Sunday, December 29, 2013

Not doing so well...

I don't like admitting I'm not doing very well.  Somehow I like to maintain the illusion that I've escaped the clutches of this disease-that I've escaped how severely ill I can become.

I first noticed some trouble when speaking at a meeting over a week ago. I realized I wasn't making a ton of sense. You know-when you leave out crucial parts of sentences?

I've been shaky ever since a week ago Thursday so I spent Friday, Saturday, and Sunday mostly in bed but able to get up and make meals, hang out with the chickens and all.

I went out Monday for awhile. Tuesday spent in bed. Went to people's houses for Christmas against my better judgment. I was hungry for social contact though.

The only time I've been able to leave the house since Christmas was to go pick up my prescriptions and do some minor grocery shopping. I was so worn out from it though. Quite a contrast as to how things have been for me for the past 2 years.  

Yesterday I took a supplement called "Total Cleanse-Lymph" by Solaray. I thought maybe it would help the muscle/joint pain I'd been experiencing.  I only took 3/4 of one pill even though the recommended dose was 2.

Two hours later I had severe OI. I was on an important phone call when 50 minutes into it I was hit with feeling faint (even while lying down). I spent the next few hours feeling faint off and on. The kind of severe OI where even going to the bathroom is scary because I wasn't sure if I was going to pass out on my way there.

Nausea, light sensitivity, really bad MCS followed. While drinking water I could smell the dish soap I used and would feel immediately nauseous. Or filling up my cat's bowl with water I could smell the chlorine in it and feel nauseated by it.

Today I have noise sensitivity and a lot of muscle pain as well as connective tissue pain and that pure exhaustion.  The world feels like its going to tilt a bit at times.

It feels scary because I don't have anyone to help. Interestingly none of my new found "friends" (yeah right) have bothered to call or anything even though I've put out the word I'm not in good shape.  Many of my M.E. friends have given up on trying to be friends with healthy people. I can see why.

It's a bitter pill to swallow to be in this kind of shape again.

I'm drinking lots of water and will take charcoal to try to clean up my system.

I guess 2013 will be going out with a bang. I hope this will ease up. I'd rather not spend New Year's Eve alone again. But if I have to at least I have my old, used Roku so I can watch Netflix. I'm currently addicted to "House of Cards". It's excellent.  I'm really grateful I spent the $20 to buy it.  I also decided to pay $7.99 per month for Netflix-something else I'm grateful for.  

Sunday, December 15, 2013

The Best and the Brightest...

I've been wanting to do this post for awhile especially because its around the Holidays. Because I'm flat on my back with a herx and muscle/joint/tendon pain I've become aware that its the 15th-ten days before x-mas!  I've commented before that since getting sick I have a different perspective on time.

It has been said that this disease takes the best and brightest out of the circle of life. As I've gotten to know people in the M.E. world I have to agree. I can name names but I feel that if I do I'm "outing" people. Some don't want their name associated with this disease (why do we call it an illness when this is a progressive disease but that's a topic for another post). Given the stigma attached and the consequences thereof (psychiatric hospitalizations especially in the UK) I don't blame them. We all know that Laura Hillenbrand was stricken down by this disease. How she managed to write two books with severe vertigo is amazing and inspiring.

Anyway, over the past several years I've gotten to know and become friends with two people who also have this disease. They've become two of my favorite people. Without going into details both of them helped me out when I was in a very dark, dark place that I didn't think I'd make it out. Cusp in particular reached out her hand and got others to do the same. I don't know how to thank them except to post about their work, how much I admire them, think they are funny, and how creative and talented they both are.

If ever two people are deserving to be supported these two people are. I don't know how much detail to go into about their lives except to say they are very, very ill. In spite of that they give back to the community in spades.

In the day to day survival of the onslaught of symptoms and how all encompassing they can be its easy to forget or even not know what someone's previous life was like....

They have created a music album that is simply excellent! Below are links to where to find info as well as where to purchase the album (or song/s). I really want to support these two people. If you are looking for a gift for the Holidays/New Year's/Valentine's Day or anything buy this. It's a great way to not only buy great music but also to give back.....

Here's info about their band Dropkick (both have an extensive history in the music world and are from the UK and Australia):


Surprises and Mysteries

Yesterday a package from amazon showed up at my door. I was surprised to see that it was addressed to me. In it were lots of socks!  Because there was no package insert label thing I have no idea who it was from or who to thank!

Later that afternoon I went to check the mail and found another package had arrived. I'd just spent $64 on supplements (Cytozyme AD and Actifolate) so I assumed it was that except it was from a different company. When I opened the package I was surprised to find it contained Mimosa Pudica from Biopure. I have no idea who sent that either. The billing address was True Sun LLC which I don't recognize.

A number of people have my address (including several countries) but I have no idea who they were from. I don't want to send off thank you's and in the process make someone feel bad if they didn't send it yet I don't want to appear ungrateful by not sending a thank you so I thought I'd post in case whomever sent it reads this.

My doctor's office was looking for a source of Mimosa Pudica because Hopkinton Pharmacy has been out of it for months. They sent me free samples before so I'm wondering if it was them. My doctor wants me on this for the next six months.

A big THANK YOU to whomever sent these things! I appreciate both very, very much!

The company for Mimosa Pudica is different than what I used before-it's from Biopure. I took 1/4 teaspoon as recommended on the label and woke up with severe pain in my muscles, joints, back. I have no idea if its herx related or if the pain is completely unrelated.

I'm going to email my doctor tomorrow to find out what it might be. Mimosa Pudica has a wide range of things it targets  (including antiviral, antifungal-mold, etc) so it could be one of several things. I did sleep better last night.

This brand is the brand that the Better Health Guy uses so I know it's a quality brand.

I'm starting to have my usual herx symptoms so I think this is mostly a herx. The pain might simply be part of M.E. I'll not take the second dose tonight to slow things down. My doctor has been firm in maintaining its not good to push through a herx especially given how sick I was from this disease.

Saturday, December 14, 2013

Navigating the Social World

The good news is I increased the Imunovir and found 8 capsules of Mimosa Pudica that I started taking a couple days ago. My doctor suggested, after reading my email about the lengthy virus not letting up, to resume Mimosa Pudica. I'm glad I had some left because with the increase in Imunovir and Mimosa Pudica its knocked the virus out and I have more energy.

It's a strange position to be in. To be well enough to want to socialize but not well enough to maintain it. I've talked before about how tricky it is telling people and what to tell them. It's not something I even want to talk about but it becomes necessary at two junctures: 1) when someone asks me what I do for a living and 2) when I have to cancel or turn down invitations to do things.

If I tell people I have Myalgic Encephalomyelitis people respect that. It sounds like a real disease but if I tell them I have Chronic Fatigue Syndrome there's that pregnant pause and then the flat response "oh". "Oh" meaning that disease that's all in your head or that fake illness.  "Oh" meaning your weak, a hypochondriac.

Mostly I tell them I have issues with my immune system and have reduced energy as a result.

But last night I went to a meeting in a new building and had some sort of reaction. As I sat there I suddenly felt like I was going to pass out. I had to start jiggling my legs, shift, then started to put my head between my legs. Eventually I stood up and left the room for awhile. I haven't had that happen in quite some time.

I ended up going to dinner afterwards with 5 other people. They all ordered a meal. I had water. No one said anything. I felt a bit awkward. I still don't know how to explain the money thing. I was hungry and the food they ordered smelled great. I tried playing it off. Someone said "have a couple french fries". I needed to get something in my stomach so I had a couple being careful not to appear overly eager or overly hungry.

I became the invisible person. Everyone there knew I had some sort of chronic illness. I didn't have the energy to keep up the pace of the conversation like I would have had I'd been healthy. I felt more and more uncomfortable as I sat there. They were all going to a Holiday part the next night and talked about who was riding with home. No invitation came my way. I understand why but it hurt a bit nonetheless.

When the conversation turned to gossiping about other people who were "different" I knew the moment I left it the gossip be about me (surprisingly I didn't really care). After I all, I was quiet during the meal, I didn't order food-all I had was water, I have a chronic illness that I can't explain very well. I was different. I also didn't want to participate in the gossip. I've been on the other end of it and its painful.

I politely excused myself and left. As I walked to my car I felt the old familiar worry. Would I start to feel woozy driving? Would I feel like passing out at stoplights again?

I dreaded going home to an isolated bedroom but I needed to lay down. The drive ended up being fine thankfully.

I felt very sad and sick to my stomach with a sense of aloneness as I drove. Am I ever going to make real friends who accept me as I am?  I think they are out there. I just have to hang in there and find my way. It takes energy though. I hope my illness remains stable enough to allow me to make true friends.

I don't take what happened personally so much but more as a commentary on our culture as well as this particular group. They are not my people.

Thursday, December 5, 2013

SSDI and Money

I've been in the process of comparing Medicare Part D (drug) plans over the past few weeks. Because the deadline is almost here (December 7th), the website is quite slow so I thought I'd do a post.

I want to preface this by saying I'm extremely grateful for SSDI and Medicare and I'm also very glad I applied for SSDI when I did or else I'd be in worse shape financially.  Even though what I'm about to describe is difficult I feel okay (mostly) about it. It's actually a hopeful post so keep  reading!

Physically I've been slowed down by a bout of muscle spasms in my back as well as some sort of virus. For anyone who hasn't experienced muscle spasms they are extremely painful! When they occur I can't move and can't help but cry out from pain. They have been occurring many, many times a day.

I saw a neurologist for my back the Weds before Thanksgiving who confirmed that it was muscle spasms. I couldn't even bend over so he could do a full exam of my back. When he felt it he was shocked by how "rigid as a rod" it was. He took me off Flexeril, put me on Baclofen, ordered physical therapy and asked me to bring in the scan of my MRI again. He was concerned that it is protecting further deterioration of my discs and progressing herniation. It turns out Baclofen can be good for M.E. also.

Back to the topic. I run out of money about 10-12 days prior to when I get my SSDI check on the 3rd. This month I had a couple unexpected expenses which put me further behind. My cat peed on my bed wrecking the mattress pad and I discovered my DVD player is broken (it had access to amazon prime). Because the Holidays are tough emotionally (and financially) I wanted to be able to watch Amazon prime for free shows so I bought a used, cheap, old Roku player that had Amazon prime. You can easily find one on craigslist for $20 or less.

This led me to being short much earlier and consequently not being able to replace the soap I'd run out of so I had to use shampoo (makes me so grateful for soap) for a few days. My nephews b-day was earlier this week and I couldn't even afford a card!

Tonight I was at a meeting. I wore the only shoes I can wear (Keen's sandals). I didn't have socks on. A friend noticed and commented that it was 37 degrees out (we are in an unusual cold spell) and that I needed to wear socks! Luckily the meeting was starting so I didn't have to tell her that I only had one pair of socks (which needed washing) and couldn't afford more right now (I do have white thick crew (?) socks but I can't wear them with Keen's).

Because my immune system is so poor (confirmed by testing done by the neurologist who said "you're immune system isn't working all that well") I've developed a raging fungal infection on both feet. The bottoms are symptomatic. My toe nails are so thin they break easy. Two fell off completely. Last night while closing the curtains I bumped into something with my big toe. The toenail bent in half. Oh my god that hurt. When I got upstairs half the nail was standing upright from the nailbed.

Because my back is so bad I had to figure out a way to cut the toenail off. I tried all sorts of positions finally finding one where I was barely able to reach the nail. But I cut it off and put neosporin and a band aid on it. I ended up having to take Advil and woke up in bad stomach pain because of the gastritis. I'm laughing as I type because its all so ridiculous!

I can't afford a podiatrist right now so I'm dealing with it the best I can. In January I'll email my M.E. doctor to see if he would be willing to prescribe an antifungal. I can't afford any more meds this year so it will have to wait.

Medical bills have piled up but I'm making payments as best I can. I had to take out Care credit for the endodontist.

This is the reality of living with a serious chronic illness and relying on SSDI and Medicare.

Am I enjoying my life?

YES! I am enjoying my small, limited life!

I'm grateful for the ability to socialize. It's nothing like what I did when I was healthy but just to be able to talk to someone face to face or get a hug is such a gift to me now.

There are some really tough days and life is hard but I am so grateful for the little things like soap. Or knowing I have little budget for food this month, feeling grateful for the tangerine tree out in the yard that I raided earlier.

Or sitting in a meeting with my stomach growling because I was so hungry. The woman next to me chuckled when she heard it. I did have a moment of trying to fight off tears. But she handed me a tangerine and I sat there so glad for her and the tangerine (which I ravished immediately).

I had to laugh awhile ago. I was at a thrift store close to where I live hoping they would have warm things in my size (they didn't). It's in a rough neighborhood and serves a rough crowd. Some are people like me who are simply poor for whatever reason but some...whew! Scary!

I used to shop at Macy's and Nordstroms. At Nordstrom's there would be nice, soothing piano music playing in the background.

While at the thrift store there is an overhead announcement that gets played over and over: "attention all shoppers. Please do not leave your child unattended at any time...". Lol!

Such a different life. One I never expected to be living.

But I wouldn't trade it for the world if it meant being bedbound again. I was rereading my blog last night. I was really, really sick like so many people are still (The Canary in the Coal Mine film's description is so apt "the most devastating disease that your doctor has never heard of"). The suffering that goes with that level of sickness is deep, immense.... and so profound that suicide seems like a good option...and then on top of that having to deal with the stigma and stupid things people say. I still can't listen to music from that time period because it brings it all back.

I have fought tooth and nail (no pun intended) to gain the limited functioning I do have.  I spend all my money on medications sold both in and out of this country (Ivabraden, Mimosa Pudica, etc..) but I'm able to get out most days a week now for about an hour or two (sometimes more and sometimes less and sometimes not at all).

I'm a survivor. I'm determined and I'm resilient no matter what the hell anyone else says or believes. I was told at one point that there was no more improvement to be had and to save my money for other things. Thank God I didn't listen to that. For a long time I felt like a failure because I kept being told to think positive but I was so filled with grief and fear (not to mention being so sick) that I couldn't. There were times when I wanted to shout back "don't you get it? The most positive thing I can do is stay alive today!"  I can't be around that type of attitude anymore. I am not a failure.

I am dealing with some other very difficult things that have nothing to do with M.E. If I listed them people would be shocked. But its further proof of my inner strength.

I may be poor financially. I have a car that needs work. Sometimes the hood won't shut all the way and I have to drive around like that. I get about 8-10 miles to the gallon. It needs A LOT of work, lol. But it gets me to where I'm going (knock on wood) and for that I'm grateful.

But I feel rich in spirit. I am moved to tears by beautiful sunsets. I feel deeply connected to nature. Even though its freezing cold I'm enjoying it. I love putting the chickens to bed each night and hearing there soft cooing as I bid them goodnight. The moonlight guiding my footsteps as I traverse through the leaves trying to avoid chicken and dog poop.  I'm meeting people. I find I care about each of them deeply even though I don't know them. My compassion and empathy run deep because of the suffering I've gone through (and continue to).

At night I dream of special places. The night before last I dreamt I was in Europe and loved it. It was time to go back home. I didn't want to. My mom made the plane reservations because I couldn't understand the flight plan. I love that she is so closely walking with me right now (I've had multiple dreams of her appearing and helping me).

So yes I love my small life. I love everything I have. I'm content. It's not without times of self-pity or wishing I had more or tears of grief for the life I could have led...or for the life I lost. But I'm alive and I'm finding ways to give back...small as they may be....and small as my life is....I'm incredibly grateful and very, very lucky. I have found the right help I need. I have a good therapist. I'm getting the right direction. I'm developing deep spiritual yes-dare I say it?  Will it tempt fate if I admit it?

Yes-life is good.