Saturday, June 28, 2008

I've Had It

I've had it with remaining silent while putting up with bullshit. I'm hoping I'll be able to communicate what I'm feeling today. There's stuff that I won't say here simply out of respect.

First, an update about my dad. He had a cytoscopy this morning. They found an odd raw spot on his bladder. The doctor doesn't know what it is but took samples for it to be biopsied. Could be bladder cancer but if it is then the treatment is just what happened this morning. People live a long time with bladder cancer. The doctor isn't sure if this will clear things up. If not, the next step is a colonoscopy. Apparently something in the colon can cause some problems like this. He'll remain in the hospital tonight. They will take the catheter out to see how he does. He had a bad night last night. His bladder went into spasms and pushed the catheter out. It sounds incredibly p ainful. My other sister will go up tomorrow. I think she forgot that she talked about me going up too. Oh well. If I decide to go up I'll find a way.

All too often I don't speak up for myself. I've let myself be talked out of my truth and I've taken a passive role in far too many aspects of my life. My focus of life has been on my career-on fulfilling my dream of becoming a psychologist. All of my strengths went into that. I was aggressive, determined, dedicated, centered. The feedback I got from all of my supervisors but two was that I was gifted at this work, a natural. My dissertation advisor, not one to give out praise easily, and has written many books, articles, and speaks all over the world,wrote in a letter of recommendation to the Jung Institute that I was one of the most intelligent students that he has encountered "in years." High praise coming from him. He also told me I had a gift and that because I had it I also had (have) a responsibility to write and to do this work. Doing therapy feels like what it must feel to do art. In regards to my career-my calling-I've been able to pull forth lots of aspects of myself that I don't in other areas of my life.

Things are changing in me. I no longer want to live a life editing my truths. It takes too much energy. At this point I have a choice. I can experience the inner fallout of not standing up for myself or saying the difficult thing or I can experience the outer fallout (as well as inner) of people having reactions to what I have to say. The inner fallout with this is the guilt and self-doubt that often occurs after saying something that isn't easy to hear.

This stuff with my dad has stirred up a lot of feelings.

It's clear though that one aspect of my healing will be to begin to speak up for myself. I will no longer try and protect other people from the pain of hearing things that I have to say that might be unpleasant. I also know that part of the protection is protecting myself from the inner fallout that I'll experience. I can survive both. If I can survive this god awful illness I can survive anything.

I've spent way too much energy trying to contort myself into positions in order to fit in and be accepted.

I've sacrificed myself over and over again. Change involves sacrifice. I've tried to sacrifice the wrong thing-me. Now I'll need to risk sacrificing my relationships with others. I already feel alone so what does it matter anymore really. Except that now I'll gain something.

"You do not have to be good. You do not have to walk on your knees for a hundred miles through the desert, repenting. You only have to let the soft animal of your body love what it loves. Tell me about despair, yours, and I will tell you mine. Meanwhile the world goes on. Meanwhile the sun and the clear pebbles of the rain are moving across the landscapes, over the prairies and the deep trees, the mountains and the rivers. Meanwhile the wild geese, high in the clean blue air, are heading home again. Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting--over and over announcing your place in the family of things."

What I will gain will be priceless. I will finally find my place and "hear the world announcing my place in the family of things." I will belong.

"we barely recognize the annunciation when it comes, declaring: Here is the life you have tried to throw away. Here is your second chance. Here is the destiny you tried to shake off by inventing a hundred different false roles, a hundred false identities for yourself. It will look at first like disaster (yes, it does at that), but is really good fortune in disguise, since fate too knows how to follow your evasions through a hundred forms of its own. Now you will become at last the one you intended to be..."

My fight is back, at least for today. It feels good. I will no longer try and throw away my life.

Friday, June 27, 2008

Hospital Again

My dad was finally admitted to the hospital after his 5th trip to the ER today. My sister is with him. I'm glad she's there. Tomorrow he'll undergo a cytoscopy to find out why he can't pee and why his bladder keeps forming blood clots.

I spoke with my other sister today to find out whether or not I need to go up. I'd like to be there but it's a 3 hour trip and my dad's wife isn't too keen on me for some reason so we would probably stay in a hotel. It's hard for me to make decisions so I'm relying on my sisters' a lot right now for information and help in this area. We'll know more after his procedure tomorrow.

I've been feeling pretty awful physically. I'm not sure if it's a herx anymore. I feel incredibly fatigued, and weak. Today while talking to my sister I felt pretty woozy. I left a message for my doctor's office to call but never heard anything. I'd like to stop the antibiotics, and herbs for a few days but don't know if that would ultimately make everything worse.

I was awakened by horrible stomach pain that I sometimes get. I know its an ulcer but it hasn't bothered me in at least a year. The strange thing is I get hiccups with it. It's a gnawing pain that wakes me up.

I made it through the MRI though. The open ones are much easier to tolerate than the closed ones. The valium, half a xanax, and lots of practice with relaxation stuff on my ipod all helped.

Monday, June 23, 2008

StrongSad

I'm embarrassed to admit how much I can relate to this character right now. Reading his blog was hilarious. I'm not going to list the link though...

I don't have perspective right now. I'm aware that I don't have perspective but that awareness just doesn't help. I feel like I'm starting over with the herxing but it's the mood ones starting in again and I find that the toughest. Also, the heart palpitations are a little freaky but that goes with babesia.

My brain isn't working right again so the cognitive herxing is back. I lose things and start to look for them. Soon I forget I've lost them but by then I've rediscovered something I lost earlier so I'm content. For the moment. It's just a bummer when I've lost something important and then forget about it.

I don't have access to my coping methods of running, working out, shopping, seeing friends so I have to find other ways to cope. I've discovered some other things to do but when this mood stuff happens the thing that is the quickest fix for me is being physically active.

Right now I'm listening to music on my ipod which helps a little. Talking about things helps. Writing helps. But nothing takes away that inner sense of despair I have about dealing with all this. In the back of my mind I know I need to wait this out because it will pass but in the moment it doesn't feel like it. And it feels unfair to throw in the shoulder thing on top of it. I don't want to have an MRI and I don't want to have surgery. If I wasn't so dizzy I'd like to throw a temper tantrum about it all.

I got my check from the IRS. It's a third of what I was supposed to get. Somehow that felt like I failed. It's completely irrational.

I was reading through the book: Diagnosis and Treatment of Babesia: Lyme's Cruel Cousin-The OTHER Tick-Borne Infection. Along with a spotted rash (which I had last June while staying in Guerneville) it lists the following symptoms: dullness, listless, chills, sweats, headaches, fatigue, sleep more than 8 1/2 hours per day. The books lists the 79 symptoms that are used as a diagnostic guide for lyme disease. I have 52 of them.

It lists some emotional symptoms including depression and anxiety. Other emotional symptoms include primitive emotions, trouble finishing tasks, distractability, stress with transitions or change, spaciness, regressed feelings and thoughts, and others. This things are above and beyond the normal life stuff.

I'm trying to get out of denial that I have this. One would think that reading about it would provide me with a sense of relief. It did yesterday. I'm unclear about everything today including this diagnosis.

The results came out about the Valcyte study done by J. Montoya, MD. Not as promising as it initially looked. The results showed only a 10% average decrease in fatigue levels though it did show a significant increase in cognitive functioning. I still don't know all the details but it is hitting some people in the CFS community pretty hard.

I'm glad I've been spared going on Valcyte. Hopefully I won't have to do an antiviral at all. I'll retest the viruses in a couple months.

This treatment is long and it's hard. Today I wanted to give up. But what does that mean really? I can't give up. Actually, I can give up and I do know what it means but I choose not to. Sometimes it's a purely intellectual choice.

I just wish I could get a medal or a ribbon like I used to when I would win swimming races, for surviving the day. A prize-that's what I want. Today would be a good day to get a prize.

Or I could just say fuck it and purchase that Dell computer-it's the XPS 1530. Midnight blue. I build it everynight. And then I would be Flight Simulator X and pretend I was flying. And I would also buy Spore and build my own little universe where I'm not sick.

I don't get it.

I got discharged from physical therapy. After 3 visits (including the evaluation). I understand but the system is so different than what I've been used to at Kaiser. Kaiser Oakland is really wonderful. I was really lucky.

I had one physical therapy evaluation. Today was my second physical therapy session. I'm not making any improvements, according to the physical therapist. I guess it doesn't matter what my opinion is because I'm experiencing less pain than before. Or maybe it's not that it's less pain it's just less constant pain. My range of motion has improved in some areas and remained the same in others.

The physical therapist thinks something is "really wrong" and believes I need surgery. He said he hopes he is wrong. I kept pressing him with questions but either he doesn't quite know what he's talking about or he doesn't want to say what he knows, but I couldn't get a clear reason why he thinks I need surgery, what muscles/tendons are involved, and what sort of surgery he thinks I need. I got a little confrontive with him and said he must have some idea and that I would rather hear his truthful opinion rather than have to guess at what might be wrong so he said he thinks I might have a complete tear of the rotator cuff but then backtracked. I also couldn't get him to clearly explain his reasoning for discharging me after this short amount of time. At the same time I don't want to continue with physical therapy if it's going to make whatever is wrong worse. It's just that my doctor thinks I need to stay in physical therapy.

When I was at Kaiser I continued with physical therapy even though it was clear I was going to need surgery so I don't get it.

At the same time I'm a bit relieved because I haven't been very impressed with this physical therapist or the physical therapy center itself. This way I can ask around to find out where to locate a good physical therapist. It has helped though, especially the ultrasound and then icing afterwards.

We'll see what the MRI shows.

Needless to say I'm more than discouraged. I'm also not feeling well at all. I can't imagine going through surgery right now.

I don't know why I even bother praying anymore.

Sunday, June 22, 2008

Catching Up

I decided to write even though I'm feeling pretty sick. I want to current with this blog because it helps with tracking everything.

I started the colloidal silver on Thursday and re-started the Anti-Babesia herbs as well. I've backed off some of the supplements and will probably back off even more.

Friday, Saturday, and today I've felt pretty sick physically with flu-like symptoms including muscle aches-now with my legs, and continuing with upper back, neck, forearms; swollen, painful lymph nodes. And my shoulder is killing me. My doctor gave me vicoden which helps a little but not much. Advil doesn't even touch it. I also get intermittent nausea, weakness, some wooziness, increased sweats, fatigue, and some chills. The weird thing is the dizziness has decreased. I also have very strange mood swings.

I have an MRI scheduled for this Thursday. It's an open MRI. I'm still anxious but am doing relaxation exercises daily to prepare. I hope I don't have a panic attack or pass out. I also hope I don't have to have the contract dye-I had a weird reaction when I had it for my back. That was back when I was healthy. Who knows how my body will react now.

I'm not able to do much but I'm not as depressed about it now. I feel like I'm finally on the right path to getting some level of functionality back. I bought a book on babesia by James Shaller, MD. Reading through it was an eye opener. It's pretty clear that's one of the things going on with me. It's also good I'm finally being treated for it as it can be quite serious.

When I'm feeling better I need to explain more why I've felt so angry at my old acupuncturist. It will make more sense then. I've been seeing him this time around twice monthly since Sept, 07.

My dad went back to the ER Thursday night and got the catheter put back in. He saw a nurse practitioner Friday morning and they got referred to a different urologist thank goodness. Now they need to find out what's causing the blockage. I spoke to him Friday. He sounded good considering. It was such a relief to talk to him. I don't feel as panicked as I did. Hopefully whatever it is can be resolved without surgery. I'd rather him not have to go through that given his leukemia.

I also hope I won't have to have surgery.

I think that's it for now.

Thursday, June 19, 2008

Still Waiting...

My dad was released from the ER on Tuesday night. Preliminary results from the CT scan showed the presence of small clots? His bladder was damaged from the radiation therapy from when he had prostate cancer 17 years ago so they think it is making blood clots which blocked urine output. So he was discharged from the ER with a catheter. He was supposed to see his urologist yesterday but they never even got a returned phone call in spite of LuAnn calling them 4 times. Apparently the urologist and his oncologist were supposed to read the CT scan.

This morning the urologist called and told my dad to return to the ER. I wasn't awake when my dad left me the message this morning saying they were returning to the ER. It's now 6:30 and still no word...

In the meantime I'm trying to occupy myself with various other things to worry about. I'm herxing again with feeling weird mood swings, weakness, lightheadedness, shoulder pain has increased. My other medication arrived. I'll most likely start Armour Thyroid tomorrow. I started Colloidial Silver today. I've read some good things about it but I have to admit it's kind of strange taking silver and water. I just hope I don't end up on Oprah. If I had a choice between being blue and being healthy, I'd take blue.

I've made a couple friends from the various internet boards I'm on. It's nice to have contact with people going through the same thing. There's a lot of crazy people on those boards too-whewee.

Saw my HMO doctor yesterday. I like him as a person. He's relieved I'm seeing someone who is treating the chronic illness part. We had an honest discussion about how much he dislikes dealing with illnesses like mine because he feels helpless as a doctor. I appreciated his candor and had some empathy for him. He did feel good that he is able to help me with my shoulder. Unfortunately that means an MRI. He did a shoulder exam which hurt and said I may need surgery but he will try conservative measures first. I told him that I'm severely claustrophobic about MRI's so he'll refer me for an open MRI though they aren't all that open but better than the coffin like structures of a regular MRI.

Then he said "how about I'll give you something that will get you snowed." Snowed? "Snowed sounds good to me," I say thinking to myself good I bet he'll give me something so strong I won't even be aware I'm having an MRI. He's talking while writing the prescription, "let's see. Okay-one Valium. 10mg. That should get you pretty snowed." OMG-that won't even cut it I'm thinking but too self-conscious to say so especially if he thinks 10mg of Valium will get me "snowed." I had to take 3 Valium just to get through the MRI for my lower back. I have a high tolerance for things. Luckily I don't drink-otherwise it would be very expensive. Anyway, I'm sure he'll be fine writing another prescription for one more Valium. I think I need more than "snowed." I'm thinking I need to be "blizzarded." I think that takes 3 Valium.

I dreamt last night that I was running through some field that had ticks in them.

Tuesday, June 17, 2008

Distracting Myself

I just spoke with my dad. It was so good to hear his voice. He even made a joke but had to cut the conversation short because he was on his was to the ER. Alarming but not surprising. He should have been hospitalized last night. Blood work ruled out a bladder infection, kidney stones so a CT with contract dye was scheduled for first thing tomorrow morning but he is retaining a lot of fluid. I think there was more going on that they weren't saying simply for lack of time.

I just pray he will be okay. I keep having to pull myself back from the edge of panic. This brings back lots of bad memories that I would rather leave in the past. I love my dad just want him to get better.

So now I wait by the phone for word on what's going on. I wish I was there. I wish I were well enough to get in the car right now and drive up there. It tears me up inside that I can't.

I have witnessed the beauty of life but I have also witnessed its cruelty. I have learned that life has both. I don't like it but there it is.

I have a lot to say but I don't have the brain to communicate it all. It's been a long day filled with worry. I didn't sleep well last night. My body doesn't handle this increase in adrenaline very well so I've increased my cortef temporarily.

I spoke with my doctor today. He's the one in Santa Rosa who specializes in chronic disease. I have babesia and most likely lyme disease. I may also have mycoplasma infection and/or chlamydia pneumonia (no, it's not an STD). My doctor said based on my symptoms that I have babesia which is a tick borne infection. He also thinks I have lyme. Babesia, lyme, mycoplasma (which can also be tick borne), and chlamydia pneumonia are all bacterial infections. This explains the symptoms I've been having since taking the Minocycline and the herbs for babesia. It also explains why I've been getting worse and not better since stopping work in December.

Which brings me to a rant. I am so angry at the person I used to see for acupuncture. I have been bringing up the possibility of lyme disease with him since December. Now this man claims to be a specialist in treating lyme disease and chronic infections. I have been dismissed by him on so many occasions. A couple months ago I practically begged him to start giving me herbs to treat me for lyme disease. He didn't. Even though I have most of the symptoms. Even though it was clear that acupuncture and his herbal treatments weren't working. Even though I continued to deteriorate. It is irresponsible. Had I begun some sort of treatment way back in September when I started seeing him again, I would NOT have gotten this bad.

Every single symptom and indication pointed to lyme disease. At one point after I brought it up for the umpteenth time, he said "well it sure would tie together what's been going on with you." The unspoken sentence was left hanging there "but it's not what's going on with you."

I would not feel so angry at him if he hadn't told me he specialized in this stuff. John has a lot of good qualities and I think he is probably pretty good at acupuncture but will I refer him to anyone? You bet your ass I won't. I think he's a fantastic salesman though. Would I hire him to sell cars for me? You bet. I think he knows how to take a little bit of truth and make generalizations that make him sound better than he is.

More than feeling angry at him though is my anger at myself. It's my health and it's my responsibility and I've had a gut feeling about this for a long time. I just let him talk me out of my truth over and over again. Ultimately, it's my bad. He had a part yes-a big part. But I knew and I didn't listen to myself. That's the kicker for me.


The good news is that I'm on the right treatment. The bad news is it's a rough road. I'll continue with the Minocycline. I'll also continue treating the babesia with herbs for another month and then switch to an antibiotic/anti malarial drug to treat the babesia. The herx from "babs" is very, very rough. It's also a hard bug to kill, as is lyme once it gets entrenched in your system as it has with mine. I'll be starting on collodial silver which is a natural antiviral. This will help knock down the Epstein Barr virus and HHV-6 virus-both of which are still active. It will also help with the babesia.

There is a DVD out that I highly recommend called Under Our Skin. It's about Lyme Disease which is becoming an epidemic in this country. And a deadly one at that. I saw that trailer for it and it looks really good.

my sister is on the phone, gotta go.

Monday, June 16, 2008

My dad is ill...Please pray for him

My sister called tonight to say that my dad was ill. I spoke to him yesterday to wish him a Happy Father's Day. He was too ill to drive down. I could tell he wasn't feel well at all. Neither one of us are able to talk when really feeling badly so it was a conversation filled with silences. We both understood though. I got off the phone with a bad feeling in my gut but shook it off thinking it was related to the whole Tim Russert thing on Friday. I kept telling myself he just has "a stomach bug."

Turns out it's something more but what it is isn't clear at this point. He both has and doesn't have symptoms of a bladder infection but last night was awakened by bad pain. My dad isn't one to complain about pain so when he talks about it you know he hurts. They went to the doctor today and saw his oncologist who ran a bunch of tests but didn't put him on any antibiotics. Just gave them a prescription for vicoden, and scheduled an MRI for Friday. Friday is too far away. Apparently the doctor doesn't want to start any antibiotics because it might interfere with the something he "needs to see on the MRI." Wha? How can antibiotics interfere with an MRI? I'm not impressed with his doctor's but I don't trust doctor's readily given what happened with my mom. My dad's wife called his doctor again this evening because my dad's pain was increasing, even with the vicoden.

My dad is in bed and can't talk because he's in so much pain. This is so unlike my dad that it frightens me. The fact that he's in bed itself is a statement of how bad he feels. It breaks my heart to think of him in that much pain and discomfort. I wish I could be there to help LuAnn out. She broke her wrist last week. They live almost 3 hours away. I wish I could be there with my dad.

It makes me more pissed off at this damn illness that it renders me so powerless to help my family. If I have to I'll take Provigil and drive up there. They are more important than anything, damn it.

If you read this and believe in prayer, please pray for him. And for all of us. We need him.

Saturday, June 14, 2008

Thank Goodness for Old Navy

The past couple nights I've had enough energy to go to Old Navy and purchase a couple things spending very little money while at the same time getting some comfy things to wear around the apt. It always helps. I found a great t-shirt for 3.44.

I think the antibiotics are helping. I'm having many symptoms in response to them including muscle aches (today), swollen glands, mood swings (past week), spaciness, and a huge reduction in my IQ-huge.

For example. Yesterday I decided to take a chance and go to the new Border's to purchase a booklight. I wasn't feeling well but I was also a little restless. I was wearing a pair of flipflops that were new. Because I do almost no activity I have no muscles anymore so wearing them felt a bit challenging (also because my overall weakness physically). When I got into the store I realized I had to go to the bathroom but it was upstairs and to get there I would have to negotiate the escalator with my flip flops. When I was probably 4 years old I saw a woman fall down the escalator. Ever since then I've had some cautiousness when it comes to escalators. I ended up walking around the store for awhile trying to figure out whether or not I wanted to risk it. I was starting to feel dizzy on top of everything else. In the end (no pun intended) my bladder won out so up the escalator I went. I found the bathroom and then realized too late that there was no toilet paper. While sitting there trying to figure out what to do a lady barged-and I mean barged-into the stall. I left the restroom a bit agitated, went downstairs and stood in line to buy the booklight.

While at the cash register I pondered whether or not to tell the guy that there was no toilet paper in the women's restroom. I decided to tell him so I suddenly blurted out "there's no toilet paper in the women's restroom." Clearly uncomfortable he said "I'll tell my manager." I stood there for a few seconds while he struggled with trying to figure out why the booklight wouldn't ring up. I was uncomfortable with the silence and wondered if I had sounded abrupt so I decided to try and make small talk: "It's nice having a Border's here." "Thank-you" he said. I wasn't complementing you. He finally rang up my booklight. Transaction completed. I think I'll try to stop making small talk. It seems I've lost my ability to judge what is appropriate or not. I think it was okay to tell him about the toilet paper.

I'm having some additional symptoms starting yesterday. Some return of night sweats, heart palpitations, and I can't remember what else now. The symptoms match babesia. The whole purpose of this blog was for me to track my symptoms, activity level, and give me a place to vent but I haven't been utilizing it well. I speak to my doctor on Tuesday and want to be prepared. I wonder if I should tell him about the toilet paper.

I'm anxious to see what he thinks about why I'm reacting to the antibiotics. I also feel more hopeful about returning to some level of functioning. I don't know what it will look like but it's nice to have some hope.

I'm doing physical therapy stretches for my shoulder which continues to be ultra painful. I'm trying not to go the vicoden route. I see my primary care doctor on Weds. The problem is that I am awakened by pain every night and I can't sleep on my right side because the pain gets so bad. I have very little range of motion. Next week is a week of medical appointments-two doctor's a physical therapy. I'd rather spend my energy doing something else. I'm realizing how important it is not to be identified as a patient.

Which brings me to Father's Day. I love my dad and would love nothing more than to spend time with him tomorrow. But I can't. It looks like he will be driving down and will be spending it at my sisters house which means everyone will be together and I'll be here. I am not able to make a 35 minute drive much less be out of the house for more than 60-90 minutes at a time. I can't tell you how sad it makes me to know my family is getting together but I can't be there. And it's not like I have a 24 hour flu or even a 5 day flu but it's something that has affected my ability to be out in the world for a long time. I've been trying not to think about it because when I do I want to cry.

I just pray I get a second chance at life.

Monday, June 9, 2008

Physical Therapy

I made it through without fainting. The evaluation lasted an hour plus I had to wait for 30 minutes. I was worried about what would happen and it feels like a victory that I made it through. It also felt good to be involved in something other than researching how I can get better. I've always been very physically active-I did a triathlon, trained for marathons (though I never ran one), worked out at the gym 5x per week. When I was young I was outdoors all the time so it felt good to be doing something. I had an awkward moment when the physical therapist asked me if I had any illnesses. Now that's a tricky one.

I have so much compassion for people who struggle with chronic illnesses. I didn't want to admit to him that I was sick. I mentioned something about getting tested for various viruses. But then he thought I had HIV so I had to correct him and get more specific. He had a confused look on his face and rightly so-I was unclear. I eventually ended up saying I haven't been diagnosed with anything but that I might have Epstein Barr or something like that. The other challenging thing for me is that with my brain not functioning correctly I could not figure out how to copy his movements when he tried to explain and show me how to do the shoulder stretches. Luckily he was patient but he did have to actually grab my hands and arms and position them correctly. It was quite a different experience than when I had physical therapy for my back and foot.

Unfortunately he mentioned that I might have to have surgery. As we were going through the evaluation he said wow something is totally wrong! I thought to myself those have become fighting words with me so be careful! He said I might have a bad rotator cuff tear which is what I've been afraid of. I'm determined to avoid surgery. I'll do the physical therapy exercises twice a day. I just hope I remember how to do them. I have instructions with pictures but like I said my brain isn't all there.

I stopped the Minocycline today for two reasons. One is that it's having some weird mood effects on me. Yesterday the Golden Gate Bridge was looking pretty good. It's indescribable what happens. It's a weird, awful depression that isn't really depression but worse. I did some research and because the pathogen has affected my brain, the mood is part of the herx. The good news is that the Minocycline is doing something. It's like that saying the good news is the treatment worked, the bad news is the patient died. I also got my Igenex kit to be tested for Lyme Disease. I contacted the lab who told me I need to be off antibiotics for 1 week so I'll get a break. Then next Tuesday I'll talk to my doctor. I'll restart the Minocycline after the test. I'd like to tough if out if possible because it works on a lot of pathogens.

I had a glass of water with fresh squeezed lemon in it. It was delicious. I can't believe how different fresh lemons are than the ones bought in a store. I also have a bag of books to enter into my store.

Saturday, June 7, 2008

Another Saturday Night

I had a few moments of feeling a little better today, especially my brain. I just stood there for a long time feeling what it was like. It didn't last long but that's okay. I went out for a little walk. It was so strange to remember what it felt like to feel somewhat normal in my brain-physically I was getting dizzy but the cognitive improvement was really nice while it lasted.

I'm looking into mycoplasma's and other bacterial infections.

I think I'm going to buy photoshop elements or whatever it's called. I took a lot of pictures of flowers but can't do anything about them. I think it would be a nice project for me to occupy myself. It's just hard to justify spending the money. On the other hand it's not hard to justify at all buying a brand new computer with a Dell credit card that would have photoshop element on it. It's getting harder to fight the urge.

I'm almost done with the SSDI application. I have to call on Monday because I have some questions. I really, really want my life back. Those moments today were so nice. I still wasn't well at all but it was so nice to have a break from the yuckiness. It would be so great to go shopping in the City or go for a hike or better yet-camp. I really really want to go camping at Joshua Tree.

Friday, June 6, 2008

Another Day Thank Goodness

The good news is that I don't feel as bad as I did on Weds. I think that the acupuncture experience kind of shook me up. I won't be going back. I've had this feeling over the past few months that it just isn't working. I also think that this acupuncturist has a real shadow side of being a major bullshitter. The whole experience of him taking a picture of my tongue is just bizarre and disturbing, even more so that I didn't get an explanation for why it happened. In thinking about it I believe that his ego was hurt because I sought out another doctor because it was clear that the acupuncture treatment wasn't working. I'm disappointed to let it go simply for the fact that it gave me hope and hope is critical with chronic illness.

I am herxing though. The antibiotics are causing some sort of die off reaction. This morning I woke up with a stiff, sore neck, painful swollen glands, headaches, sore muscles, burning eyes. The swollen glands and neck stiffness and achiness were probably as bad as they've ever been. I got a little alarmed at one point but then had to realize that I was also feeling some weird anxiety. I've been putting a neck warmer in the microwave and putting it on my neck and swollen lymph nodes. It helps.

I've realized how lousy it feels on an emotional level to be identified as a patient or someone who is ill. I can't describe it. It's easy to get lost in this illness. I'm trying to find a balance between researching and learning so I can be proactive vs obsessively looking for information and losing myself as a result.

Even though I wasn't feeling good physically, I at least had some perspective. That left me when the 30 page SSDI packet arrived. I'd already spent a good 5 hours filling out the SSDI application online. It's a bit grueling for a lot of reasons-the main one for me is that I hate what it symbolizes; that I won't be returning to work anytime soon, if at all. At first I thought a couple months off and I'll be fine. When that passed I thought okay six months and then I'll be better. Now that it's six months I don't know anymore. Anyway, I looked at the 30 pages worth of forms to fill out and felt overwhelmed and depressed. Not just for the volume of work but it means going over again why I can't work and writing down all my symptoms. It means having to be reminded of the life I once had and writing down why I can't do things. I can't describe it very well. There is a question that says what did you used to be able to do that you can no longer do because of your illness? By the time I got finished answering I was crying.

Somehow I have to free myself from feeling identified with this illness. I think because I'm still new in it, it's hard to have perspective. I'm still learning. I'm also still struggling with accepting the limitations it has imposed.

I was looking through a book I read in school and came across what used to be one of my favorite quotes:

We barely recognize the annunciation when it comes,
declaring: Here is the life you have tried to throw away.
Here is your second chance. Here is the destiny you have
tried to shake off by inventing a hundred false roles, a hundred
false identities for yourself. It will look at first like disaster,
but is really good fortune in disguise, since fate too knows how
to follow your evasions through a hundred forms of its own.
Now you will become at last the one you intended to be. (p. 94)

--An Imaginary Life by David Malouf (1996)

_______________________________________

Now I have to figure out what it means for me in light of this. This is a great little book, by the way, about the main character's relation to the child, the wild uncivilized child, nourished in a place of exile in which he-the main character-is then increasingly enable to take on his true destiny. I think its time for me to read it again.

I have a credit card with Dell that would allow me to purchase a new computer if I wanted. I got really sad when I thought I'd better use it now because if I'm on ssdi I might never qualify for a credit card again. I think I might go ahead and get the computer. You never know it might be the last time I'd get to buy one with credit.

Wednesday, June 4, 2008

I give up

The song Runaway Train is playing right now. The lyrics are appropo:

So tired that I couldnt even sleep
So many secrets I couldnt keep
I promised myself I wouldnt weep
One more promise I couldnt keep.

It seems no one can help me now,
Im in too deep; theres no way out
This time I have really led myself astray

Runaway train, never going back
Wrong way on a one-way track
Seems like I should be getting somewhere
Somehow Im neither here nor there

Can you help me remember how to smile?
Make it somehow all seem worthwhile
How on earth did I get so jaded?
Lifes mystery seems so faded

--Soul Asylum
__________________________

I just got back from Acupuncture. No words of encouragement. I asked what he thinks my level of functioning will eventually be. He said he didn't know. That's the first time he's ever said that. He's always been encouraging telling me I'll get better or I'll return to at least 70%. Today I could have sworn he had a sad look in his eye.

He said my body is toxic right now from the herxing that is happening. When he looked at my tongue he actually asked if he could take a picture of it. It was so bad. He said that there is a firey heat (?-in Chinese Medicine) being produced in my body and my reserves aren't able to dampen it down. He said it's the fire is coming up through my head and scorching everything. He was very concerned. So he took a picture of my tongue. He teaches at various places in the bay area so I assume it will be used as a teaching tool. I've been seeing him for a total of 3 years now and I've never seen him so shocked and so unable to contain it. The weird thing is that I've been having the sensation that my tongue is burning. I thought it was due to the thrush.

He did say that explains why I've been feeling so badly lately.

Yesterday was another awful day. The mood herx is as bad as the physical one, even worse. I know it's the brain stuff but it's hard to reason with when it's happening.

I just feel like giving up. No one has any answers. I get a different one depending on who I ask. I wake up to the same day over and over. I want to have a life again and frankly I don't know if that's going to happen.

My acupuncturist told me how tough I am and commented on what I fighter and how high my tolerance is for discomfort, pain, and not feeling well. I agreed with him and also said but I'm tired now. I don't want to fight anymore-I'm at my limit. I can't do this for much longer. Something just has to give.

He was also concerned about my thyroid and said a 50% increase in the TSH level wasn't good. I know that damnit-just tell me what the hell I can do about it! I'm tired of being told how sick I am without any answers.

An agency of a forum that I joined offered to pay for the Igenex test. I emailed them all the requested information but have heard nothing since. I know I'm fixated on getting tested for lyme-If I have it I want to be on the right treatment. If I don't then let's move on to something else.

As I was laying on the acupuncture table I kept asking myself the question how can I make the best of this situation? I don't have an answer. I need to find some meaning in all of this. I've always been able to find meaning in things but this has challenged me. It will be coming up on a year since I've been sick. Six months now of being basically housebound with no improvement, a dwindling savings account, and doing everything I know how in order to fight this thing. It's winning. Hands down. Bloody Mother F****** A******.

Sunday, June 1, 2008

Signs of a life once dreamed

You know what's weird about this whole illness thing? It's almost like death. I've gone through my closet in preparation for the new dresser. My bookbag was in there. I'd forgotten about it. It was heavy. Filled with a life that I no longer live. Receipts, bookkeeping items from my practice. Magazines that I had saved for my job search. Old notes, and books. All signs preparing for a job, a new career, a life I thought I would live.

Along with the bookbag are the clothes I had bought for my post doc and potential new job. Running shoes I won't wear for those long runs I miss doing. New boots I'd bought at a sale at Macy's. Clothes still in their dry cleaning bag.

It reminded me of when my mom was sick. I remember sitting on the side of her bed talking to her late at night as she struggled with such decisions as figuring out whether or not to keep her dentist appointment to replace the crown that had fallen out or whether she should have my sister return the brand new dress she had just bought. I remember how terrified I would feel at the conversations. She would say something like "I don't know whether or not I should keep my dentist appointment. I don't think I'll need to get the crown replaced." Or, "should I return that new dress? I don't know if I'll ever wear it." I knew what she meant. I would leave and drive back to Oakland where I was living at the time hoping against hope that she would decide to keep her dentist appointment and keep the red dress. I had this magical wish that if she kept the dentist appointment that somehow it meant she would live awhile longer. I knew what it meant if she decided to cancel and return the dress. I remember coming back the next day and overhearing my sister saying she had canceled mom's dentist appointment. My heart fell to the floor in pieces.

I don't know what my future is. I can only hope. It does remind me that you never know when the last time you ever do something is going to be. Sometimes you get lucky and you know and you can say goodbye painful as that may be.

Thank Goodness

I don't feel as bad as I did yesterday. I was able to do some work around the apt-dishes, cleaned the kitchen, mopped the floor (very lightly). I still don't feel good by any means but today was a piece of cake compared to yesterday.

I'm getting a new dresser built right now. It's a real pretty blue color. It'll be nice not to have those temporary hanging things I've put up with for the past 2 years. It'll be even nicer to have a dresser again.

The woman who came by to look at the cottage won't be moving in. I'm so glad. Apparently she thought the neighbors were too negative. It worked! Turns out she was friends with the people who just moved out so she would have been another partier but worse than the previous neighbors.

The thrush isn't responding to the Nystatin yet. It's getting a bit more uncomfortable. I'm not sure what else to do for it. I guess maybe I could stop eating donuts. The one I had yesterday was delicious.

I printed something out on the new printer, fax, copier. It works great! Now I can print in color. I'm thinking of buying photoshop elements. I know nothing about photography or digital photography but it sure would be fun to play around with photo's on my computer. I think it would be more healthy than hanging out on the cfs forums that I joined awhile ago. Those forums can be really depressing. I've met a couple people whom I exchange emails with now and then.

I start physical therapy next week for my shoulder. I have no idea what they'll do. When I try and lift my arm over my head the pain is almost unbearable. Yesterday in the shower I lifted my arm over my head and practically had to sit down from the pain. I refuse to have more surgery.

I think I'll go dream about a new computer. I've been getting on Dell's website and building myself a computer. I found out I still have a $1500 credit line through them. Sometimes knowledge can be a dangerous thing...