Sunday, March 7, 2010

David and Goliath

I feel like David going up against several "Goliaths" at once. First I want to apologize for being absent from the blogging world for so long. I haven't been able to read blogs or comment on my the blogs I love to read.

There is a lot going on not to mention the severe relapse I've been in since late October. This is my first prolonged relapse and I have to admit its starting to frighten me that I'm not coming out of it. I'm not sure what else I can to stop myself from being pretty much bedbound for 22 hours of the day. I've been trying to do some reading when I can to try to understand what I can do.

My ALJ hearing is coming up. For my friends in the UK this is a hearing that occurs after being appealing two denials for my SSDI benefits. I've been in this process for the past two years. I'm very stressed out about it because I've had some bad luck in that both my primary treating physicians died within one year of another. So I'm having to rely solely on my ME/CFS doctor's reports. I do have an attorney but I'm also trying to do research and prepare for the hearing on my own.

So it is with these two things in mind that I went to see my ME/CFS doctor two weeks ago. One was in the hopes that he would be able to help me figure out how to get out of this relapse and the other was that I needed two more things from him to help me with my SSDI case. I needed him to fill out two more questions that my attorney had prepared. The judge in my case is brand new and a vocational expert will be there so my attorney thought it would be a good idea for my doctor to answer these two simple questions. I also needed to get his (my doctor) curriculum vitae.

I was unprepared and a bit shocked at what occurred during my appointment. First a little background. Back in December I had a heart to heart with my doctor because I felt there were some big problems that had happened and I needed to know if he still wanted to treat me (I've talked about the problems at various times in my blog). One of them is the length of time it was taking to get him to fill out any paperwork. He was late getting one ssdi report to my attorney which caused me to miss the deadline. Had I not had an attorney that had to file some paperwork to resolve it I would have had to start over from the beginning. He also filled out my student loan deferment late causing me to be late on my student loans (he knew both deadlines and took over 2 months to fill out the paperwork). It was getting to the point where the "care" I was getting from him was sloppy-medication refills were taking as long as 2 weeks etc...Abnormal labs were overlooked, etc...

So during our heart to heart he said he was still interested in treating me etc....

I was driven to my appointment which is over an hour away. By the time I got there I was in bad shape. He could see how bad I was doing and how bad I was struggling cognitively. He has never seen me as bad off as I was-the weight loss, pale face with dark circles under my eyes, I couldn't get a complete sentence out, etc....I told him I was having increased episodes of feeling faint and one night got up to go to the bathroom and ended up needing to lay down on the kitchen floor so I wouldn't pass out. I'm having a lot of difficulty tolerating being in a passenger in a car for some reason.

He told me that there was nothing else he could do and the only thing that would help were stem cells. Now I expect to hear that from a regular mainstream doctor but I didn't expect that from him. He also refused to order more tests (like EBV) for my SSDI hearing claiming I "had enough evidence and all I needed to do was tell the judge that I would appeal his decision" if he turned me down. He did not fill out the form I gave him and now 2 weeks later and one month before my hearing I still don't have the form or his CV. My attorney needs both asap so he can submit them to the judge prior to the hearing.

My emails have not been replied to. At all.

The day after my appointment I fell into a deep, despairing depression. Had I the means I would have taken my life that day. I know this isn't what people want to hear but it's the truth and a grim reality we all face. The suicide rate for people with this disease is way too high. And one thing I know for sure is that I do not want to live the rest of my life like this. I'm just not strong enough.

All I could think about was that I would never get any better and that there was no help at all anymore-that I would be stuck in this relapsed state for the rest of my life. I felt like any hope I had was taken away with his comment "there is nothing more I can do." Not only did he say that but he said I might have improvement.

Then there is the preparation involved with SSDI appeals. It is such a crazy and demeaning process. My family wrote letters describing the cognitive decline they have witnessed since I became ill. It was as painful for them to write as it was for me to read. It's bad enough that I've lost the life I had but to lose my mind as well....I had to keep reminding myself that this isn't how they see me and that this isn't all of who I am. It was painful for them to put this down on paper. I had a really good mind. I used to be really, really smart...

My closest friend, who is also bedbound with ME and lyme and who I can share everything with even though we have never met, did some research online trying to find my doctor's CV. She didn't find that but she did find some disturbing information about him. It has been troubling me and I am glad that the disability system is so overwhelmed they don't have time to research doctor's. If so I would lose my case.

I always said that if a doctor told me there was nothing more they can do then I would change doctor's which is exactly what I'm going to do. He seems burned out and going through the motions. I've heard this from other patients also.

He told me that Famvir was "useless" (I was trying to find out if Famvir is bad for gastritis) and that he just isn't on board about the XMRV findings. I was angry at him for his arrogance. People have had improvement from Famvir and if he thinks its so useless why did he prescribe it for me just 3 months ago. I also don't agree with his attitude regarding XMRV. I think it is a very significant finding. It became clear to me during the appointment how unaware he is of the current literature on ME/CFS. He's too busy to keep abreast of these things he claims.

I am continuing to do spiritual reading but I think I'm in such a bad relapse and having such trouble cognitively that it doesn't feel like its helping. It might be one of those things that takes time. I just hope there is a God or Higher Power.

These are the reasons I've withdrawn from most everything. I'm just struggling to keep hanging on to a sliver of hope.

I'm sorry this is such a down post. I'm truly at my wit's end...

If anyone has been in a dark place and was able to turn it around by deepening your sense of spirituality, I would sure love to hear how you did this and how long it took. I feel like I'm praying all the time with just an empty silence to greet me...


Lee Lee said...

Really sorry to hear just how rotten you are feeling :(
I have 2 comments to make ...

1. Dont hesitate, change your Dr. My partner was ill and had a Dr who initially seemed like the right guy but his interest diminished quickly and he just wouldn't listen or take appropriate action. The short story is that my partner died because his Dr was lazy and disinterested. I spent 5 years taking legal action against the Dr, which brings m eto point 2.

2. After the mess of my partners death an dthe legal battle I totally melted down into the worst depression I could have imagined. The thing that allowed me to climb out of that hole was a change in thinking. I was holding onto massive anger and sadness etc etc and someone said to me 'you cannot change what has happened but you can CHOOSE how you react to it'. That was correct, it had been a huge loss but the rest of the world was still turning and I needed to get on board. I realised that I should only worry about things that I could actually change, such as my mood and health for TODAY. I now just live for today and do what I can to prepare for tomorrow. When I am faced with something now that would previously have sent me into depression I look at it and see if it's something I can change and if it's not then I just accept it and incorporate it into my life TODAY.

This illness is an enormous test, just do what you can and go along with the rest.

Renee said...

Dear Terri
It breaks my heart to hear what you are going through. To be so ill is so have this wretched disease robbing you of so much of who you are...I am so very sorry. There have been times that I have been bedridden and unable to shower alone, get meals, etc. for months at a time. It is hard. Beyond hard to experience what you are going through. I cannot address the disability ~ I have never even tried and with Joel's salary we have gotten by. As far as spirituality ~ I can only address my own faith. It has been a part of my life since I was 12 and at times when I was younger adult it did wax and wane...but in the past 25 yrs it has sustained me. I believe God is always there even when we don't feel him near. I can only share what I do to get through the darkness...I read...I read inspirational books that give me the hope I may not feel at the time. I read devotionals,listen to books on tape, do anything I can to inject myself with hope. If it is difficult to read, maybe books on tape. I don't know how you feel about Satan, but I often as of late have very fearful thoughts (due to a new health problem) and I say outloud when negative thinking comes into my mind or fear reigns, "Satan, I will not let these thoughts control me. You need to leave In Jesus name. Lord, fill this space with your peace."
I think your mind is being affected by this illness and you need to not make any decisions or believe what one doctor says about not being able to help you anymore when you are so sick and broken in body and spirit. Let others pray for you, Terri. Let others soothe you in your time of need. I will put you on my prayer list and pray for you morning and night. Don't give up hope Terri. We need you. D. needs you. The world needs you. You are God's masterpeice and even if it is hard to understand why he has allowed such suffering, He will carry you through it one moment at a time. I had someone tell me today...we eat an elephant one bite at a time. Concentrate on the one bite.
I believe with all my heart that God loves you, you are His child, and He has a plan for your life...
Proverbs 3:5,6 has been strengthening me this week. Repeat this or any verse that brings you comfort over and over my friend.
Trust in the Lord with all your heart and lean not on your own understanding, In all your ways acknowledge Him and He will make your paths straight. In other words he will show you the way through this dark time in your life. In isaiah we are told God has a firm grip on us. He will not let go. You may not feel it right now, but He is there with you. He loves you and so do we ~ your blogger friends. I think it is important to stay in touch...with those who get it. Can D. read our posts to you? Would it help to write letters to you? Whatever I can do to help, Terri....
Today I am wrapping you in prayer.
And sending hugs across this vast country to you.....

linda said...

terri, i am sorry to read all this, that life and this f^&&*#king illness is taking so much of your life away...i do know exactly what you are talking about and realize it is so very difficult to deal with...not knowing anything much about your life i cannot address it but can say that for me, practicing meditation, even if it's just listening to my breathing in and out, in and out, helps me in the long, it does not make it all go away, not at all, but it does help me calm myself, clear my cobwebs and lessen my pain...yes, you heard that right, it lessens my pain...i have been practicing a long time and perhaps this illness is i suggest you begin with your breath...just try to do that, let thoughts float by, relax as much as you can, be comfortable even tho it might be difficult, just be as at ease as you can, and practice that...i find if i go looking for god, i come up empty often, perhaps because i am often so angry at what is happening to i start with that and forgiveness of myself, for myself...the rest will take care of itself ... you are in my thoughts and i have been wondering how you are..take care, my dear. the doctor issue seems to be going around, btw.

linda said...

terri, i also meant to say, brain fog--you know, that keeping in touch however you can is important and this blog is one way for you to reach out and have those who read your words hear you, being heard is so very important, feeling validated...this is one way, perhaps you have others....don't give up, there is nothing to go to from is where you are right now for whatever reason, please reach out to others, it will help to ease your suffering.

dominique said...

Terri - I have had this same struggle with doctors in trying to get documentation for SSI as well as to get my loans forgiven.

The last doctor I had at the VA told me I would get the documentation I needed in 2 weeks but it took two months. I was livid! It was the first time I lost it and told the nurse I was very angry. Because of this doctor's ineptness, I was now going to have to start the whole process over for the fourth time.
Apparently the nurse told the doctor I was really upset and he felt bad and called me at home. He had me come in right away and did the paperwork in front of me, plus contacted the loan people to verify it was his fault. In the end, I discovered he still didn't fill out the paperwork right so my loans are in deferment for a year or so and if I am not better, then they will than be canceled.

It is hard enough dealing with this illness, but then to have to deal with the ineptness of doctors and the disability people is just over the top.

I, like Renee, have only made it through because of my faith. In addition, however, I had to find a way when I was in the midst of despair or severe fatigue/cognitive dysfunction to just get through it. For me, in those moments, I do whatever I have to to make it one more day. Sometimes it is as simple as saying over and over, 'there are new mercies in the morning.' Other times, I get people praying for me when I can't do it for myself.

The goal is to get through today, one step at a time. There is no magic rule on how to do that and we all do it a little different.

I think it is interesting that David didn't perceive Goliath as "too big" to conquer. How we can come to a point of not seeing CFIDS as this huge obstacle that we cannot find a way around is not an easy one. But maybe that is the answer.

I will keep you in my prayers. If you would like to talk, you can find me at, 4Walls and a View.

I pray that God will reach down and whisper words of encouragement, love, and wisdom in your ear even in this dark moment.

Joanne said...

I am so sorry to hear your recent struggles.
I too was in that dark place some years ago.Two things kept me going one that my children still rang for advice on their problems and my brain still fuctioned enough to help them so the effect of my death would have devastated them, not my husband he would have understood. The other thing was that a course of antibiotics had improved my symptoms and led my GP to suspect lyme disease so although treatment was controversial I knew the antibiotics were helping.

One thing I have learnt through reading about ME/CFS and Lyme is that doctors are a very mixed bunch, many know less about treatments than we do ourselves even when they take mega bucks for treating us. However some are dedicated to helping us but struggle to find the answers for our own particular cocktail of infections and problems.

I have long been interested in the possibility of stem cells helping but how do you know you have harvested health stem cells if you don't know what infections could be in them to look for?

I lost my faith many years ago and following these medical controversies as I do now would doubly loose my faith yet again but if it helps you then that is good for you.

An e mail to me from Ken Friedman says that I was one of the few and one of the lucky ones to have found a doctor open to Lyme Disease diagnosis and to have been treated successfully. He says that research shows 30% of ME/CFS patients have lyme but it is difficult getting doctors to properly check for that.

I guess you are well aware of the links with a friend with ME/CFS and Lyme but others reading this may not be.

Very best wishes that you are able to turn this all around at your hearing and then in your health.

Jo said...

Hi Terri, I read this last night and again this morning. Last week I was in a pretty bad place with depression. If I could have 'thought' myself dead I would have. The thought of maybe another twenty or thirty years of this twilight life was too much to bear. Well, it still is too much but, for whatever reason, I feel a bit more able to cope today.

It wasn't God that pulled me out of this, but other people. If there is a God I think she works through people. Being spiritually strong for me means being true in my communication, reaching out and listening well. Judging by the strength of support you get on your blog, by my criteria you are spiritually strong.

One of the triggers of this depression for me has been the arrival of renewal forms for both of my welfare benefits. It feels like torture to have to justify myself yet again in order to get my basic needs met. To have it going on for two years must be intolerable. The death of both your docs is a terrible thing for all concerned. Not your fault though.

Change your doctor, address the depression. Keep blogging. Oh, and don't kill yourself - please.

Pris said...

Terry, If you can at all, get another doctor. That may be too hard for you right at this moment but do as soon as you can.

And I was completely down, too. I thought about suicide. I can't really say what got me through since I'm not a religious person, but I am spiritual. During my worst days when the world was fuzz and I could do nothing I thought about POW's. I kept thinking of one who was locked in a box for 4 years. He despaired, then imagined playing a game of golf every day , one hole at the time, every swing. He knew he might never be released. He was. I kept telling myself if he could do it, I could. Many days it was the only thing that kept me going, that knowledge that a door can open even after interminable losses. The door to improvement finally opened to me.

Please hang in there!!!

Jo said...

Pris, your comment helped me too. Thanks :-)

Laurel said...

Terri -- So sorry to hear what you've been going through.

I, too, have been in a prolonged crash since September, and it is beyond discouraging. But please don't give up hope. There are people who have been in deep crashes for months and have come out the other side, and you will too. Plus, we are closer than ever to finding the answers, and I truly believe a targeted treatment is not far off. Things WILL get better in time. In the meantime, your life still has enormous value and purpose and meaning -- so please hang on.

As with Pris, I too have found comfort and strength in reading about POW's. I can't think of any book titles at the moment, but I'll try to pass them along if I do.

Hang in there!!!

Toni said...

Hi Terri. I'm sorry that so many terrible things are happening to you at once. Things will change...all you need is that one ray of sunshine coming though to give you hope. As I read your post, I honestly felt that there were parts of this book of mine that's going to be published that could help -- some of the simple exercises and practices I write about (many from the Buddhist tradition). I wanted so badly for you to see a couple of the chapters I have in mind. If you're interested, I could send you my draft versions (the ones I first sent to the publisher). Maybe they'd help. Let me know via a private email to me on Facebook, leaving me your email address.

People have written wonderful comments here. I hope they've communicated to you how much we care about you and want you as part of our community.


Shelli said...

I'm one of those people who don't know how I could do this without my faith.

My mother recently gave me a book for my birthday, "The Promise of Enough: Seven Principles of True Abundance" by Emily Freeman. It was a remarkable book, and just what I needed (I'm in the middle of a nasty relapse, too). Although it is by an LDS author, it is based on the story of the fishes and the loaves in the New Testament of the Bible, and I found the principles in it to be broad enough that you can adapt it to your own faith and spirituality.

The other thing that helps me is looking for the Lord's "tender mercies." I kind of think of them as love notes from home, you know, the kind your mom put in your lunchbox before a big test or when she knew you were having a rough time, just to let you know she believed in you and loved you no matter what you were going through. These are small things that seem like coincidence but really aren't -- like walking outside and finding your favorite flower in bloom, or having a friend call you and say, "I was just thinking about you," or hearing a particularly poignant song on the radio that you haven't heard for years. You can recognize them because they are little things that are meaningful only to you. And yes, I do believe that God works through other people.

I posted a video about tender mercies on my blog just a few days ago. Maybe it would be helpful.

Finally, I echo what Renee said. The world needs you. You are having an impact on people. By sharing your struggle, you make our burdens easier to shoulder. Let us do the same for you.

I hope you can feel the prayers that are coming your way today.

Annie said...

Terri, you are in my thoughts and I'm crossing my fingers for you.

I hit those dark places every month or so, and they are hard to get out of.

cfswarrior said...

Hi Lee-

I'm so sorry to hear about the loss of your partner and everything that transpired after that. It must have been devastating.

Thank you for your comments. Living in today is wise advice. What you wrote reminds me a bit of the Serenity Prayer. Accepting what I can't change and having the wisdom to know the difference.

Working on the negative thoughts is something I've been doing-they are so persisent!

I agree wholeheartedly about this illness being an enormous test.

Thanks again for taking the time to write what you did and for sharing your experience....It is quite helpful.

cfswarrior said...


Everytime I read your response it brings me to tears (everyone's response has brought me to tears there is such care in our community).

I think I need to spend more time with inspirational things. Reading is a bit difficult for me but listening to books on tape would be helpful

One thing that is so painful about this disease is the invisibility. I am grateful to you and others for "seeing" me.

You are so right about this disease affectiing my brain. I'm trying to figure out how to address that.

I too think it is important to stay in touch. You and others have helped me more than I can say over these past almost 2 years of blogging.

Yes-D. can and does read the comments and finds them comforting as well especially that I'm part of such a wonderful group of people.

Thank you for your wisdom and sharing and your prayers. It is hard to talk about these dark places but much harder to experience them.

Thank you so much....


cfswarrior said...

Hi Linda-

Thank you for reaching out to me. What you said was right on about the importance of being heard, seen, etc....I have missed that.

What sort of meditation do you practice? Reading your blog I've always had the sense that you have a spirituality that is grounding.

You touched on an important point and something I haven't written much about and that is the anger. I have been feeling angry that this happened and that things don't seem to be easing up.

I think focusing on my breath is something that I can do and just let the thoughts pass.

Interesting that you are having a similar experience with your doctor?

I need to give you me new email address....

Thanks for being there. It means a lot. And thanks for the times you have seen through what I've tried to say...

cfswarrior said...

Hi Dominique-

It is infuriating having to deal with a doctor's lack of response while also having to manage this illness etc...

Thank you for sharing your experience of being in this dark place. Your words are a comfort to me.

I like what you said too about doing what it takes to get through the day.

I'm trying to "downsize" this disease. It's a good question as to why it does seem like a Goliath. For me it seems to be due to the constant rotating of symptoms and then when the new symptoms come into play it all feels overwhelming. It would be easier if we had some answers from the medical profession or if we didn't have to deal with the stigma attached to this.

Thank you for your prayers and for sharing where to reach you.

cfswarrior said...

Hi Joann-

I agree with your statement about stem cells. It seems risky to do without knowing what infections are present especially when there might be a retrovirus involved.

I would love to find a doctor who will help me find out what my particular mix of infections etc... is so I can get treated. I have been asking my ME/CFS doctor to test me for lyme co-infections, mycoplasma, etc... and he has refused. I also think I need to be retested for lyme as my original test showed activity on 5 lyme specific bands but 3 were IND. I didn't have a positive response to antibiotics-either it was a herx or side effects but I didn't have any improvement. I was also living in a mold ridden apt at the time so it's hard to tell.

I agree with Ken Friedman about you being one of the lucky ones to get the proper treatment. I hope I can get lucky and find a doctor like that.

Thank you for sharing your experience and for educating people that lyme and co are extremely important to test for.

cfswarrior said...

Hi Jo-

Ugh-I can't believe you have to go through the justification process again in order to continue receiving benefits. It's outrageous the hoops we have to jump through. I'm sorry you have to deal with this again.

I do need to deal with this depression. I need to find a doctor who is willing to prescribe me an anti depressant. I finally came to that realization.

Thank you for calling me spiritually strong. I certainly don't feel it. I feel like I'm not coping with this disease well at all. I feel that all of you are spiritually strong and I draw strength from you and others.

Blogging is so helpful. I need to make sure that I keep writing and reading.

My brain power is dwindling. Thank you for your continued support, your wisdom, and your strength.

Hang in there Jo...

cfswarrior said...

Hi Pris-

Wow. How did you end up thinking of POW's? What a wonderful tool. Thank you.

I will be finding a new doctor asap. Once my hearing is over I'll be writing a letter of complaint about my current ME/CFS doctor. His boss needs to know what is happening.

You continue to be an inspiration to me and sometimes I go back and read the blog post about your book (the virtual book tour).

Thank you for being there and for your continued support and just getting this experience.

Daphne said...

... and you know, David did end up conquering Goliath, with a little stone. Little steps, little stones. You are very loved.

cfswarrior said...

Hi Laurel-

How nice to hear from you and see you back online. I'm sorry to hear about your relapse also. You are right in that it is beyond discouraging. I think since this is my first one I haven't yet developed that sense of trust and confidence that I'll come out of this so I appreciate your words.

I would be interested should you think of any books about POW's. I'll also do some research on amazon.

I'm really counting on WPI to give us answers. I hope that targeted treatments are here soon.

Thank you so much for taking the time to write a comment-something that isn't easy when in a bad relapse.

cfswarrior said...

Hi Toni-

I am so looking forward to reading your book. When will it be out? I'm going to send you my email address through facebook. I would love to read those chapters. That quote you left on my last post has stayed with me (the one by Stephen Levine).

The thought that people actually want me to be part of community brings me to tears. It is very moving and it feels good not to be judged for sharing these dark places.

Thank you for your support and being part of this community. I look forward to reading about your journey.

Should you ever want to have a virtual book tour like Pris did I would love to offer my blog as one of the hosts for it.

I'll also ask you if you have any doctor recommendations since I think you live about an hour away.

cfswarrior said...


Your post was another one that brought me to tears. I love your description of the love notes from home.

Last week I had a dream that I'd had enough and wanted to go "home" to be with my mom. I was asking my sister if she thought it was okay but I knew it was time for me to go there.

I'm going to look for the book you mentioned as well as watch video on your blog. I do think it would be helpful. Thank you for telling me about them.

Thank you also for saying the world needs me. It is hard to get my mind around that because I feel so useless and somewhat discarded by a society that puts so much worth on doing.

If you ever write a book you have a great title already "Letter's From Home" or something like that...

Thank you so much Shelli. I'm sorry that you are also in a relapse. I hope you recover from it as quickly as possible...

cfswarrior said...


Thank you for commenting. Yes-these dark places are difficult to get out of aren't they?

Thank you for your thoughts and for stopping by...

Jessica said...

Terri, I'm so sorry that you're up against so much! It's hard enough to deal with trials when you're healthy, but so much worse when you're sick. I read your post last night and have been thinking about you and wondering what I could say to encourage you. First, please don't ever give up!

Whenever I'm in one of those dark places, which seems to be often lately, I must turn to the Lord. The Bible says to cast all our cares upon Him because he cares for us (1 Peter 5:7). So I literally say, for example, what I've been praying lately, "Jesus, I give you my grief over my cat. I can't carry it anymore so I'm giving it to you. I give you my pain, my sorrow, and my anxiety. I need your peace that passes understanding and your strength." I believe that He is literally bearing the weight of my sorrows, as He did on the cross and I feel the burden being lifted.

So often I get frustrated that I can't do things on my own, that because I'm so sick, I must depend on God for everything. Then I realize how silly I'm being, since the times that I'm truly depending on God for my very emotional and mental well-being, I'm the freest that I ever feel.

A couple books have really helped me lately. The first is by Joni Eareckson Tada, who has been a quadriplegic for over 40 years. She's so down to earth and an amazing writer and her wisdom has been hard-won. My favorite book by her is, Heaven: Your Real Home. It gave me so much hope and a real excitement for the future with Jesus. The other book is called Spiritual Sunlight for the Weary compiled by Lynn Vanderzalm. It's a collections of "meditations" or devotions written by people who have CFIDS or autoimmune illness. One of the writers is a dear friend of mine, Marilyn Marshall, who has lupus and a few other debilitating diseases. The devotions are honest and comforting, written by people who truly "get it" regarding what it's like to live with a debilitating, invisible disease. And of course, the book that helps me the most is the Bible. I have my favorite verses that I read over and over, especially from the book of Romans Chapter 8, Matthew 11:28-30, and Philippians 4:6-7.

I'll be thinking of you and praying that you find some peace and encouragement from the Lord. I've been through the SSI process, denied twice and had to do the hearing. My legal aide lawyer did most of the work, thankfully, and I didn't even have to see the judge myself. Still, it was exhausting and stressful!

Anonymous said...


I wrote you an email to your tlc address...hope I still have the correct one.

Thinking of you,

Sue Jackson said...

Oh, Terri, I'm so sorry for all that you're going through. Please, please know that you are deeply cared about and are an essential part of this online community. Not only do you have all of us to lean on for support, but you have given so much to us as well. Your blog is always so honest and informative and helpful. You have helped many of us through difficult times ourselves, and we are here for you now.

It sounds as though you definitely need a new doctor. I know it takes energy to find someone new, but you deserve the best care you can get.

I'm guessing you have probably already tried the Good Doctor List, but if not, here it is:

Here's another CFS doctor database:

And I've heard good things about Dr. Holtorf, though I think he's in a different part of CA than you are - maybe his office could suggest someone closer to you:

You've been there for us in the past. Please let us be here for you now. You are not alone,and your situation is not hopeless. Things will get better.

You're in my thoughts and prayers, Terri -


ChrisMooney78 said...

It is heartbreaking to hear that you are "pretty much bedbound for 22 hours of the day." Good luck with the hearing and, although it is easy for me to say it, try to keep your head clear and your chin up.

cfs_endurer said...

CFs Warrior, all I can say is you are very brave, all those who walk
this very difficult path of cfs are
incredible brave. Just hang on, as you know yourself take it day by day, when our feeling better encourage those that are down. On this path we learn to reach out, have compassion, we learn patience and kindness. What incredible spiritual virtues are those. If you start to feel bitter or angry, remember us that is suffering with you, you are never alone even if you question the existence of God it is His love and strength that will always be there for you. I am also thinking of suicide allot, but I came this far I know that I know if we make it all the way to the end of this road, not bitter and angry, we will have done well with this short difficult walk on good old earth, it anyway is temporary, that what we are sole and spirit is the only permanent part of us.

d page said...

I cried while reading your post. The terrain is all too familiar. I know that sometimes there is just nothing to be said. It's suffering,raw and wretched. When I am in that realm (often!), I think of the faces of those I love, and I remind my self that their loss (my suicide) would be more weight for them to bear then my struggle with life.
The only thing I know to do is just bear it. Long before I ever met my Lama (who has now passed), before I studied Vajrayana-- there was a book "When Things Fall Apart", by Pema Chodren. Now, 5 years into Vajrayana, there's a book---"When Things Fall Apart"....
Chogyam Trungpa was once asked "What does one do if one finds oneself in hell?" His reply "Just sit there." When I am there (almost always)that's all I do. Sit there, not wanting anything else, bearing the moment for what it is. I know with my heart that just bearing this benefits someone, somewhere. Even if I never know who...

P.S. Never stop advocating for yourself with the medical and other institutions.

Nishant said...

Trust in the Lord with all your heart and lean not on your own understanding, In all your ways acknowledge Him and He will make your paths straight. In other words he will show you the way through this dark time in your life. In isaiah we are told God has a firm grip on us. He will not let go.
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