Sunday, November 15, 2009

Struggling

It feels like all the improvements I've made have vanished. I've been practically bedbound for the past week. I've had a lot of stressors the past couple weeks and still have not recovered from the intense round of antibiotics to treat the staph infection. As Murphy's law would have it the infection started to come back late last week prompting a return to the podiatrist. The podiatrist noticed the big toenail on my other foot is starting to get ingrown. Because of my history of developing staph infections quickly he said "we need to pre-empt this one" so I'll be having minor surgery to remove part of my toenails on both toes again. I'll have the surgery on November 30th almost 1 year to the day that I had the last toe surgeries. It's quite discouraging having to go through this again but I can't afford to risk yet another staph infection.

One week ago I was in bed with a mild case of vertigo. I've been having little episodes ever since. Plus at times I feel on the verge of having some sort of seizure. It's a strange feeling. I feel like if I let go I'm going to go into full on vertigo or start having seizures. Both frighten me.

I'm continuing to lose weight. Luckily I had gained a bunch of weight-probably 35 pounds. I needed to gain 20 of those pounds. I've probably lost almost 20 pounds now. I don't have much of an appetite so I'm having to force myself to eat. I feel nauseated most of the time but luckily its rather mild.

I don't know what to do. I can feel Eeyore sitting on my shoulder telling me "what's the point of pinning my tail back on for it will just fall off again." I need to speak with my ME/CFS doctor but it costs a lot of money. Until I get approved for SSDI I'm in a tight spot.

So I'm feeling fairly weepy. I don't know how people who've had this disease for a long time hang in there. I hope I can hang on. Dr. Nancy Klimas at the end of the following video that "now is the time not to give up hope":

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

For awhile I hung on to those words but with the current decline in my health I'm finding it difficult to hang on to hope. I'm frightened of what's ahead. I'm scared about possibly having a retrovirus like XMRV. Mainly I'm frightened because I'm developing new symptoms and I have no idea what to do.

I've decided to stop the LDN for now just in case that set something in motion. I doubt it but just in case. I think all the stress of late has done a number on my body. My main complaint has to do with my brain. It just doesn't feel well-almost like its swollen somehow. There's the headaches, the sound sensitivity, the smell sensitivity. I'm tired of it. I feel trapped in it.

I'm trying to find my way back to a sense of peace but need new tools. The ones I have aren't working right now. I long for a sense of community but maybe I'll never have that again.

I was doing some thinking about when I got sick. The most serious and debilitating symptoms showed up in 2007 but in 2005 I did acupuncture. The acupuncurist had me do a 24 hour saliva test for adrenal functioning and when the results came back he said to me "I'm surprised you're even functioning." My adrenals were shot in 2005 but I didn't take the test seriously. I was so engaged in writing my dissertation, working, etc...that I didn't have time to not function. It has made me wonder if I've been sick longer than 2 years. Supposedly XMRV likes cortisol so high stress causes it to replicate.

I'm getting dizzy so will have to abruptly stop here. I just wanted to give a little update. If anyone has any suggestions feel free to suggest.... :  )

Oh, The Whittemore Peterson Institute has the questionnaire up on their website. Anyone in the world can take it. I would encourage everyone to fill it out as all and any information is useful. Here's the link. Scroll down near the bottom of the page and you will see it.

16 comments:

  1. Terri,

    I'm so so sorry that you're struggling right now. So many things have happened to you at the same time that it's no surprise you feel overwhelmed. I have a few suggestions. I think it's a good thing that you've stopped the LDN for now. It doesn't mean that it won't work for you (it definitely does for some people with CFS) but there are some people who can't tolerate it and I'm one of them. I started it up three times because I really wanted it to work for me but I got some strange symptoms on it -- dizziness, heart-pounding -- and it also disrupted my sleep even if I took it during the daytime. This reaction is unusual (I know because I posted many time to the LDN Yahoo group about it) so I wouldn't want to discourage anyone from trying it. But it just could be that you're one of the people who, like me, can't tolerate it.

    Second, some of what you may be feeling could well be side effects from the antibiotic. It takes a powerful antibiotic to fight staph infection and I think it's common to experience side effects from the medicine.

    Lastly, if stopping the LDN and taking into account the listed side effects of the antibiotic don't help, I'd try to see your CFS doctor to talk about these new symptoms.

    These are just suggestions. Feel free to disregard them if they don't seem "right" to you.

    I hope that you begin to feel better soon. I'll be thinking of you.

    Toni

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  2. Hi Terri,

    I don't have any suggestions...but did want to say how sorry I am you are struggling with all of this. You have been through so much. You're in my prayers and thoughts.

    (((hugs)))

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  3. I agree about the symptoms and the antibiotic. Even just the infection can cause such a drain that you can develop more symptoms. The antibiotic affects the immune system and then things cascade. It's so hard to get through the relapses and to seem to go backwards instead of getting better, but I think is is pretty normal for the course. Do you (can you) take sea salt in water during the early part of the day? It helps me with lymph movement along with stretching a bit. You have a lot of "stuff" to get flushed out while the antibiotic works. Drinking lots of water doesn't really help me unless I use the sea salt with it to help as an electrolyte. Simple, relatively inexpensive if you have sea salt on hand, and won't hurt you because it is not high sodium like table salt is. I agree with stopping the LDN right now, also. I find the brain symptoms (and I include your low mood in that) can be attributed to toxins not circulating in the body instead of getting flushed out so that's why I suggested working on the lymph flow. Things WILL change. Hang on.

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  4. I think my adrenals were shot some ten years before I finally collapsed. Like you I didn't heed the warning signs.

    I'm not sure if this helps, but health anxiety goes hand in hand with this disease. Anxiety can be a serious illness in itself and causes all sorts of symptoms. I'm no doctor and it would be good to get checked out. However, I know when I get super anxious I focus on my body.

    What helps with me is not projecting into the future and just taking it one day at a time. None of us know what tomorrow will bring. When it gets too bad I chop the day into hours, and just get through the next hour.

    I promise you, it will get better. Let go, and trust. Gentle hugs.

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  5. Hang in there, Terri. I know how hard it is. You are in my thoughts!

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  6. Sending lots of prayers, good thoughts and (((hugs)))

    Lori & Jessie

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  7. I am so sorry you are going through so much right now. You are in my thoughts and prayers, Terri during this time of intensified health problems.It is so hard to figure it all out and know what is what, but slowly you will! Maybe keeping notes on symptoms..time of day, intensity, what you are taking, etc.. Antibiotics affect us so much ~ any med does...I know you took abx for Lyme ~ is it the same kind of symptoms you had then? Toxins are hard to release from the body...do you need to take something to help release them?
    I really don't feel I have many ideas for you ~ your knowledge is so extensive ~ but please know that you remain in my thoughts and I am lifting prayers for wisdom and healing for you.
    Gentle hugs

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  8. Terri
    It can be so scary during the times when symptoms get worse or new ones appear. Hell, I've had this for 19 years and I still get scared.

    All I can offer by way of feedback is that antibiotics ALWAYS make me dizzy, even ones that I could tolerate at the beginning. One always makes the room go in a half turn. If I need one I know I just have to wait it out and that sucks.

    This fall I've had more viruses in a row and more voice loss and limpness than in a number of years. I never know what causes the worse times. You WILL get through this. You will!

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  9. Like the others who have left such kind words, I too am sorry to read you are slipping so far into "the hole" [my name for it]. I do know that I do feel rotten when I have to take antibiotics and thus don't unless I have to. In reading your blog, I have noticed, but memory is not good so forgive if I am wrong here, you have been on one or another often in the past year so perhaps you have reached your saturation point with them and need to stop asap? just a thought you have probably already considered....

    I understand how you feel, this dreaded disease is so depressing and it adds to depression you already have by depleting so many chemicals in the brain and body...have you continued to do acupuncture? I see an MD here who is fabulous, also does acupuncture and treats CFS but he is also expensive...in my mind, my credit card with just have to do it and that's the end of worrying over it....I have chosen to ignore the XMRV for now as there is nothing to be done other than that...no reliable treatment or test really so until there is , life goes on, la dee da...

    feel free to email me privately, it's on my blog, if you want my doc's phone or any details...I am not too far from you so maybe he will work for you, if you haven't already seen him? we all seem to see so many looking for the right one...I will keep you in my thoughts, hoping for you a brighter day soon! the dark moon and the cold may also be triggering some of the worsening of symptoms, at least they do for me.

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  11. Hi Terri--sending cyber-hugs your way. This disease can just be brutal...and I'm so sorry you are in the midst of it.

    Wanted to share that I too get headaches in which my brain feels swollen--as if it will explode or implode. I find these headaches just about unbearable. Mine our triggered by low barometric pressure as well as over doing it cognitively. Vicodin is the only medicine that relieves the pain, and it took me years to discover this. Through those years, before I could find any help for the pain, I would fill the sink or tub with ice and put my head in it hoping it would give relief--it did feel good while my head was freezing...the freezing overtook the pain for a bit...

    It is tough when the stress of life sits on top of the stress of illness...and sends our health into a nose dive...

    I've had ME/CFS for twenty years--mine has been progressive and sometimes Terry I didn't know how I was going to live it or if I could. Yet, with time and rest and life letting up a bit on stress, and love from my family and friends thrown in...function, comfort, spirits lift again. (Now, having cyber-friends sure helps)

    Sending you warm, gentle, feel as comfortable as possible, stress let up, vibes.

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  12. Kerry,
    I've never heard anyone describe those head pressures before, but I get them, too, and often with barometric changes. Mine don't become headaches, but feel like a vice is closing around my head. I can't tolerate and sound or light and have to just curl up and be still until it passes.

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  13. Oh, Terri! I'm so sorry to hear that you are struggling so much. Keep hanging on. Sending you healthy thoughts...

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  14. So sorry to hear you are getting worse. This damned illness is so unpredictable... I've had 3 major relapses come on from stress, but other times I've had stress and no relapse. Ugh. We all live with the terrible symptoms and with the traumatic stress of unpredictability, a crazy roller coaster of hopes and disappointments. I don't know how we do it... NO ONE likes it. It just goes on and on for years, some years better than others, and we find the strength to cope.

    I turned to spiritual practices we have helped me keep centered and even be able to feel 'good' during my worst periods. I work with my mind and try to reign it in when it starts galloping down the path of self-pity and despair. Otherwise, I'd always be in mourning for the life I lost.

    You'll find your way. Hopefully, we are on the cusp of finding a way out, if XMRV turns out to be the causative agent. Hugs to you, Terri, as you move forward.

    BTW, I get the same from all the e-mycin family of antibiotics. Fill yourself up with probiotics. It takes me 2-3 months to come back to 'normal'.

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  15. Terri,

    I've been reading your blog with great admiration for the bravery you've shown in dealing with this illness. I've had CFS since 1993 and have had periods of remission where I could actually function. But for the last 2 years I've been in a downward spiral, what someone so aptly called "the hole," that I often consider ending it all. If it weren't for the fact it would destroy my mother and husband I might give in. Last year, after 3 years of missed diagnosis, I had an adrenal gland removed due to a tumor that was affecting the mineral balance in my body. Six months before that I had an agonizing kidney stone that sent me to the emergency room. For the past few months I've had unrelenting stomach pain/upset and have had CTscans, endoscopies, and every test known to man and no diagnosis. Meanwhile I keep losing weight, sleep poorly and have overwhelming, crushing fatigue. I guess I'm relating all of this because I have great empathy for your plight and know what it feels like to suffer from this illness. It is a great struggle but I truly believe if some day we can find relief the suffering will have taught us the invaluable lessons of cherishing our health, of having empathy for those who suffer and to love yourself unconditionally. Wishing you peace on this day of Thanksgiving.

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  16. I'm concerned about you, Terri, and sending much love.

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