Time

Where do I begin? I haven't blogged because I've been trying to absorb the latest news. One of our kitties has been diagnosed with terminal mammary duct cancer. The tumor is very large which means the cancer has spread. I asked the vet how long she has and the vet said "it depends. maybe months but she doesn't have a year." Its heartbreaking. This kitty (Tiger Lily) is so full of love. Her favorite things are laps (which equals love to her), food, and milk. She has a pure, innocent heart.

So there's me with my illness, Katie with chronic renal failure (I've been blessed that she is relatively stable-knock on wood), and now Tiger Lily.

These little beings have been my constant companions for the past two years since becoming ill. I've spent more time with them than anyone else so they are a big part of my world.

My anxiety has really increased, my nerves are shot, and I'm so terribly sad.

So I find myself once again in this weird relationship with time where, on the one hand I want time to pass quickly in terms of finishing Valcyte, getting on with other treatments, etc...but on the other hand I want time to standstill so that Tiger Lily will always be here.

Its been hard to focus on anything else or even write.

I just have to say how much I hate cancer-it took my mom at a young age, it took my cousin at a young age, my dad has prostate cancer and chronic lymphatic leukemia, it took my kitty Amelia, and now this little kitty has to suffer with it.

I had the Tilt Table Test on Thursday and passed. I was surprised as I was certain I would fail it. The cardiologist spoke to me afterwards and said it still doesn't rule out Postural Orthostatic Tachycardia Syndrome and said there was a significant change in my heart rate upon standing. I watched my blood pressure and heart rate each time the blood pressure cuff took its measurements. Laying down it averaged 88 beats per minute. Standing it went as high as 128 at one point but seemed to average around 105 beats per minute. My blood pressure was borderline high averaging about 141/92. It would drop, go up , go down and seemed like it was all over the place although the lowest it ever dropped was around 112/76. The doctor said I needed to increase my fluid and salt intake. Thanks to Sue Jackson's advice I've already been doing that although I need to drink V-8 every day. He also said to not stand in one place for very long and be careful when I get up.

I'm not sure what to think. I was hoping that I'd be able to take something that would increase my functioning. I said to the cardiologist I really want to be able to drive on the freeway again or drive without worrying about fainting. He said the next step would be to consult with a neurologist.

I did fine on Thursday and then crashed. I have all the symptoms of POTS. I'll talk to my CFS doctor about what's next in terms of the heart rate stuff.

So its been a rough go of it these past few days. I'll post a more thorough update on things once I feel a little better emotionally.

Hmmm...

After really thinking about it I've decided not to go private. I'll deal with the other stuff in some other way or at some future time maybe I will go private. It doesn't quite seem fair to finally be experiencing some improvements and then limit who can see it. I'm also aware that it's a pain to have to sign in to see a blog especially when one is having a bad me/cfs day.

I'm continuing to experience improvements. For the past two years any improvement I've had was short lived and limited to a day or so. This run has lasted twelve days now. I'm a bit more tired today than I have been but I've also been under a lot of stress which is never good for us.

So, I decided to seek out therapy. I figure it can help me continue to make the necessary life style changes as well as help me develop tools to be true to myself. I also want to come home to myself.

I spent all day last Thursday researching therapists who were listed on my insurance plan. I finally settled on one who sounded great, had a great web page, and good training. I had first session on Monday. Over the phone she told me she had worked with cfs patients in the past. You certainly couldn't tell during our session. She actually psychologized this illness! She actually said I developed my symptoms due to psychological reasons!!!! I could not believe it. She was surprised I wasn't working. As if I could. In hindsight I realize she has no knowledge of this illness and thinks its just fatigue. I tried my best to educate her but I was just a patient and she clearly was having none of it. I will not do therapy with her. At some point I want to put together a packet of information to give to doctor's, therapist, or anyone else so they can become educated on this. I can easily go off on a rant here. The other part that is a bummer is I only have 20 sessions per year and I used one up on her. It was a good lesson though. Next time I will ask the potential therapist how they view cfs.

Tomorrow I have my Tilt Table Test. I'm a little nervous,mostly because I don't want to crash afterwards. I've really been enjoying these improvements.

My last day of Valcyte will be July 19th. I can't believe I have only 19 days left. My doctor will put me on a new immune modulator once I finish Valcyte. Hopefully its out by now.

I haven't been able to watch the rest of the Gupta Retraining DVD's because the computer that has the DVD player is not working at all. I'm disappointed about it because the stuff I've learned so far has been helpful. It's a nice adjunct to Valcyte and the Methylation Protocol.

Has anyone else had the Tilt Table Test? If so is there anything you recommend for recovering afterwards?

Peace and Wellness to All

A New Phase and A Blog Change

I'm feeling a bit stronger than I have for a couple years which is great news. I have a long, long ways to go but I'm feeling a little encouraged. I feel very protective of this emerging strength.

I'm finding that I'm also rather terrified of what's ahead of me because I know what its going to look like. It's interesting to be feeling a little better because I'm realizing how alone I am and how absolutely not at home with myself I am. I also realize the absolute need to makes changes in my life that will support my emerging strength, enhance my sense of spirituality, and feel a sense of peace. Because of how sick I've been and prior to that all my efforts went towards completing my PhD on top of working full-time etc...I neglected friendships and let my support system go. I don't know how to go about making new friends when I have such limitations regarding energy etc...but find that I desperately need to establish a support system.

I'm also re-evaluating every aspect of my life. I realize that I have little tolerance for certain behaviors and little physical tolerance for a certain level of stress. I have no patience for people who have zero insight, refuse to accept responsibility for their behavior, are blaming, and have no desire to understand or take into account the fact that I'm this ill.

I feel like I have changed as a result of this illness and certain things that used to be okay with me no longer are. I can't pretend that certain things don't bother me, I no longer want to sacrifice my own values just to maintain certain relationships. I have reconnected with my desire to live, reconnect with a sense of soul and being in the world that I used to have but got drained out of me because of a certain level of stress that comes with hearing over and over again that my perceptions and/or aren't valid, aren't accurate or get corrected and minimized.

Anyway, due to the next phase of my reflections and journey as well as other reasons, I'm going to limit who has access to this blog. I want to make sure I stay in contact with the people who read my blog regularly so I'm assuming that if your on my list of followers you'll still have access to my blog?

I wanted to provide some warning about the blog change and my reasons for doing so. So if you are wanting to have access to my blog I guess it might be a good idea to add your name to the followers list (unless anyone knows differently and can tell me this works).

I just tried making this blog private but can't figure out how to do it. Does anybody know?

Peace and Health to All

Living The Surreal Life

I'm a bit at a loss for words as I once again digest the consequences of having an illness like this. I feel a certain responsibility to be very honest in this blog as well as trying to educate people on what its like to have an illness like this.

I don't think its possible to really grasp how ill some of us are because when we are out in public or having social visits, we are putting on our best face. So what people see is that I'm smiling, interacting, laughing, and I don't look sick. What isn't seen is how much I'm struggling with trying to find words to express myself or how long it takes to process things that are happening or how long it took to get ready that morning, or how tired and woozy I might be feeling and sometimes, how I'm simply trying to prevent myself from passing out. What people never see is what occurs when they leave.I'm flat on my back feeling profoundly fatigued, struggling cognitively, and frightened I won't come back out of it.

I have a lot of pride. I used to have a lot of pride about my independence, my intelligence, etc...I'm recognizing how much shame I have about being this sick. It is having a profound effect on the way I interact with everyone and I don't know what to do about it. I try to hide every bit of evidence of illness from people. This in and of itself takes energy.

I don't mean to sound whiny when I talk about these things. I'm simply stating the facts of my experience.

I think I expect people who knew me when I was well to reject me because I'm sick. I didn't have the highest level of confidence when I got sick and finding myself completely disabled has altered my sense of myself in the world. It has gone from a place that I enjoy and freely explored to a place that has to be navigated. Driving used to be no problem. Now I don't drive on the freeway and I try to find routes that don't have long stoplights. I can't stand in long lines because I get woozy. I have to limit the number of times I bend down to pick something up because it increase the dysautonomia symptoms.

Today I'm digesting some upsetting things that occurred over the weekend. As I'm doing that I'm also having to continue to work on gathering data for my ssdi appeal. As I process my changed sense of self and try to regain a sense of balance and centeredness I have to tie up the loose ends of my old life as if I'm making the final arrangements after someone has died. That's the way it feels. And the grief too is very private and though less intense now than a few months ago, still has its fingers on my soul.

That said, I have noticed some improvements in the past 4 days. Finally, something to show for the 5 months I've been on Valcyte. I'm encouraged by the improvements. But overdid it and am now paying for it with a crash. I was able to go out and do a couple things each day for 4 days. For the first time in almost two years I went to a musical event celebrating the summer solstice. I wasn't there for very long but I did it. And I was by myself. It took place very close to where I live which helped but I got to hear some music and actually be out of the apt for about 30 minutes.

Yesterday I went to my cardiologists appt at a hospital about 20 minutes away. The appointment was over an hour, it was a warm day, and I was emotionally upset. Since it was at the hospital I had to find parking which ended up being a very long block away. I made it through the appointment without passing out. The cardiologist had to keep redirecting me because I couldn't quite answer his questions directly (which was embarrassing). He was kind about it though. I think he could tell that something wasn't quite right. All of these things would have made it very difficult to drive myself home but I was able to drive home quite easily and, stop at a store to try to find applesauce.

The cardiologist agrees that it is likely I have the form of dysautonomia-postural orthostatic tachycardia syndrome so he ordered the Tilt Table Test for July 2nd. My sister will take me to the appointment thank goodness. The doctor said I needed to have someone drive me home after the test. He explained the test to me. I didn't realize how long it is. For anyone who is interested this is what happens: they lie you flat for 40 minutes to get a baseline read for heart rate, blood pressure, etc...Then they tilt the bed up as if you are standing but you are strapped in so you can't move. You stay "tilted" until you faint or there is a significant change in heart rate, blood pressure, etc...If this doesn't occur within 40 minutes they return you to the flat position and an intravenous infusion of isoproternol (Trade name = Isuprel) is started. This medicine increases the HR and BP. This effect is similar to that produced by our own natural adrenaline release. As you may have gathered, the test is now simulating what happens when the sympathetic nervous system is stimulated and the "accelerator" is pressed. The tilt table is then raised back up to 80 degrees and the IV medication continued.

A stop clock in the room is used to keep track of time. If an abnormal result is not seen, the table is lowered and then raised back up after increasing the dose of the IV medicine. In patients with dysautonomia, the increase in HR and BP is usually sufficient to cause "panic in the back seat driver" (parasympathetic nervous system). When this happens, the HR, BP or both drop suddenly and dramatically as the parasympathetic system "slams the brake pedal.". The patient gets dizzy and passes out. Thus, TTT succeeds in simulating a real life situation and establishes the cause of recurrent black out spells. With the above changes, the test is considered positive. The IV medicine is immediately stopped and the patient returned to the flat or supine position. Within a few seconds, the patient regains consciousness and both the HR and BP return to normal. The patient is observed for 10 to 20 minutes and then disconnected from the equipment.

I've been dreading this test for the past year. It feels awful to faint and I've been afraid that the episode will further increase my fear of fainting out in public because it might really happen now that I know I have dysautonomia (if I end up fainting during the test). Luckily I have the Amygdala Retraining Program to help with those fears and, there is treatment for dysautomonia. There is no cure for it but there are medications that can help manage it.

I've written enough for now. I've got to find a way to better explain what living with this is like.

Too Many Meds

I'm laying here listening to my cousin's music. I think his music is really good and I don't say that because he's my cousin but because its just really good. He's going to be playing in San Jose next Thursday. I wish I could go but this stupid illness...

The past couple days I've been feeling well, "not right" is all I can think of to describe it-like something isn't right neurologically maybe. I've also been getting anxiety spikes and the depression came roaring back. I think maybe the depression is a combination of many things-a byproduct of the toxins, having a chronic illness, all the uncertainty the illness brings, Valcyte, and a sense of profound grief at having lost what was my life.

I realized after I posted Tuesday that I am on too many medications. I checked all of them in an online drug interaction checker and found that they all can interact negatively with each other. Surprisingly there were no drug interactions with Valcyte. I decided to stop the Amantadine and the Lamictal last night. Both can contribute to insomnia. Amantadine and Doxepine can cause anti cholinergic syndrome. Because none of the medications seem to be helping I'm going to slowly eliminate the rest of them. I want to get rid of the Doxepin as that can interact with just too many things. I'll find something else to use for sleep. I'll be done with Valcyte in 28 days thank goodness. It feels good to take some action regarding the medications. It can't be good for my body to be on that many meds.

I woke up today feeling extra exhausted and weak but I don't feel as bad as I have the past couple days. Weds I got up from the couch and within three steps thought I was going to pass out. Luckily I made it back to the couch but it frightened me. The way I've felt the past couple days has also frightened me. I've been having bouts of pretty bad stomach pain so I guess I'm developing an ulcer. Also, the headache I thought was gone came back. I've got to find a local doctor.

I finally got referred to the cardiologist. That office (the cardiologist) worked very hard getting the nurse to follow through with multiple phone calls and apparently some heavy confrontation. I think they raised some heck at my doctor's office. Anyway, the cardiologists are booked out until August but they consider my situation to be urgent to I have an appointment on June 22 with an actual cardiologist for one hour. I'm grateful to have the appointment. My last echocardiogram and 24 hour holtor monitor was done by a technician and computer. I never met with a cardiologist to go over my symptoms. This time I get to meet a cardiologist.

I found a conference I want to attend in San Francisco. It's in one year and I plan on being well enough to attend. Its going to be about Carl Jung's never before published Redbook which contains his later theories. I can't wait. I was doing a little reading on dreams today and was able to feel that same sense of passion and fascination I have for this subject especially the way Jung approaches dreams.

I desperately need some good sleep-something I haven't had in a couple of weeks now. My downstairs neighbor for some reason stomps through the apartment and it feels like somene is pounding on the walls. It is quite jarring to my nervous system. Even though I wear earplugs I've been woken up for the past three days with her stomping. I don't understand how someone can walk so loudly. I got so frustrated yesterday that I got up and did some stomping myself. I found myself following the sound of her stomping through the apt matching her stomps with mine. Mature, huh? It was satisfying and, I found the secret to her stomping. You walk really forcefully leading with your heel. I can't ask her to walk differently but I can stomp with her. They are conscientious about sound which I'm grateful for but the stomping is really difficult for me to deal with sometimes.

Improvements

I'm now four months and almost three weeks into Valcyte, nine months into the Simplified Methylation Protocol, one week on lamictal, and one day doing the Amygdala Retraining.

I've been noticing some improvements, small, but noticeable. I'm able to sit up more hours during the day. I find I'm not automatically lying down which is what I used to do. My crashes are lasting as long. The swollen lymph node on the back of my neck has decreased considerably. My stamina is a tiny bit better. The muscle pain is, for the most part, gone as is the tendon pain I was having. I haven't had a really bad headache in a few weeks.

My remaining symptoms seem to be consistent with dysautonomia as well as problems with the HPA axis. These two problems are biggies though and quite disabling so I'm anxious to find treatment for them. I'm already on 5mg of hydrocortisone to address the hypoadrenia but its not doing the trick. I still have a dark line along the front of my neck. I still have tachycardia, dizzy spells, and fatigue.

Today I woke up feeling bad physically and emotionally. I was dreading the day. I did the first session of the Amygdala Retraining. It helped in a couple ways. First doing the exercise shifted my thinking from negative thoughts to more positive ones and it must have calmed my nervous system down a little bit. I was overdo for my blood draw by about a week. This morning I thought "there's no way I'll be able to get out to the lab" but after listening to the DVD and doing the exercise I noticed I had 30 minutes to get to the lab before it closed. I got my stuff together, put my shoes on and left. It was fairly easy. I actually left the house rather spontaneously rather than trying to figure out if I was well enough to go out. I thought back to four months ago when I went for my first blood draw-I was woozy at every stoplight, and woozy in the waiting area. What a difference between what happened today and how I was four months ago.

I have a long way to go. I feel like I'm in a complete restructuring process from my body to my entire mind and way of looking at things.

Its still not easy and the depression lingers but I feel very grateful for what I have in my life. I'm reconnecting with extended family that I'd lost touch with and that feels wonderful.

It takes discipline, patience, courage, and faith to have improvements.

I've been listening to Jack Kornfield "A Path With Heart" about meditation and find it helpful. I think until my mind is in a better place I need to keep it distracted and feed it good, positive things. I just remembered something from my post-doc fellowship. With depression they've found that a part of the brain actually shrinks in size. Also, research has shown that the amygdala is very involved in anxiety.

I'm on a slew of medications which is concering but hopefully I'll be able to reduce them at some point. This is my current treatment:

Valcyte 450mg twice daily to treat HHV 6 and EBV
Amantadine 100mg-to increase dopamine levels
Hydrocortisone 5mg-10mg for hypoadrenia
Armour Thyroid 30(?)mg
Gabapentin 300mg at night for sleep
Klonopin 1mg at night for sleep
Doxepine (liquid) 20 drops for sleep
Melatonin for sleep
Methylation Supplements: 1/4 Folapro, 1/4 Intrinsi B12, Perque B12, Neurological Vitamin, Phosphatidylserine Complex
High Quality Protein Powder
2000mg Buffered Vitamin C
Magnesium Malate
CoQ10 200mg
Liquid B Vitamins

Can I Get a Referral to a Cardiologist Please?!!

It's the latest saga of my cfs journey. Ten days ago I spoke with my doctor who agreed I needed to see a cardiologist to get, among other tests, a tilt table test so we can determine if there are any changes to my heart and whether I have dysautonomia or POTS (a great website for POTS is http://www.dinet.org).

Because this doctor isn't located in the Bay Area he asked me to look up cardiologists who do this sort of testing and email his nurse. Simple. At least one would think it would be simple. I found a cardiologist, asked what they need in terms of the referral and then sent an email to the nurse with detailed instructions on what they needed.

A week later I called the cardiologist's office only to discover the referral was never faxed to them. I emailed the nurse again with the instructions to make it easy as I know the nurse is very busy. I got an email back saying the referral was faxed that day.

The next morning I spoke with someone at the cardiologists office because the referral packet was incomplete. She was very nice, very helpful and upon hearing my symptoms agreed I needed to be seen and once they get the information from my doctor's office would schedule an appointment asap. She said the doctor's are extremely busy and booked out until August but they would get me in sooner but they needed the information from my doctor's office. We both agreed to contact the nurse. Late that afternoon I received an email from the nurse saying the referral was refaxed with the correct information.

Today I got a call from the cardiologist's office just to see how I was doing! I thought that was so nice. They were checking up on me to see if I was okay. It turns out my doctor's office still hadn't faxed the correct information!!! I tried calling but they don't answer phones on Monday's after 12 so I had to send another email.

I've been patient with having to remind said nurse about calling the pharmacy to fill prescriptions, etc...And I've been very patient. But when it comes to my heart its not okay for this sort of nonsense to go on. I have chest pain,tachycardia, light headedness, palpitations, and my left foot turns a dusky color when I sit.

I've read that people with these heart issues find they resolve once they've been on Valcyte for about 4 months but mine aren't so I want to find out why.

One thing is clear though. I need to find a local doctor. I wish Dr. Kliman were still alive. He would have been right on top of this.

Yesterday I was able to get out of the house for a few hours. We did some errands including a local Crate and Barrel Outlet. I took advantage of the couches that were for sale. I kept laying down to recharge. Luckily the sales associates thought I was just trying out the couches....But I'm paying for my day yesterday with a bad crash today.