Wednesday, December 28, 2011

2011: The Year of Goodbyes

That's how this year has felt. One long goodbye to beloved pets, my partner, my house, the backyard, the birds and on and on. Actually the past 4 years have involved a multitude of goodbyes.

I don't think I can handle one more loss but one thing I've learned since getting ill is I have no control over it. I wish I could rewrite the past year. I would have done things differently had I know this would be the outcome.

I did not expect to spend both Christmas and New Year's Eve alone. It's no one's fault and I was invited to my sisters' best friend's house on Christmas day but I couldn't imagine being around people I don't know well. I have a hard time letting people see how deeply sad I am.

I spent Christmas Eve with my youngest sister, my brother-in-law, and his parents. Dinner was 5 star as it always is when my sister cooks. And it was fun hanging out with them. I was a bit preoccupied however, because of the bleeding.

Since the colonoscopy I'd had an increase in bleeding to every other day. It wasn't a small amount either. Christmas Eve I was pleased to drive myself to my sister's house but right before I left I started bleeding again. This was around 4:00. The bleeding continued slowly over the next few hours and started to get rather brisk about 4 hours later so I contacted my doctor's office to see what I should do. Clearly it was getting worse and I was worried. The on call doctor who'd probably had one too many glasses of wine giggled as he said "I hate to send you to the ER on Christmas Eve but you need to go". My sister drove me while I sat there and thought to myself "is all this shit ever going to end-?"

They got me right in and the doctor arrived within 15 minutes or so. Luckily he was able to locate the source of the bleeding. The scope has eroded part of my colon (a small part) by scraping it and it had left an open wound which needed treatment or it would continue to get worse.

My blood count was okay -they gave me a copy to show my doctor. HCT is at 15.8 with 15 being the lowest before getting flagged. The sodium and chloride were both low and my blood sugar was high again. The staff there were wonderful and kind. We were out within 2 hours.

But I can't eat solid foods for 1 week so I'm spending the rest of the year on a basically liquid diet along with yogurt and pudding. Knock on wood I haven't had another episode since the ER. Seems like a fitting end to the year.

I should contact my GI doctor but I'm not up for another MD appointment.

My other sister and her family gave me a Jack La Lane juicer which has certainly come in handy this week. I've been juicing everyday and have been enjoying trying out different combinations of fruits and veggies.

I started Prazosin two weeks ago Thursday night. It definitely helped curb waking up with that startled/racing feeling. I woke up feeling extra tired and coming down with something. A virus had been going around so I must have caught that. Friday night I had to sleep partly sitting up because the virus had moved to my chest and I was having a hard time breathing. I was up from 3-4 am. breathing in steam from a boiling pot of water.

Luckily it didn't get any worse. It had all the symptoms of a looming lung infection but that eased up thankfully.

What scared me though was Weds I woke up feeling woozy and faint. I'd taken a full dose of Prazosin the night before and this was one of the side effects listed. Against my better judgment I took Chelsea out for a tiny walk. I didn't make it far.

When I got back the muscles in the back of my legs were burning as if I'd just run a marathon even though I hadn't walked more than 1/4 a block. I got in bed and the muscle pain/ache/burning got really bad and then encompassed my entire body. I could not look at light because it hurt my eyes so bad. I couldn't watch TV nor get on the computer except to briefly send my ME doctor an email wondering if this was a side effect. Any movement increased the pain. I took 1/2 a vicoden hoping that would help but it didn't touch it. Any movement on my skin hurt also.

When I got up to take meds my legs were incredibly weak making the short trip to the kitchen a bit of a challenge. I wasn't able to take in much water because any movement caused pain.

It eased up by nighttime and the next day was gone. I did not take Prazosin that night. I still have no idea if this was a side effect or the result of a virus but I've never experienced overall body pain like that before nor the intense eye pain. I hope those sorts of symptoms aren't in my future.

I'm going to try Prazosin once more once this week is over and I can eat again. I would like to stay on it if possible. It was nice not to wake up with a racing sympathetic nervous system.

Also, it has helped to add in the extra adrenal support.

I don't know what 2012 holds for me. Usually when I've had a difficult year I'm hopeful the next year will be a good one but I've been saying that since I got sick. I don't know what I believe anymore. I'm just taking things one day at a time hoping I'll feel better soon or that at least some good things will happen.

Being able to afford a place to live where I can have Chelsea and my kitty would certainly help. I can't imagine being without them.

Thursday, December 15, 2011

Giving Up

I'm done. I'm not even sure what I mean when I say that but I'm fed up, done, I give up. It doesn't help my attitude any that I'm crashing. It's not a horrible one but given all that's going on I'm surprised it hasn't happened earlier.

I had the colonoscopy Tuesday. I was up all night Monday due to the prep. The colonoscopy itself wasn't bad although it did hurt when they removed a polyp. I remember asking the doctor "is that supposed to hurt?" I don't remember his reply but I think they increased the versed. It continued to hurt and then I was out and don't remember the rest of it. I ended up having 10mg of Versed. I don't remember the ride home.

The GI doctor sent the polyp off to be biopsied and it came back premalignant so I'm supposed to call them first thing tomorrow morning.

I had a phone consult with my ME doctor today. I almost started sobbing on the phone as I told him that I'm continuing to get more discouraged and hopeless about my situation. I had to fight off the tears because I couldn't afford to pay for anymore time than I already did. He said that it sounds like right now success for me is just putting one foot in front of the other.

He was very concerned to hear that my problems with swallowing are continuing to progress. First it was just trouble with big pills, then I had to stop eating certain foods, and now at times even swallowing saliva is difficult. The other day I couldn't get jello down because the swallowing muscles just stopped working so the jello sat in my throat until finally I was able to swallow. It's a bit unnerving.

My doctor wants me to do the Patricia Kane protocol and get a heplock so I can do IV's at home. He said the PK protocol is good for neurodegenerative diseases like MS and ALS. He hopes that will help with the difficulty in swallowing or at least slow down the progression.

He thinks a big part of my problem is toxicity (including chemicals, toxins from viruses, bacterial infections, etc...). Once I get my body cleaned up then we would go back to tackling infections. Bartonella came up again. I said I couldn't tolerate the treatment. He said once I do the protocol I should be able to tolerate it.

I'm also getting tested to see if I'm a candidate for the KPU protocol. You can read about it here and/or here.

Because I'm under so much stress right now he wants to add in more adrenal support. So I'll start Ashwagandha and Cytozyme AD.

He recommended ginger root to see if it would help my GI symptoms. And he wants to test for parasites and believes that might be part of my problem. We'll also test for amino acid deficiency as well as other nutrient deficiencies. And he'll test me for a bunch of viruses.

My only problem is how am I going to pay for all of this. The testing will get paid for by insurance but the heplock and IV's?

I continue to have bad dreams about the break up. Even while in the relationship I would have a recurring dream where she would break up with me because she had met someone else and I would try to talk to her only to be met with coldness and apathy. Those dreams are still occurring. I had no idea how true they would turn out to be. I just want them to stop. I inevitably wake up out of the dream with that racy feeling.

My doctor believes that people who have been ill a long time end up with a body dominated by the sympathetic nervous system and this is why I'm waking up like this. The Prazosin should help with that. Now that I'm done with the colonoscopy and today got the crown on my tooth I can start the Prazosin. I told him my hesitation in starting it was the fainting. He recommended starting with half a dose and then increase it as I tolerate it better. He also assured me that fainting is not a common reaction even though it said so on the side effect profile provided by the pharmacy.

I need to find a place to live but haven't been able to find anything which is partly why I'm feeling so discouraged. If I had more money for rent it wouldn't be this difficult.

I've emailed lots of places. It turns out there are a lot of people on craigslist who are out to scam others. I've had a few replies from a guy supposedly in Africa who says of bunch of strange things and then tells me to contact whomever and give them all my information. Then there was the woman who wanted me to give her all the information to run a credit report and refused to provide any info until I had done that. Today I got a response telling me I had to be "God-fearing" or else he wouldn't rent to me.

Most people looking for someone to share a place don't bother to respond. The polite ones do and they are nice in the various ways they say they are looking for someone who is employed.

I have emailed everyone I know asking them about what it's like to live in various places. A high school friend moved me to tears when she said it breaks her heart to hear what's happening because she knew me to be one of the kindest and generous people she has met. She lives in Las Vegas and said the services there are terrible so I wouldn't be able to get any help with medical costs.

I suppose I should change the name of this blog to the Debbie Downer blog.

Things should get better one way or another. Apologies for not being cheerful or optimistic. Hopefully tomorrow will be better. I'll be glad when the Holidays are over.

Monday, December 12, 2011

Losing My Perspective

I've continued to crash but (knock on wood) it isn't a bad one. The colonoscopy prep today feels a bit hard on my body but I think that has more to do with not eating. I'm drinking clear Gatorade as well as vegetable bouillon to help with the POTS symptoms.

The past couple days I have felt so fatigued but it feels different than the regular crash fatigue I normally feel. Or maybe my sleep pattern is shifting to oversleeping. I've slept over 11 hours the past 2 nights. I would be asleep right now but I have to take Dulcolax in 15 minutes followed by more magnesium citrate in an hour. I imagine I'll be busy the rest of the night. My sister will be picking me at the ungodly hour of 6:00 am for the colonoscopy.

My brain has felt weird as if I'm lightheaded. The past couple days I've felt this weird combination of feeling like I'm carrying 500 pounds while also feeling very light.

I had a dream last night that I was shopping with my friend Bobby (who in real life was killed 2 years ago). In real life we were really close and used to go shopping together in SF. We were shopping at this shop that sold really cool golf clothes. We were as happy as can be as we sorted through various cool golf clothes.

I woke up realizing all that has recently happened in my life and immediately felt depressed. Not only are golf clothes not cool : )  but I really don't like my reality right now.

I've decided against Palm Springs after doing some research. I wanted to clarify something in my last post. I do not believe that mold causes ME. I  believe it can influence ones symptoms as it can with any chronic illness. It has been a factor in my illness but not the cause.

I have to admit I was surprised to see part of my last blog post on Facebook the other day. In the past most people have given me the courtesy of asking permission before reposting.

I'm feeling a bit irritable and have a pounding headache on one side of my head most likely from not having my green tea today and also from not eating.

I'm discouraged about the housing search. All I want is a safe, warm place I can afford where I can also have my dog and cat and where I'm not socially isolated.

I've asked everybody I know about what their opinion is on living in various locations. I'm considering Eugene, Oregon because the cost of living is not as high here and I'd still be near family but I'm concerned about all the rain.

My youngest sister invited me over for Christmas Eve dinner which is a treat since she is the best cook around. She even won a couple awards at the Fair this past summer.

I hope someday my posts will be more uplifting.

Tuesday, December 6, 2011

On Hold and Holding On

With the exception of choosing my Medicare Part D (drug) plan, all other decisions are on hold until Tuesday. Medicare's open enrollment ends tomorrow so I finally made that decision.

It's frightening having to rely on Medicare for medications and medical needs. The coverage is both expensive and bare bones. Medicare pays up to 80% for most things and less than that for others. So, if I need an MRI, or other tests I'll have a big out of pocket expense.

I need to make other decisions concerning the house and other things but at the urging of my sister am shelving those until after my colonoscopy Tuesday. I've been having some alarming GI symptoms that began over a year ago but have gotten worse over the past several weeks. It's unrelated to stress. I've had a change in bowel habits, pencil thin stools, along with random bleeding.

Upon moving I started seeing a different GI doctor. He has been excellent. He is not only kind but is able to explain things that even a cognitively challenged person like me can understand. As an added bonus he also knows about dysautonomia including POTS so I haven't had to convince him of what I need in terms of prep for the colonoscopy.

The reason I've delayed getting a colonoscopy is the prep along with the fasting can cause my blood sugar to go really low. Also, with the POTS I'm easily dehydrated. Both can contribute to a fainting episode. When I had my endoscopy I was so dehydrated the nurse couldn't find a vein to use. I had to talk her into giving me an IV. She kindly did so but was later reprimanded by the doctor. I was thankful she did because I was feeling faint even lying down.

I'm still nervous about the prep and fainting but I need to get this done. My new gastroenterologist told me upon my arrival they would start an IV containing glucose. I'm grateful to him that I don't have to go through a long explanation that gets met with raised eyebrows as if I were exaggerating or being a hypochondriac.

The GI doc believes my mom likely died of colon cancer. It's not the first time I've heard this. Apparently it's common for colon cancer metastasize to the liver. Her oncologist at the time said my mom had a very aggressive form of cancer.

Also, I did not know that colon cancer, ovarian cancer, breast and prostate cancer all share the same gene  which means my sisters' and I are all at high risk of developing any of the above with the exception of prostate cancer. Anyone with a family history of colon cancer should get a colonoscopy 10 years prior to the recommended age of 50.

Once I get the results back I can continue with making decisions and transitioning to living in poverty. I can't wait. That is a really hard pill to swallow. No matter how much I try to figure out what to sacrifice I still do not have the money to pay for rent whether its a share or on my own. Then there is the added burden of people who do not want to share a place with someone is disabled. I don't blame them. I don't want to live with someone who is home all the time either.

In order to be able to afford to live anywhere I'll have to use about $400 per month in savings. That will last less than 1 year. I have to buy a bed, pay first and last month's rent plus a pet deposit, buy sheets, lamps, etc...and I'll have to pay moving expenses.

And then the medical expenses. If I see a doctor who charges $300 per visit, I have to pay $60. It all seems insurmountable. I have a car that needs repair. I'm already dipping into my savings to pay for the crown. I used up the flexplan and still owe the dentist $448.  And, I need to get glasses.

I won't have dental care or vision coverage because I can not afford to pay the high cost of a Medicare Advantage plan.

The hardest part of my day is waking up to this reality. It's like I have to get used to it over and over again. I spend a few hours each day looking at my expenses as if some new figure will suddenly pop up. Or trying to decide what else I can sacrifice. I will already be going without a landline and cable but I do need the internet. I can't go without food. And the rest of my check is taken up with a student loan and Medicare costs.

I might qualify for food stamps which would help. I'm going to apply for any aid I potentially qualify for.

And I'm grieving.

But there are moments like last week when I was able to drive 4 miles to and from the lab to get my blood drawn and then again to the dentist. I had a great time. Or when my nephew asked if I wanted to watch a Harry Potter movie with him. Or seeing his face light up upon opening his birthday gift. Or hearing my niece play the piano. She's a natural. I am so grateful for these sorts of moments and experiences. That is the one positive outcome of this disease is the ability to find joy in small things as well as the ability to feel grateful for those things.

One of the most striking things about the ME community is the ability to make sacred the small things in life. I think of all the books published by ME patients. And all the artwork. It's inspiring.

So I'm holding onto experiences as mentioned above. They get me through to the next moment or hour or day.