing to lose weight which is puzzling but other than trying to boost my calories I'm not going to worry about it. I've spoken with enough people with M.E. to know this can be part of the disease.

There's an issue I haven't wanted to deal with because it feels like going down another rabbit hole that I don't quite have the energy to tackle right now. But I need to because its a quality of life issue and because I need to rule out cancer given my family history, low NK cells, a poorly functioning immune system, and high Nagalase levels.

I got the results back from the Pulmonary Function Test. Another unexpected twist in this journey. Luckily I'd saved the results of the previous PFT that I'd had back in 2009 so they had a little bit of a baseline to go on.

My lung's looked okay. However, they want me to see an Ear, Nose, and Throat specialist for more testing to see what's happening with my throat.

I had no idea a pulmonary function test had anything to do with the throat so I did a quick google search and it can yield abnormalities in that area of the body.

Now I understand why the woman (technician) looked so sad and concerned when I left the testing that day.  With the weight loss (I look very, very skinny now), the fatigue, and the results she probably worried about throat cancer.  I would if I were in her shoes. It doesn't help matters much that I smoked over a pack a day of cigarettes for about 15 years or that I used to drink a lot of alcohol both risk factors for throat cancer.

The range of possibilities are varied and can include vocal chord dysfunction, autonomic nerve dysfunction, MCS, as well as more grave ones.
Disorders of laryngeal function may arise as a result of anatomical or neurological abnormalities due to a number of causes. Chronic or slowly progressive airflow obstruction at the level of the larynx may be due to vocal fold polyps or granulomas and tumours, particularly invasive malignancies such as squamous cell carcinomas, lymphomas or thyroid carcinomas. Other aetiologies include papilloma formation leading to internal narrowing in the larynx and trachea and subglottic stenosis or benign thyroid tumours causing extrinsic compression. A significant number of chronic diseases can have laryngeal manifestations including rheumatoid arthritis, lupus, progressive systemic sclerosis, Wegener's granulomatosis and relapsing polychondritis.
It explains a lot though. It explains why my throat closed up in that apartment in El Cerrito and why I'm getting hoarse at times, as well as the shortness of breath.

The increase in sore throats, and swollen lymph nodes all up and down both sides of my neck, under my chin, back and front of neck I dismissed due to an M.E. flare up or tooth issues.

It's also more validation to the fact that I'm not crazy or imagining things or exaggerating. At times I think back to my Kaiser doctor who said to me "whenever I see your name on my appointment book I know there's something wrong". Or the neurologist here who said "you are a credible person plus I know people who suffer from M.E. and know how devastating it is" and "I bet you have a really high pain threshold". To that my response was "I used to think it was a good thing but now I don't". He agreed. 

The problem with having a high pain or discomfort threshold is by the time I show up in a doctor's office things are beyond the mild level (if its a progressive issue). 

I need to see an ENT. I found someone who accepts Medicare. I just need to make the phone call. I'm just a bit too tired to right now. 

Friday, October 25, 2013

Canary in a Coalmine-Help Launch this Campaign!


From Phoenix Rising:

Filmmaker Jennifer Brea launches the Kickstarter campaign today with the trailer of her forthcoming documentary Canary in a Coal Mine – a film that will help change the face of ME. Interview and article by Russell Fleming (Firestormm).
Jen after a day of shooting Canary
Jen after a day of filming.
“I will never do a full day of shooting again.”
© Canary in a Coal Mine


From the Kickstarter website:

A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of.
SYNOPSIS (from the website)
Canary in a Coal Mine follows the lives of several remarkable people living with a Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome"), a mysterious and devastating disease.They are forced to leave careers they loved, abandon the dream of having children, or face the prospect of being locked away forever in their homes and bedrooms. Worse still, most doctors, and sometimes those closest to them, don't even believe they're really ill.
And yet, surprising things can sometimes grow from these dark places. How would you begin to nourish your body if every food you ate, every object you touched had the capacity to cripple or heal you? How would you fill your life, and what would you toss aside, if you only had three hours a day to live it? What worlds would unfold before your eyes if everything you knew suddenly came to a grinding halt?Canary in a Coal Mine is about the human consequences of a medical system that is ill-equipped to treat an illness that challenges its every assumption, the danger of ignorance, and the power of a name. It’s the story of a community of millions that to most of the world is invisible.

For more, read our Film FAQ or visit our Press Kit page.


How you can help: (from the Kickstarter Campaign website)

First, give and give generously, whatever that means for you. Every dollar counts.
Second, spread the word! Crowdfunding campaigns reach and exceed their goals when very large amounts of people donate small amounts of money. So click on this link and share our page on Twitter and Facebook. Email your friends and family.
Then, follow us on Twitter, like us on Facebook. Stay up to date with the latest on the campaign.
If you are interested in making a tax-deductible donation or investing in the project in a deeper way, email jen@canaryinacoalminefilm.com. We'd love to have a conversation. 

Thursday, October 24, 2013

Treatment Update

Because of an increase in symptoms along with a decrease in functioning I needed a short phone appointment with my M.E. doctor to go over some test results.

The lung functioning tests were not sent to my doctor for some reason but he said hospitals can sometimes fail to follow through.

Anyway, I had a urine amino acid profile done. My doctor ordered it to check for malabsorption. He said its a test Medicare will pay for. The results showed that my body isn't absorbing much of anything.

Between that and the slowed gut motility my digestive system is a complete mess.

It could also explain the weight loss.

I'll try a low dose of Reglan in the hopes of speeding up my gut motility. When I eat normally I am so bloated that its become painful and I can't eat much for the next two days. I'm hoping it will work. The only caveat is it can cause tardive dyskenesia. Since I'm allergic to Compazine (and both meds are chemically related) I'm a little nervous about taking it but need to do something. I couldn't tolerate the Domperidone which is also used to treat gastroparesis.

I need to find a better protein source. If I could I'd eat grass fed meat but I can't stand the taste of meat and I don't like poultry or seafood. Not a good thing to have with this illness (picky eating).

The Nagalase test came back very, very high meaning my immune system isn't communicating very well. It's also a protein made by cancer and causes immunodeficiency. It can also be a result of a chronic viral infection.

My doctor would like me to go back on Valcyte for awhile but because of how bad I had gastritis when I took it in 2009, its contraindicated.

My immune system is also a complete mess. It doesn't matter what test I do now. They all come back abnormal. There goes my idea to get off antivirals in the hopes of saving money.

Nagalase interferes with the production of a chemical called gcMAF which can be treated with gc found in colostrum milk. I may try a very low dose of gcMAF (very low dose) except I can't afford it at this point. BetterHealthGuy has an excellent summary of gcMAF. My nagalase result was higher than his (at 3.2). He writes of his Nagalase test result:

The practitioner I worked with suggested that 2.9 was in the range of someone with HIV or cancer in terms of the impact on the immune system...
It has been suggested that ongoing antimicrobial therapy without a working immune system is like leaving the house with the door wide open inviting burglars in. By using GcMAF to activate macrophages, nagalase drops, and one may regain a functional immune system. The door is then closed to further invaders and we may no longer serve as a microbe hotel. Maintenance therapy should not be needed once the immune system is once again properly functioning. - See more at: http://www.betterhealthguy.com/gcmaf#sthash.qIAJ13fs.dpuf 

One odd test result is that my estrogen and estodial came back very, very high. He said he hasn't seen levels that high before. Who knows what that's about. The good news is my ovaries are working.

We're going to treat for parasites to see if that will help the weight loss and malabsorption.  I'll try the herbs Macuna and Arteminisin.

My sinuses have been feeling inflamed a likely consequence of my last mold exposure in the apartment. Because I have a genotype where my body can't effectively eliminate toxins/infections (whether mold/chemicals. virus/bacteria die off) we're going to try amphotericin nasal spray.

I'm also going to trial Na EDTA (Wayne's protocol).

He thinks the shortness of breath might be babesia related. Because I can't afford Mepron we might try something more affordable.

Basically I've started going downhill in many ways so we're trying to stop the slide into going into the bedbound territory.

Because I have had M.E so severely in the past I'm constantly at risk of going back there again if I don't do any treatments. It sucks because I can't afford treatments. I can't even afford to pay for the meds on I'm now.

The other thing that has had me in a panic is I need a root canal. My tooth hurt so bad last night after drinking something cold. It wasn't brief pain but lingered on for quite awhile. That and the toothache I've been nursing for awhile now means root canal. The lymph nodes on that side of my mouth are all swollen and I've started running a low grade fever. The earliest appointment I could get was for Monday.

I called around to price how much it costs since I don't have dental insurance. The average price is between $1200-1350 not including a crown. Crap!

None of the endodontists will accept monthly payments (believe me I called everyone that was within my 4 mile driving radius). One place said they accept Care Credit so I applied for that. It's at a 25% interest rate. For the next 24 months my food budget will be $200. Damnit.

I also got online and looked for low cost dental clinics but most have closed due to budget cuts. One place serves HIV clients but I left a message anyway.  I looked for places that would help pay for dental costs. I was happy to find a place. But when I called there was just a message stating because the wait list is over a year long they aren't even accepting applications for help anymore.

I canceled a meeting at 12 because I spent the entire morning and afternoon researching dentists. I did make it to therapy. The therapist mentioned that three cancellations means I could get kicked out of treatment.  Really? I was shocked. I've only had to cancel twice both times because I was so crashed that driving would not be safe. Does anyone even understand what its like to try to have a life with this illness?

Why in the hell does the budget always need to be balanced on the backs of the poor, disabled, and elderly-the very people who need the help the most but are so exhausted struggling to get by that we don't have a strong voice like the wealthy do.

Things really can't get any worse financially. There goes trying to get my friggin brakes fixed.

And no I did not spend my savings frivously. If I did I'd have a new tv a new ipad, new clothes, a warm coat for winter, a new Macbook pro, and more.

But I don't. I spent the money on medical needs, vets, and an apartment that costs twice a much as I could afford. Everything went for out of pocket medical costs and nothing was used for anything my doctor didn't recommend.

I have to make money. I just have to. I'm going to go forward with my idea. I don't know if it will work but I have to try something. I feel like a sinking ship in many ways. Like the boat is filling more rapidly with water and I'm getting too weak to bail it out as fast as I used to.

I am growing Kale and Beets. The plants are coming along nicely. The only issue is the chickens like Kale so its quite wholy (wholly? holy? holey?). Hopefully they'll leave some for me.

Thursday, October 17, 2013

This and That

I'm puzzled as to what is happening in my body. I went in Tuesday morning for the lung functioning tests. The people at the hospital were so kind. The respiratory therapist grew up in the same area I did, although we didn't settle in the area until I was in 4th grade due to my Dad being in the Air Force. It was fun to talk about how things were back then and nice to meet someone from the same area.  

I was only a little nervous until she weighed me. My weight has dropped to 114 pounds (I'm 5'8 1/2). And that's fully clothed with shoes on. Once I saw my weight had dropped again my anxiety increased.

The only thing I can think of is that I'd eliminated Ensure and Boost drinks due to cost. I was drinking 2-3 per day so as to increase my caloric intake in the hopes I would put on weight.  I've lost so much muscle and can't seem to get it back. I'm basically skin and bones at this point. I can't afford to lose anymore weight. I went to the store after the test and bought some Ensure. It's $11.88 for six bottles.

The test itself wasn't bad. She said that the diffusion capacity looked good but I had to wonder about her silence regarding the other test. She had me repeat that part 7 times. I know the test is supposed to be repeated a minimum of 3 times but forget why.

When I left I looked back at her to say goodbye. The expression on her face caught me off guard. It was a mixture of sadness and concern. I don't know if it was because of my circumstances or whether she could sense how alone and sad I feel or what but it had me wondering a little about whether one part of the lung function test was abnormal.

Yesterday I woke up feeling that tightness in my chest again but also had a mild case of vertigo. I went to sit down and couldn't figure out spatially where I was so I started to fall forward but caught myself. At one point I felt faint and nauseated so I laid down for awhile.

The shortness of breath this morning was a bit worse. Coughing made it worse for reasons I don't understand. I can feel the congestion or inflammation or whatever it is. After I'd cough I'd have a tiny bit of difficulty breathing and would feel anxious and wished I had an inhaler. Is this allergies, asthma or what?  I really hope its not COPD or Pulmonary Fibrosis.

I've also been nursing a toothache for awhile. I'd been gargling with warm salt water and then colloidal silver but it hasn't helped. It hurts to bite down on part of the tooth. I do not have dental insurance. I tried researching dental plans last night but was too exhausted to concentrate for long. I have no idea if its worth it to purchase it or not. Some have lengthy wait periods.

I'm having that crushing exhaustion and had to cancel therapy as well as social plans again. I cried. This stupid illness keeps getting in the way of my attempts to develop local friends.

Last night I was panicking about money. A root canal plus crown can cost as much as $1800 or more. I don't know how much the lung functioning testing will cost me. I kept having to calm myself down and tried to tell myself that somehow this will all work out.

The brakes on my car need replacing. The brake light keeps coming on.  I live too far from a bus stop to walk plus its not in a safe area.

There are so many people who are in the same financial predicament as I am. Many are worse off. I'm extremely grateful for what I do have but its definitely not the life I had planned. I'm going to make the best out of my life regardless. I just wish it were easier. I wish this illness was recognized. If it were I'd be able to go to a local doctor and actually get help instead of being brushed off.

I'm sure this is all related to M.E.  At least I hope it is.

It has taken me quite awhile to adjust to my financial situation. I don't know the tricks to save money yet but I'm trying to learn. If I could I'd go to the dental school in San Francisco but SF is more than 4 miles away.

While things are a bit tough at the moment I know this too shall pass. What I need is some way to bring in money. I have an idea which involves building a website. One challenging thing for me is to ask for help. I've gotten better at it but its still tough.

I am enjoying Autumn here though. The temperature has been perfect. Just warm enough but not too warm. I fell asleep in the sun yesterday.


Friday, October 11, 2013

Lungs!

Every now and then I'll think about which organ hasn't been affected by this illness. The only organ that hasn't been affect are/were my lungs.

When first ill I had air hunger. Because I'd been staying up in Guerneville during the week while doing my post-doc at Kaiser, and had an unusual bug bite, my M.E. doctor at the time treated me for lyme and Babesia. The air hunger went away after a long course of Mepron.

In 2004-2005 I had a series of illnesses including pneumonia, bronchitis twice, strep throat, and the stomach flu. Kaiser took chest x-rays which showed pneumonia and then took another set of chest x-rays 6 months later when I had another bout with bronchitis.

At the time I was working 3/4 time at an outpatient crises clinic doing psychiatric evaluations (and writing my dissertation) to determine appropriate level of care. It was in a small building with water leaks. We had to put buckets around for the water to drip into. Everyone who worked there was getting sick with bronchitis and lung infections. Because the company wouldn't do a thing about it one of the staff made an anonymous call to OSHA who came out for an inspection and ended up fining the company for inadequate ventilation among other things. Clearly there was a mold issue.

In December 2005 I received a letter from my doctor stating I had COPD. I was alarmed, did research and ended up calling an organization to ask some questions. The woman who I spoke to was quite helpful and informative. She told me based on what I was telling her that I could expect to start having symptoms in about 8-10 years.

I've had bouts of waking up feeling congested in my chest (I'm prone to lung infections and bronchitis) but this week the symptoms increased. I brushed it off until yesterday when I was clearly having difficulty breathing. I could feel a rattle in what felt like the lower lobes of my lungs. There was a sensation of having congestion but I couldn't bring it up. I was coughing a lot but couldn't get a good breath of air. I started feeling light headed and was quite fatigued, much more so than normal. I couldn't help but notice that I was at the 8 year mark so my mind went back to the conversation I'd had 8 years prior.

I decided to email my M.E. doctor before contacting a local doctor. I told him I'd been diagnosed with COPD and that one spirometry test was normal in 2006 but the second one in 2009 showed mild abnormalities that the technician brushed off (which was fine with me).

One thing I like about having an M.E. doctor is that he can differentiate between what are normal M.E. symptoms vs what needs further investigation. He decided this required further investigation and wrote an order for testing including the following:

     Pulmonary Function Test Before and After with Bronchodilator

     CO2 Diffusion Capacity

He said to take it to the local hospital to get the tests done. I called the hospital's pulmonary testing unit after 5 on Thursday and left a message similar to the one I left for my M.E. doctor. They called back first thing this morning. The woman said that my doctor would need to send a referral. I explained he was a couple hours away and that he'd written an order. She said that it sounded like I needed to be seen the earlier the better so she asked for my doctor's phone number. After speaking to my doctor's assistant she left me a message stating they are going to "expedite this".

The troubling thing about my this symptom is that its worse upon waking then I spend the next couple hours coughing before it finally eases up. I'm also getting hoarse at times but I think its from being exhausted after a busy week socializing.

I've also been having chest pain and heart palpitations. The heart palps have been so frequent and persistent this week that its exhausting. I'm not sure why.

I would skip this testing because of money but given there's a chance it could be COPD getting it diagnosed and then starting treatment is important so as to slow down the progression. COPD is the third leading cause of death in the US and can develop as a result of smoking or pollutants.

The pulmonary doctor that I saw in 2009 said I was too young to be diagnosed with COPD. I agreed.

I'm a bit concerned but am also so exhausted I don't have the energy to worry.

I looked up "air hunger" in Erica Verillos excellent book on M.E. It can be common with M.E. but the pattern described is different than what I'm experiencing.

It's probably nothing but just in case...

Will post when results are in.  




Wednesday, October 9, 2013

Update

I've had a busy few days. Quite busy in fact. I'm trying to get involved in the local LGBT community and have been going to a couple support groups as well. I don't want to feel the way I did Saturday ever again so I'm trying to ease the sense of isolation. I miss the LGBT community a lot. I used to be quite involved in the SF and East Bay communities.

I started Imunovir after a kind, generous person sent some in the mail thankfully. There's no way I could afford that expense right now. It's working though! After being on it for about 10 days I can report definite improvement. This is a keeper so I'll order some from a Canadian pharmacy in January. It's about $120 a month.

I also started a low dose of liquid Doxepin Sunday night and was able to sleep the entire night for the first time in over a week. I'm hoping it will also increase my appetite. Based on past experience I know the Doxepin will stop working but I have Trazodone and will take that. The only problem with Trazodone is I feel depressed the next day. But sleep is critical. Especially right now.

I'm almost up to the full dose of Prazosin. It has helped me with the early morning (3-5 a.m.) awakening that I dislike so much. Because it increases my heart rate I'm also taking Ivabradine twice a day. It's taking awhile to find the correct dosage. My goal is to get my heart rate down to 90 consistantly. It tends to hover around 100 beats per minute which isn't good for the heart.

This government shut down/debt ceiling stalemate is infuriating. I can't watch the news because I get so frustrated. If Congress doesn't agree on the debt ceiling by October 17 they'll stop sending out social security checks and stop Medicare payments. I'd like for all the Tea Partiers to get serious case of M.E. I'd be more than happy to donate my blood to them.

Medication Issue-I dont' remember if I updated or not. Medicare Part D covers up to $2700 per year. After than you fall into the coverage gap where the next $4000 comes out of your own pocket.

I called the company I signed up with and found out I have less than $800 left for the remainder of the year. I was hoping I was wrong about how much I had left to spend. In the next week I'll make decisions about which meds to keep and which to stop until January. It's a little scary.

My brain has been absolutely nonfunctional at times. Monday morning I was trying to redo my budget. I couldn't figure out how to use the calculator. I couldn't figure out how to multiply. I finally got it but it was a little unnerving to have it happen. It's never happened to me before.

Last night I met someone for dinner. While driving to the restaurant I got turned around and lost. I became flustered because I hate being late. My brain stopped working. I didn't realize I had stopped right in the middle of an intersection until I heard the car horns honking. At first I couldn't figure out why then realized. Oops!

Yesterday late morning a woman was giving me her phone number. I was trying to add her into my contacts on my Iphone but could not figure out how. I just looked at it and couldn't figure it out for the life of me so I had her write it on a piece of paper. I was a little embarrassed but joked it off.

Because of the kindness of people in the M.E. community as well as my sister I was able to fill up the gas tank on my car. And, I don't have to worry about not having to buy food the last week to 10 days of the month. Not only that but I was able to pay off the rest of the dental bill and paid a little extra to the colon surgeon.

Each month I run out of money about 7-10 days before the next SSDI check so I stopped buying Ensure and Boost as a way to take in extra calories. That will help a little.

Somebody sent me a care package and a card. I've never met this person but she too suffers from M.E. What she wrote on the card and what she sent me were perfect. Here was someone I'd never met but who picked the most perfect things (she had contacted me at the email address on this blog) and wrote a wonderful card. It moved me to tears.

She also gave me hope. She is now in a relationship with someone who can see past her M.E.

I still feel a little shaky emotionally but am getting good support. My goal is to get through Winter. My housemate said it gets really gray and foggy here during that time. Fog and rain don't mix well with me so I'm setting up plans to get through it. I'm hoping to take a couple trips here and there to get a break from the grayness. If I can tolerate it I'd love to take Amtrak and go see my Dad. I'd also love to go to the Palm Springs area to see how it feels. He's still retaining fluid even though he's on diuretics. He sees the nephrologist Friday to get more test results.




Sunday, October 6, 2013

Whew!

Hardly slept again last night making it the sixth? Fifth? night of very little sleep. My nervous system is so amped I can't calm it down. It was a very, very difficult dark night. But-I made it. I discovered some things. One of them is how so very difficult it is for me to reach out and ask for help.

For some reason its easier to talk about some of the harder things on this blog than it is in "person". I reached a point last night where if I didn't ask for help the ending wouldn't be good. So I did. I stepped out of my comfort zone and asked some people for help in the middle of the night. It felt frightening to be that vulnerable but so important.

I'm not feeling in any way articulate. I know it will take some time to heal from this and it will be bumpy. But I feel that old sense of determination kicking in. I'm not letting this illness win. It's like the worst has happened and last night I got to experience the whole range of feelings about all that has occurred these past few years. When morning arrived and I could hear the birds start to chirp I thought to myself "I survived. I did it."  I was present for a whole range of difficult feelings and I'm here, still.

Now that my entire life has been torn down and ripped apart by this illness and the fallout that ensued after getting sick, its time to rebuild bringing forward parts of myself I want to keep and letting "die" the parts of me that no longer work.

I love music and this song by Tori Amos speaks to me today...it's called Gold Dust. Sort of a different way of saying what I was trying to express in my other blog yesterday.


Wednesday, October 2, 2013

Update

I had a total of 2.5 hours of sleep last night. I couldn't fall asleep until at least 12:30 and then woke up again at 3. Luckily I know never to listen to the committee in my head in the middle of the night.

I've received a lot of emails expressing concern so I wanted to write a quick update. I'd like to say I'm feeling great and optimistic but I'm still in a struggle although I'm doing a little better today.

I'm a fighter, resourceful, and determined. Those qualities existed before I got sick and are still there.

I  want to thank a group of people on facebook. I've been part of a small closed fb group of women for the past few years. They have circled around me and I am resting in their support, wisdom, and comfort. They don't pathologize me but they get it. I think everyone in the 25% group of M.E. gets it.

I can't begin to express the depth of gratitude I have for these women. Last night from 3 a.m. onward I read and reread their comments to me (and emails) over and over for comfort. I don't know what I would have done had they not stepped up.

The simple act of hearing someone else say "I've been there and I made it through, somehow" has been helpful. One person who I need to thank privately wrote a great list of things to consider before I took any action. Some got my attention.

Hearing people say "I've been there" and "we want you to talk about it and are here for you" AND that they actually care for me has been helpful.

If anyone is at a loss as to what to say when someone is in a dangerous place take notice (I understand, I want to hear your pain, and I care).  

One person brought up the fact that birthdays, anniversaries, and the like can trigger things. I want my birthday to be over with.  I've been looking at deals to just get out of town for a night or two. Not that I can afford it but the alternative isn't appealing.

But most of all, I do not want pity/obligatory visits on my birthday. I'd rather be alone.

I would have blogged yesterday but I couldn't because things got worse. I have Medicare Part D which is government sponsored drug plan (for lack of better words).

I'm on a lot of medications and need to be on all of them so I don't return to being bedbound. Believe me I've tried reducing, stopping antivirals and antibiotics but start going backwards.

One of my biggest fears has been reaching what's called the coverage gap.

Each month the plan that you signed up for provides a statement letting one know which stage you are in. I think Medicare pays for meds (except for copays) up until about $1700 (best guess). There are 3 stages: Initial coverage which pays up to about $1700 worth of medications (I think).

Once I reach that stage I go into what's called the coverage gap which means that no medications are covered. Everything becomes out of pocket for the next $4000 (I officially do not like republicans-sorry if that offends anyone but they are the reason Medicare keeps getting cut, the fuckers).

I received my statement Monday evening. I've used up over $1100 as of August 31. I will hit the coverage gap this month meaning I'll have to pay for all of my meds out of pocket which is impossible for me.

So I'm starting the process of choosing what meds I most desperately need and will only pay for those.

Yesterday was an intense day as I sat with this new information. Crap. How the hell do  I decide which meds to stop until January?

When I look at my list its the expensive ones I need. Lamictal is the most expensive but its also the only antidepressant I can tolerate at this point (it's used off label for treatment resistant depression). Stopping that would not be a good thing. Valtrex and Famvir are the next most expensive. I've tried many times to stop them and its non negotiable. I've said many times that becoming bedbound again is my line in the sand.  I will not do it.

Flexeril I need for muscle spasms and there are withdrawals when stopping. Can't stop Clonazepam because of dangerous withdrawals.

The antibiotics will have to go but that's the only thing I can cut out. I need the blood pressure medication but I think that will need to go also.

What makes me most nervous is that this is going to take place during my normally most worst months physically (and emotionally).

I can get one more month of Valtrex and maybe a month with Famvir and then its done so I'm having my freakout.

My back is in bad shape. I've also been having leg weakness in both legs that I thought was toxin related but its not so I emailed the neurosurgeon letting him know what's going on.  The reason I know its not toxin related is because I notice the weakness every time I bend over to pick something up.

I ran out of Advil yesterday but was unable to go to the store to get more. Today I was able to but it flared up the pain.

I'll write an email to my M.E. doctor tomorrow asking about any alternatives.

My mind hasn't been in the greatest shape and I lost the key to the mailbox. I'll probably get the silent treatment for awhile but that's the least of my problems right now.

Basically I'm fighting with everything I have left.  And I have support. And I have therapy tomorrow if my back will let me.

Thank you to everyone for your thoughts and prayers.  Pardon grammatical errors and typos.