Friday, August 29, 2008

Fear

I've just been looking up my classmates from my PhD program to see who has published or not. Then looked at my old dissertation adviser's website, books, publications.

I remember that he whispered in my ear as he was hugging me after I passed my defense "you have to publish now. You're called to do so." He is a phenomenologist, psychologist, author, professor, and poet. He's devoted to Jung, Soul, and Alchemy.

The time I was happiest in my life was while training at the Jung Institute and in school. It was the life I was meant to have. I got off track. Then life happened. Then I got sick.

It's clear I need a reason to get better. I have many but this is deep, deep to my heart and soul. It's my calling. It's clear to me I've lost touch with something very precious to me and I need to find my way back.

I think getting well again (as well as I can) and getting back into this work in some way are linked. Each will feed the other. I have to get my mind back.

I've been thinking about building my own website. I have no idea how but once I fully commit to something I'm very determined.

Separate but related to illness holding me back is fear. I was a very, very shy, quiet kid growing up. I was not meant to move around like we did the first 8 years of my life. I had no self confidence. Not only that but I always felt different like I never quite fit in.

One of the few places I've felt most at home are the Jung Institute, Pacifica Graduate Institute and it's location, and New Mexico where I was born.

The illness makes the fear seem larger. It makes everything seem worse. We regress when ill.

So I have to face my fear and I have to fight on an entire different level. I have to fight to regain my place in the world where I'm meant to be.

I strayed from my democratic roots

I remember visiting my maternal grandparents. They were staunch democrats-Irish Catholic. They met John F. Kennedy. I always remember the letter he wrote to them thanking them for hosting some event he attended. It was hung above my the chair my grandfather always sat in.

I've been pretty disappointed with the democratic party for a lot of reasons. One of them being they always blow it and lose elections.

I was also a Hillary supporter. She has had to put up with a lot of stuff. Because I was sick and at home I watched all the news networks (until finally becoming disgusted with MSNBC because of how biased they were) so I saw all the comments that the pundits made. There was a lot of sexism. It was sickening.

Anyway, I'm going to vote democrat. Between Hillary, Bill, and Obama's speeches how could I not.

I am pleased though that there is a woman on the republican ticket for the first time in history. I like her-she seems gutsy.

I got more blood results back this week. I'll talk to my doctor about them on the 8th. My neutrophils are high. My WB have been steadily increasing. My blood glucose is at the very bottom number so I need to watch my blood sugar.

The staph infection in my toe seems to have halted in its healing. It's not 100%. When I soak it, it looks like it has an abscess but when I don't soak it, it looks like it's struggling.

When I've showered in the past 2 weeks I cover up my foot in plastic and then tape it. I'm very careful not to let the shower water get into it. Yesterday I decided to just take a shower and not worry about it. I stepped into the shower with my infected to first. And then the shower head came off. And landed smack on my big toe. It hurt-a lot. I was wishing I had vicodine last night.

I'm continuing to do my best to try and figure out how best to recover from this illness/disease-whatever it is. I'm researching and trying to get in for a second opinion. I finally got an appointment with a nationally known LLMD for 9/16. It's a lot of money for the initial consult. I'd rather be a little broke and healthy. I just need more answers.

I've been having bad dreams this week-very disturbing. Weds night I dreamt that I had a bug on me so I brushed it off. When it landed on the ground it immediately began growing. It grew as large as a big cat and it was a frightening shiny black color. It kept appearing everywhere I went and I couldn't kill it.

Tuesday, August 26, 2008

A little more punditing

I wasn't going to watch Hillary's speech tonight. But I did. Wow. It was amazing and inspiring. It made me cry. She should be the nominee or at least VP.

I still don't know if I'll vote for Obama. I have no idea what his policies are. I heard the speech he gave in 2002 (or 2004). He has done a good job at repeating it over and over. But what will he DO?

I'm trying to like him but I don't. I don't like him at all. I actually can't stand to hear him give a speech. The same way I felt about Bush.

I hope she runs in 2012.

Monday, August 25, 2008

Angry

I went out for a walk today. I'm trying to walk a little bit each day even if it's just going to the post office so I can get my blood moving.

As I was walking I realized that most of the grief I felt last year has lessened considerably. I also don't have the poor me feeling.

But I was feeling some anger. I'm angry that this just seemingly goes on and on. I'm angry at people who have dropped out of my life and angry that my attempts to reach some people have failed. I just need to let it go.

I'm trying to will my body to get better. I want to start swimming, bike riding, hike again. It's okay if I can no longer go running although I used to love running. I'd like to work at a job that is meaningful to me.

These past two weeks have been consumed with the Olympics. Today I watched some of the previews of the Democratic National Convention. Gag. I'm disgusted with both parties. They each blame each other for the mess we're in. The reality is both parties had a hand. I don't like either candidate. Barrack Obama is a master of words and great at inspiring people but his actions communicate another story. He's just another weak, lying, flip flopping politician. I'm still shocked he voted for that privacy invasion bill (I can't remember the name). He said a lot of great things to get the nomination but has anyone noticed his record since getting the nomination? Has anyone noticed his prior voting record at all? No. Because the media is falling all over themselves in love with him. It's too bad because the republicans will swift boat him and uncover issues and present a great case against him and we will lose another election.

I used to vote just because someone was a democrat. This year will be different. I have to say that after having to pay over $1000 this year in taxes when I made hardly any money was not good, especially when I needed the money for health issues. Obama promises tax cuts but I saw a list that showed what will actually happen with a democrat in office. I don't believe that Obama is strong enough to stand up for anything. His message should read Obama-change we can't believe in. The only change we can believe in is that he will change his mind. No different then any other politician. I hope that in 2012 there will be a candidate I do believe in.

When I think about what it's been like to deal with the current healthcare system with a chronic illness and who I want to be President I come up with someone who can't be bought (not Obama), who is a fighter, who has values and will stick by them, and who will actually do what's best for the people rather do what the highest bidder. Neither of the candidates fit that profile. At least McCain was known as a maverick.

Thursday, August 21, 2008

Updating

My toe is getting better thank goodness. I've been soaking it twice a day in warm water and epsom salts plus putting prescription strength antibiotic cream on it 3 times per day and then the 500mg of Clarithromycin (for the babesia).

Now I just have to get the cyst that is developing on the base of my toe treated once the staph infection clears up.

I received a reply on my blog from someone who has recovered from this. It was so great to read about someone actually recovering from this. It's definitely a battle.

I'm having some improvements with my current treatment:

Mepron 5ml twice a day
500mg Clarithromycin twice a day
Perque B12
Intrinsi B12/Folate 1/4 tab
Folapro 1/4 tab
General Vitamin Neurological Health Formula 1/4 tab
Phosphatidyl Serine Complex

Whey Protein Shake with rice milk, acetyl-l-carnitine, lots of fiber, and n-a-c for liver support.

I've had to stop all other supplements because they can interfere with Mepron.

I was having some kind of bad liver pain for a few days. In doing some reading I found out it could be die off, gallbladder, or liver pain from babesia as babesia can affect the liver. I had similar pain last year when I first started getting sick. The pain seems to have gone thank goodness.

I have to take Mepron with over 20grams of fat. Cod liver oil has about 15 grams per tablespoon so I've been taking it with cod liver oil with a cranberry or orange juice chaser. It's a dreadful combination. I tried p-nut butter but my mouth gets too dry.

I got an email from my sister that they found out that my dad's prostate cancer has spread to his bladder, at the very least. He'll see a bunch of doctor's next week once they arrive in Utah. He went for almost 2 years with being incorrectly diagnosed and is now suffering some pretty awful symptoms right now because of it. My heart goes out to him. I stopped in the church down the street and said some prayers for him.

I'm trying to find ways to focus on other things aside from the bad stuff going on. I'm not feeling plagued be the dizziness so I'm able to do a little more aside from lying on the couch.

Saturday, August 16, 2008

Don't Quit Poem

I've been trying to figure out how to upload a video of a poem I found on an inspirational website. But I can't figure out how to do it and I'm too tired to continue. I'm afraid I have to quit.

My toe is healing ever so slowly. It's driving me crazy that I have a staph infection (and small abcess). I'm having to do relaxation exercises whenever my anxiety about it creeps up. Too many horror stories come to mind and I have to counter them.

I met with the SSDI attorney yesterday. I'm sweating a lot because I'm starting to herx. I couldn't figure out why he offered to turn on the air conditioning until I realized I had almost soaked through my t-shirt. He looked a bit confused when I said no. He seemed nice and has a lot of experience with ssdi claims. I'm not invested in ssdi at all. I would rather work and working it what I'm shooting for.

I haven't been sleeping well because of my toe. It hurts too much to have it under the covers so I've been sleeping with a blanket over me and my foot sticking out. I wake up every couple hours worrying and checking in with my toe to see if it feels like its throbbing or painful.

One of my online friends found out she has lyme and babesia last week (I can't remember if I already posted about this). Although she is sicker than I am our symptoms are fairly similar except that she has been sick for 3 years. She made a really good point when she said that cfids isn't supposed to be progressive. If one is getting worse in spite of trying various treatments it's a good idea to get tested for lyme through lab that specializes in lyme testing.

Wednesday, August 13, 2008

Staph Infection

I went to the podiatrist today after having some redness along the toenail of my big toe. It didn't hurt very much at all. I toyed with the idea of calling a doctor yesterday but decided to wait and see. Last night my toe hurt a little more but nothing remarkable. I kept having dreams about needing to see a podiatrist. One dream I reached the office too late. It had already closed.

I decided to trust my dreams along with the redness. When the podiatrist cut away part of the nail, he told me I had a staph infection andn small abcess. Great. He tried to cut away more of the nail.He said he needed to get more of it but by that time I was in a lot of pain. Plus I'm a wimp when it comes to my toes. I don't know why. It doesn't matter. I kept squirming like a 5 year old. At one point he said it's important that you stop squirming. I couldn't do it.

As he was looking at it he kept saying hmmm, hmmm. Each time he said it my anxiety went up. I wanted to ask him what he meant. He was a little concerned because the infection started while I was on antibiotics-clarithromycin. I had just started it at half the dose on Monday.

He thinks the infection will be 95% clear by the time he sees me next week for a recheck and for him to do more cutting. Yikes. How am I going to get through that one.

I've been obsessing that it's MRSA and that I'll lose my toe. I hate when this happens. Part of this is a response to my new treatments. I have noticed that my anxiety has increased again in a strange way.

Of course it didn't help when I got on the internet to find out what I could do at home to speed healing along and I kept running across people's stories where the part would jump out at me-something like I had a staph infection in my toe and then it got amputated.

I'm not feeling well but I'm also not feeling horrible and I was able to make it through the 1 hour podiatrist appt without fainting.

My toe hurts though and with it comes the reminder that it might not heal says my fear.

I think the other reason why my anxiety and weird feelings are increased is that tomorrow is the anniversary of my mom's death. I used to love this time of year but ever since she died it has been rather mixed. After she died the light of summer went with her.

Sunday, August 10, 2008

More Catching Up

It's been a rather mixed week. I've had some okay days. For me, okay. For healthy people they would be rather yucky. At night I've had really bad dreams. Dreams that have haunted me ever since my mom died but I haven't had them like this for years.

Thursday night I kept dreaming that my mom was starting to get sick. Then I would realize she was dying. Then I'd realize she'd already died. Each realization would bring a sense of horror. I also dreamt that she was sick and dying but I coudn't find her and feared I wouldn't be able to find her in time. I'm not sure why this is happening. I dreamt about her again last night.

Tomorrow I start the babesia treatment. I'm dreading it not only because of the potential side effects but also the herxing can be just brutal emotionally and physically. I'll be on Mepron 1 teaspon twice a day and clarithromyocin 500mg twice a day. I'm hoping that I'll have an easy time of it. I'm also hoping it works.

I've been on the full simplified methylation cycle for 6 days now. I had some die off on Friday. Mostly I've been in what they call the honeymoon period where my body is feeling the positive effects of the supplements prior to the die off.

We'll see.

I love the Olympics. I love the stories about the athletes, love watching them compete and I love the idea of most of the countries in the world all competing. I'm moved to tears a lot.

I'm going to go watch some more.

Tuesday, August 5, 2008

Catching Up

There's a lot to catch up on. I doubt I'll have the energy but hopefully I can summarize.

I called my doctor's office and was able to speak to him the day after I had my reading (July 29). He was useless. He had no idea what was going on with me. I felt like I was back at square one. I got off the phone feeling incredibly discouraged and hopeless.

He decided to treat me for babesia which involves Mepron and a high dose of clarithromyocin (500mg twice daily). He also wanted me to restart the Methylation Protocol which I did the next day. This time he suggested I take one supplement for two days (a very tiny dose), and then add a supplement so I can figure out which supplement makes me feel "weird." The theory behind this is that if you feel bad from a supplement that usually indicates one your body needs. Normally these supplements don't have an impact on people who don't have a methylation block so feeling bad with a particular supplement points towards where a block might be. The easiest way to find out where and if one has a methylation block (in the methylation cycle) is to test for it. Then supplements can be tailored around the specific blocks. Amy Yasko developed the protocol for autistic kids. Then a man named Rich Van Konynenburg, PhD developed a simplified protocol in which he hypothesized might be helpful for people with cfids. This is a new treatment. I think it started in January of 2007.

So I started adding supplements last Weds. Today I added the last supplement so I'm now on the full simplified methylation protocol. Rich Van K is active on a couple forums I'm on. He is a very dedicated and kind man. I've figured out which supplement causes me the most problems. It's the Neurological Health Formula which is really an activated vitamin. It is supposedly composed of the body's basic chemistry and so it alone can pack a punch and cause the methylation cycle to kick in. Once that happens the immune system kicks in which is a great thing. Except in addition to the immune system kicking in, all the viruses, and bacterial stuff that was not being helped by the immune system also get activated. A big die off can occur and people can feel miserable. Detoxing is important during this process.

I tried to talk my doctor into prescribing some cholestyramine but he said he thought I would have more success with the Mepron and treatment for babesia. He doesn't think lyme is a factor at this point but warned it may become active once the babesia is treated.

I wish he sounded as sure as I was making the conversation out to be. I'm realizing his style is rather wishy washy. He'd make a great jungian analyst because they place great value on not knowing. However, in a medical doctor I want someone to be more definitive. I realize though with this illness, that's not possible yet.

He does think I have babesia but in the back of his mind he is also thinking viral. I wish he would treat me for the viral infection at the same time.

I was just hoping he would be able to say this is what's wrong with you and this is how we treat it. Even consulting with a cfs specialist yields no answers.

I am going to pursue a second opinion from a lyme literate doctor (LLMD). There is one that my online friends see. He is one of the top people in the CA. One friend is as sick as me and has viral issues as well as lyme. She is being treated for both. She is being seen by this doctor. He knows about lyme and it's co-infections, including babesia. He is very confident that he can help people achieve complete recovery.

There is a lot of controversy in the community regarding lyme. I recommend that everyone read Pamela Weintraub's book "Cure Unknown." Testing for lyme and coinfections is notoriously unreliable. Given its inherent unreliability, the most reliable tests are through IgeneX or Central Florida Labs. The Elisa test which is the standard used by most doctors is at most 35% reliable. I also think everyone should be tested for all viruses, lyme, it's co-infections, and mold poisoning.

I have lyme as part of my illness along with high titers to the Epstein Barr virus, and relatively high titers to HHV-6.

I'm hoping the methylation protocol will kick start my immune system into functioning again so I can effectively treat what's wrong with me.

My doctor doesn't believe that cfs in and of itself is an illness. He views it as being a descriptive term that warrants thorough investigation into finding the cause. That means searching under any rock. Routine medical test will not be effective in determining what's wrong.

I believe that genotype testing is on the cutting edge of finding out why some people respond to treatments and some don't. For example, there are those that responded to valcyte but others who didn't. Some people, who have lyme respond to antibiotic treatment, other's don't.

Some people aren't given the right tests so they are inappropriately given the wrong treatment. If lyme and its co-infections aren't properly treated you end up with chronic lyme.

Then throw in the issue of mold poisoning and mycotoxins, and biotoxins. It's all very, very complicated and involves lots of tests that insurance won't pay for.

But there is the possibility of improvement, if not out and out cure. I've had 20% improvement from the round of antibiotics I took. Someone who works at the place I used to work said that it usually takes between 4-6 months to see any improvement in lyme disease so the fact that I had 20% improvement in 10 weeks of treatment is encouraging.

I have a long ways to go. I know that doctor's aren't going to figure this out for me-they do not have the resources so it means I'm on the computer a lot researching this stuff. It's paying off.

I refuse to live my life like this. I just can't do it. I won't do it.

Oh, and try getting ah old of a lawyer? Good god. By the time I'm able to actually speak to one in person I'm afraid my 60 days will be up. I'm going to send in the notice of reconsideration tomorrow. I'm leaving messages just trying to find out if someone will take my case.

What I'm really hoping for is that the babesia treatment along with the methylation protocol will get me to a point where I can work.