On Wednesday last, we drove to Portland, Oregon, where we spent the night in a shabby, cheap motel, managed the incredibly tangled streets on both sides of the 405, and found our way to my appointment on Thursday at Oregon Health and Sciences University (OHSU).
An endocrinologist there had been recommended to me by another TCI patient, and this doctor had done well in getting her bones into shape for the fusion surgery, and also had discussed the patient with Dr. B, her neurosurgeon (and mine) at TCI. I felt good going into the appointment, knowing he already was familiar with the type of fusion I needed, and my surgeon.
Dr. Madison was great, speaking to me without condescension, asking many questions which sparked better answers than I had given on the questionairre I'd filled out at home. He cared, he was business-like and he was decisive in a way that really gave me confidence in him.
Basically, Dr. Madison feels that my bones are not "that bad." He feels the report from my recent density scan was in error (I think he called it a "medical artifact"). I've written previously that one statement on my report claimed that I had lost 8% of my bone mass at the lumbar region in less than a year.
Dr. M felt that was "virtually impossible," unless you have a severely aggressive bone cancer, in which case, you'd know that. [Knowing this now, I wonder why such an error is allowed out the door! Why did the radiologist who wrote that in my report not double check and understand that such a classification is likely in error?]
He told me that the lumbar region, in his opinion, is not the best place to determine the density of the bone throughout the body because so much is usually happening in the lumbar region on most people. He feels the hip gives a more accurate picture. And my hip bones look good.
He felt I had been given way too much pamidronate, and that it was not necessary for me to have kept on the Actonel for the last 18 months while I've also been on the pamidronate treatment. I asked if this excessive dose of pamidronate would harm me, and he said no.
I was smitten with him over one particular comment he made. I have mentioned before that one of the benefits of my Tethered Cord surgery was the surprising elimination of my TMJ problems. All of my life, my jaw has locked into a position that would not allow me to eat a normally sized sandwich, because it was too wide. I grew used to it, but in the hospital after my TC surgery, I noticed right away that I was able to open my mouth to eat and not have my jaw lock and not allow me to open any further. I've mentioned this to a few doctors and not had any good theories bounced back. When I mentioned this to Dr. M, he said, "That is probably because you were intubated for 7.5 hours during surgery and your mouth was held open for a long time."
Such common sense is so hard to find these days, and always surprises me when I hear it. That made perfect sense! And I so like understanding the how's and why's of these things.
He scheduled me right away for more labs and another DEXA scan. Before I left, he ventured, "I might change my mind after seeing your labs and new DEXA, but right now, I'd say that your bones are not that bad. That you have mild to moderate osteopenia. As far as the surgery goes, the only way to determine for sure how your bones are in the area of surgery is to take a bone biopsy. I will not do these because they are so painful for the patient."
"I might put you on six months of Forteo shots after I see your labs and scan. In that case, you would come back in to see me in about three months."
I went on ahead to the lab where they pulled 8 vials of blood, then my husband and I got lost, trying to find where the DEXA's are done. This is a huge university with many buildings, old ones and new ones and old ones more recently added on to. Where I needed to go, the building had 3 elevators, but only one, the C elevator, would take me to the floor where the bone scans were done. Eventually, lost in ICU, we were rescued by a kind doctor who led us far out of his way to the elevator that would take us to the correct floor.
By this time, my brain was fried. Too many new people, talking too much, thinking too much, getting lost, following directions...so that after the DEXA was done, the technician told me to get dressed and I could leave. I walked to the chair where my clothes were, and put on my shoes and started to walk out from behind the curtain, with just the gown still on. Thankfully, I recognized my mistake before going too far!
We got lost leaving Portland, as well, and ended up going a bit further south than we needed to, but we saw some different communities and streets, and the sky was bright blue with the snow-covered tops of Mt. St. Helens and Mt. Hood shining close by.
Going over to Portland and coming home, except for the times we were in the busiest traffic, I did not wear a collar or CTO vest. Those things just cause me so much "brain pain." I figured I'd survive the trip better without that painful passing-out feeling (I've since figured out, I think, what this is, which I'll address in another post). I just prayed, "Lord, if we get into an accident, let me die outright rather than be paralyzed."
I came away feeling very good about the new endocrinologist. It looks like I might have the option of having the fusion I so desperately need, yet it looks like it could be a year before I could get it done. I like having another year to make up my mind about this, to be sure. I keep going up and down, on a roller-coaster. Like a trainer in the corner of the ring before his boxer is about to step back into the fight, I have been coaching myself and cheering myself on about this surgery.
"You can do it! You'll be so much better! Don't listen to the failed fusion stories! You have no choice!"
Then something happens, and I can't have the surgery at the time I have pumped myself up into expecting. So then, in survival mode, I tell myself the surgery would have made me worse, the Lord knew what was best for me, I just have to get used to not having the option of getting better.
Then...the bell rings, the wooden stool gets swept away, the trainer pats me on the back and I stumble forward back into the center of the ring, arms up and swinging, "You can do this! You'll be so much better..."
Saturday, January 17, 2009
Tuesday, January 13, 2009
Letter to those without Chronic Pain
I read this online and thought the author did a wonderful job. I'm sharing it here, along with the link to the migraine site it was featured on. http://tinyurl.com/a2lfh7
Now, I do not post this for MY friends and family. I honestly am blessed with loved ones who truly do understand my situation, and who care immensely.
But I am posting this for those who are suffering, and perhaps this letter, printed out, could help your family and friends to understand, if that need exists.
************************************************************************
Letter to people without chronic pain:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
That's what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!”
If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?
I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has included failure, which in and of itself can make me feel even lower.
If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.”
I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.
Now, I do not post this for MY friends and family. I honestly am blessed with loved ones who truly do understand my situation, and who care immensely.
But I am posting this for those who are suffering, and perhaps this letter, printed out, could help your family and friends to understand, if that need exists.
************************************************************************
Letter to people without chronic pain:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand:
These are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
That's what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying ” You did it before” or “oh I know you can do this!”
If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?
I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has included failure, which in and of itself can make me feel even lower.
If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.”
I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.
Monday, January 12, 2009
Resolutions
New Year's Resolutions
I don't make them.
Because I don't like not keeping promises, even to myself.
But I do make notes to myself, and around the first of the year, I wrote "Notes to Self," in long-hand, seriously, knowing that if I would do these things, I would do better.
I don't make them.
Because I don't like not keeping promises, even to myself.
But I do make notes to myself, and around the first of the year, I wrote "Notes to Self," in long-hand, seriously, knowing that if I would do these things, I would do better.
NOTE TO SELF
Do not kneel down....ever! I've already broken this one, the other day.
Do not shovel snow....ever! You can be a wimp inside looking out at the work that you are leaving your husband to do...or you can be a HURTING wimp, for days and days, inside looking out. Either way, you are inside looking out. I've sort of kept this one so far, though I did "push" a little bit of melted ice with the snow shovel, but that doesn't count, does it?
Focus on what you CAN do instead of wanting to hold onto pieces of what you used to do. Your husband will be exponentially happier the more often you are not in pain. I've kept this one really well. Maybe philosophical changes are easier for me than physical ones!
Wear collar. Several times throughout the day. Collar use makes posture better. Better posture means less Tethered Cord symptoms. Collar assists both head pain and below the waist. Fusion would also do the same, according to Dr. B. The posture is the key thing. Uh....you don't want to know....I have stopped wearing the CTO in the vehicle and can travel a little bit better. I don't have that "put me into painful passing out thing" going on when I'm not wearing the CTO. I do wear the collar in the vehicle now, that seems to work okay for me. I wear it into the stores...and to the movies yesterday (saw "Gran Torino"...great movie). But around the house...not so much.
Pain meds. Take less when you can. The less you take, the better they work! Embrace pain sometimes and skip pain med so that when you do take it, it works. This absolutely works!
Don't give up on fusion. Think of people you know who say fusion was helpful. Kara, Kathymichelle, Grma Lee, Lisa. You do not have EDS. Many people, if not most of the ones you know online who are struggling post craniocervical fusion have Ehlers Danlos Syndrome. You have instability from severe trauma. Your situation is different. Don't forget it. Absolutely!
Quit Caffeine. It's bad for bones. Done!
The less you weigh, the easier on your feet and legs, and possibly you will have less pain. Ah, this one is harder. It's durn near impossible to lose weight when you can't do any activity. The snow is gone and I perhaps could start walking across the road, something I so love to do...but when I do it the first time, I'll find out how that works for me. Just walking through Home Depot makes me pay dearly for days.
Lay down often, rest your head, take the weight of your head off of your spine. I try. Most days, I do this.
Well, I didn't do as badly as I'd thought I'd do. It never hurts to remind ourselves of what must be done to get along as best we can. We all have our challenges.
Sunday, January 11, 2009
Daily Messages
A couple of months ago, I felt inspired to send out daily messages to those online whom I felt would enjoy them and appreciate them. I've been doing it almost every day now since then, and it has become something ritual for me, and a great blessing.
These messages that I type up (not copy-paste or forward) from the little book, Bedside Blessings by pastor-teacher Chuck Swindoll, are emailed each day to about 80 people. Right after I started sending them out, I did write everyone giving them ample invitation to "opt out," and only 3 people out of the 80 or so decided not to receive the messages. That was okay with me, and still is.
But oh what blessings I've had from having this opportunity to "connect" daily with so many people! God must have known what He was doing (of course, He did!) to lead me to this activity. No one can send something meaningful to so many people each day, but through this experience, I have been able to do just that!
The messages are short and sweet, contain commentary by Pastor Swindoll, and then a short Scripture. From these, so many people have written to me to tell me on certain days that a specific message was meant just for him/her! I might be typing up the message from my little book, thinking, "This message is pretty basic. I don't know if it will be that meaningful for anyone," when immediately comes an email back, telling me that the words touched a heart, told the same story they had lived with and struggled with. God just gifts me with these "feedback blessings" almost every day, and I love it.
One lesson went out with a plea to the reader that "you are not accidental! God has a plan for your life!" and I wondered, who might that speak to? Then a woman friend who has great suffering in her life wrote to me that she'd always been demeaned throughout her childhood with just those words!
A crusty, old cowboy-friend writes me almost every week telling me how these messages have touched his heart, telling me in a self-deprecating way that, "I need them more than most." I get to see a part of him that I never expected, that soft and tender, spiritual side. And I am blessed.
Lord, You knew what I did not. Today, I look back and think, "What a silly thing to do?! Why did I have that idea? That nudge?"
And then I reread the precious notes sent back to me that have nothing at all to do with surface observations or facades. They have everything to do with hurt, grief, deep thinking, the basest level of their being where they yearn for God, hunger for what is real. I can look into those hurting hearts, those honest spaces within the readers, when they reflect back to me how a message touched them, for a brief moment, and I relish the true spirit of mankind.
Thank You, Jesus for this immeasurable and unspeakable Gift.
And thank you, Pastor Swindoll.
If anyone reading this doesn't receive these daily messages but would like to, please just give me your email...
These messages that I type up (not copy-paste or forward) from the little book, Bedside Blessings by pastor-teacher Chuck Swindoll, are emailed each day to about 80 people. Right after I started sending them out, I did write everyone giving them ample invitation to "opt out," and only 3 people out of the 80 or so decided not to receive the messages. That was okay with me, and still is.
But oh what blessings I've had from having this opportunity to "connect" daily with so many people! God must have known what He was doing (of course, He did!) to lead me to this activity. No one can send something meaningful to so many people each day, but through this experience, I have been able to do just that!
The messages are short and sweet, contain commentary by Pastor Swindoll, and then a short Scripture. From these, so many people have written to me to tell me on certain days that a specific message was meant just for him/her! I might be typing up the message from my little book, thinking, "This message is pretty basic. I don't know if it will be that meaningful for anyone," when immediately comes an email back, telling me that the words touched a heart, told the same story they had lived with and struggled with. God just gifts me with these "feedback blessings" almost every day, and I love it.
One lesson went out with a plea to the reader that "you are not accidental! God has a plan for your life!" and I wondered, who might that speak to? Then a woman friend who has great suffering in her life wrote to me that she'd always been demeaned throughout her childhood with just those words!
A crusty, old cowboy-friend writes me almost every week telling me how these messages have touched his heart, telling me in a self-deprecating way that, "I need them more than most." I get to see a part of him that I never expected, that soft and tender, spiritual side. And I am blessed.
Lord, You knew what I did not. Today, I look back and think, "What a silly thing to do?! Why did I have that idea? That nudge?"
And then I reread the precious notes sent back to me that have nothing at all to do with surface observations or facades. They have everything to do with hurt, grief, deep thinking, the basest level of their being where they yearn for God, hunger for what is real. I can look into those hurting hearts, those honest spaces within the readers, when they reflect back to me how a message touched them, for a brief moment, and I relish the true spirit of mankind.
Thank You, Jesus for this immeasurable and unspeakable Gift.
And thank you, Pastor Swindoll.
If anyone reading this doesn't receive these daily messages but would like to, please just give me your email...
Saturday, January 3, 2009
New Appointments
Well, my dear Dr. Fu felt quite badly about my bones being so much worse after 18 months of pamidronate IV treatments.
An online friend who lives on the other side of Portland, OR, told me about her endocrinologist at OHSU, a Dr. Madison. She said that she went to him after she'd undergone 2 years of a treatment and her bones were worse...
Dr. M put her on daily Forteo shots (at home) and in six months, scanned her forearm (bone density scans always scan lumbar region and hip bone), pronounced her fit for the extraction fusion done at TCI, he even conversed with Dr. B on the phone about the case. Dr. B did proceed with her fusion, so her bones must have been acceptable to him...it all sounds like a possibility for me.
I still want the fusion. I'm not afraid of the halo anymore. I'm afraid of NOT getting the surgery, and I know the 4 months of halo are part of that. I'm back on the white horse and joining the cavalry.
My online friend told me it takes months to get in to see the great Dr. M.
I told Dr. Fu about Dr. M, and he said he wanted to get me in to OHSU, and he'd talk to Dr. M.
He must have done so, because the other day, I received a call and I have an appointment in Portland at OHSU with Dr. M for Jan. 15. This should be interesting.
Dr. Fu also wants me to see a local neurosurgeon for a 2nd opinion on my skull/neck. He put in to work comp for authorization and they approved it.
I'm so conflicted now. I don't want to see another surgeon. I like the surgeon I have, except he is 3000 miles away. But, this surgeon is from a spinal cord injury center, and I've never been evaluated by such a specialist (except Dr. B, of course)...maybe this is something good. Maybe it'd be good to have someone local who would be on board to help in the event I needed local help, post a possible surgery in NY. Another surgery in NY.
I guess I will go with the flow. I finally received approval for the Lidoderm patches after over 3 months! So, on Friday, that was our main reason to drive the 35 miles to town, to get the patches.
And deja vu all over again, the gal at the pharmacy drive through window says, "Your Lidoderm patches are permanently denied." I said, "No, I got word they are authorized." Well, in the work comp computer, they are still "permanently denied," and those words humiliate me and make me feel like a criminal. 70 miles round trip and I don't get the patches which do help me so much! I was so mad, really I was. What kind of game is this?
I will call work comp on Monday and they will make the notes in the computer and my husband can make the trip to town to get the patches...sigh...
On the other hand, what fun today watching the birds coming to our little feeder tray on the outside railing: Stellar jays and blue jays and several little birds I don't know the name of. And one big female woodpecker.
An online friend who lives on the other side of Portland, OR, told me about her endocrinologist at OHSU, a Dr. Madison. She said that she went to him after she'd undergone 2 years of a treatment and her bones were worse...
Dr. M put her on daily Forteo shots (at home) and in six months, scanned her forearm (bone density scans always scan lumbar region and hip bone), pronounced her fit for the extraction fusion done at TCI, he even conversed with Dr. B on the phone about the case. Dr. B did proceed with her fusion, so her bones must have been acceptable to him...it all sounds like a possibility for me.
I still want the fusion. I'm not afraid of the halo anymore. I'm afraid of NOT getting the surgery, and I know the 4 months of halo are part of that. I'm back on the white horse and joining the cavalry.
My online friend told me it takes months to get in to see the great Dr. M.
I told Dr. Fu about Dr. M, and he said he wanted to get me in to OHSU, and he'd talk to Dr. M.
He must have done so, because the other day, I received a call and I have an appointment in Portland at OHSU with Dr. M for Jan. 15. This should be interesting.
Dr. Fu also wants me to see a local neurosurgeon for a 2nd opinion on my skull/neck. He put in to work comp for authorization and they approved it.
I'm so conflicted now. I don't want to see another surgeon. I like the surgeon I have, except he is 3000 miles away. But, this surgeon is from a spinal cord injury center, and I've never been evaluated by such a specialist (except Dr. B, of course)...maybe this is something good. Maybe it'd be good to have someone local who would be on board to help in the event I needed local help, post a possible surgery in NY. Another surgery in NY.
I guess I will go with the flow. I finally received approval for the Lidoderm patches after over 3 months! So, on Friday, that was our main reason to drive the 35 miles to town, to get the patches.
And deja vu all over again, the gal at the pharmacy drive through window says, "Your Lidoderm patches are permanently denied." I said, "No, I got word they are authorized." Well, in the work comp computer, they are still "permanently denied," and those words humiliate me and make me feel like a criminal. 70 miles round trip and I don't get the patches which do help me so much! I was so mad, really I was. What kind of game is this?
I will call work comp on Monday and they will make the notes in the computer and my husband can make the trip to town to get the patches...sigh...
On the other hand, what fun today watching the birds coming to our little feeder tray on the outside railing: Stellar jays and blue jays and several little birds I don't know the name of. And one big female woodpecker.
A glimpse of normal
So, Friday, we went to our shopping town to do errands. It seems about all I write about here is my little jaunt 35 miles to go shopping, but guess that shows you how big my world is.
I decided to go and have a fine time. The sun was out, and the sky was brilliantly blue. The Columbia Hills, which are treeless and very tall, had snow on the upper reaches and green grass below. It was so enchanting to me, someone who had not been out of the house for awhile.
I did not wear the CTO vest. I decided the vest causes me so much brain-pain and the dark tunnel sleep, that I would try the Aspen collar, cinched up snug, instead.
Once into town, I took off the collar to go into the drug store, and decided NOT to put it back on when I got back into the truck. It also was creating the brain-pain (so different than a headache, it's a swimmy, foggy pain that results into almost passing out), so I left it off and left it to God. Please don't let us get hit by another car, Lord! I prayed.
We next drove to Home Depot and I told my husband jauntily, "I'm going in with you!" Once inside, sans neck brace, I started looking at lighting by myself and this overwhelming sense of euphoria came over me. I felt entirely WELL. I did a mental check of my usual "complaints" and, nope, they were not hurting. It's true. I feel good. Little Richard would be proud.
I felt like skipping through the big store. I didn't....but I felt like it.
The gift of normalcy lasted 30 minutes. Can I emphasize that to those who are reading this and do not suffer 24/7 chronic, central pain? That you get up and go about your business in the morning and throughout the day and of course, you have your problems and your times of suffering, but you still have a pretty normal body that feels pretty normal most of the time.
Just imagine every day, day in, day out, nighttime, every breath, for over four years, no normalcy. Not feeling that "well being" inside your bones and your muscles and your brain? Every second, it hurts deep and profound, and limitations are endless. Then, a window opens and you honestly feel good...no pain...strong...want to skip, of all things! It's a totally different thing than that "find good in every day" and "count your blessings" and that "be happy in spite of your suffering" kind of feeling good.
It's a feeling of GOOD as deep and profound and diffuse as the PAIN you are used to.
Amazing!!
I knew it would not last. I have had these glimpses perhaps four times since my injury. I know they do not last. For me, I ate it up. I looked left and right and up and down at store items. I went into four different stores, and also a restaurant. I kept my collar off until we headed onto the highway for home.
'Bout that time, things started to come back. Crushed nerves started to win out over fooled brain cells which had thought for a few minutes that, hey, she's not wearing the collar, she must be healed.!
and I felt healed! I actually had a touch of healing, for a half an hour, I knew what it would feel like to be healed, touched by God, receiver of a miracle! I thought that, even. "I'm healed."
And I also wondered if I were to get the fusion and have the bracing from my mid-Cspine up to the back of my skull, would I have more days like this?
Today, the day after this delightful excursion, I paid dearly. I wanted to die. How could I hurt this deep for the rest of my life? This is so deep...that words fail me so badly. I know people in excrutiating pain...that is not this...I'm not on the floor of a dark closet in a fetal position. But whatever this is, why don't they have a name for it, a word for it?
and why do I keep trying to define it...to share it? I don't know...
I decided to go and have a fine time. The sun was out, and the sky was brilliantly blue. The Columbia Hills, which are treeless and very tall, had snow on the upper reaches and green grass below. It was so enchanting to me, someone who had not been out of the house for awhile.
I did not wear the CTO vest. I decided the vest causes me so much brain-pain and the dark tunnel sleep, that I would try the Aspen collar, cinched up snug, instead.
Once into town, I took off the collar to go into the drug store, and decided NOT to put it back on when I got back into the truck. It also was creating the brain-pain (so different than a headache, it's a swimmy, foggy pain that results into almost passing out), so I left it off and left it to God. Please don't let us get hit by another car, Lord! I prayed.
We next drove to Home Depot and I told my husband jauntily, "I'm going in with you!" Once inside, sans neck brace, I started looking at lighting by myself and this overwhelming sense of euphoria came over me. I felt entirely WELL. I did a mental check of my usual "complaints" and, nope, they were not hurting. It's true. I feel good. Little Richard would be proud.
I felt like skipping through the big store. I didn't....but I felt like it.
The gift of normalcy lasted 30 minutes. Can I emphasize that to those who are reading this and do not suffer 24/7 chronic, central pain? That you get up and go about your business in the morning and throughout the day and of course, you have your problems and your times of suffering, but you still have a pretty normal body that feels pretty normal most of the time.
Just imagine every day, day in, day out, nighttime, every breath, for over four years, no normalcy. Not feeling that "well being" inside your bones and your muscles and your brain? Every second, it hurts deep and profound, and limitations are endless. Then, a window opens and you honestly feel good...no pain...strong...want to skip, of all things! It's a totally different thing than that "find good in every day" and "count your blessings" and that "be happy in spite of your suffering" kind of feeling good.
It's a feeling of GOOD as deep and profound and diffuse as the PAIN you are used to.
Amazing!!
I knew it would not last. I have had these glimpses perhaps four times since my injury. I know they do not last. For me, I ate it up. I looked left and right and up and down at store items. I went into four different stores, and also a restaurant. I kept my collar off until we headed onto the highway for home.
'Bout that time, things started to come back. Crushed nerves started to win out over fooled brain cells which had thought for a few minutes that, hey, she's not wearing the collar, she must be healed.!
and I felt healed! I actually had a touch of healing, for a half an hour, I knew what it would feel like to be healed, touched by God, receiver of a miracle! I thought that, even. "I'm healed."
And I also wondered if I were to get the fusion and have the bracing from my mid-Cspine up to the back of my skull, would I have more days like this?
Today, the day after this delightful excursion, I paid dearly. I wanted to die. How could I hurt this deep for the rest of my life? This is so deep...that words fail me so badly. I know people in excrutiating pain...that is not this...I'm not on the floor of a dark closet in a fetal position. But whatever this is, why don't they have a name for it, a word for it?
and why do I keep trying to define it...to share it? I don't know...
Where to start?
I have had a lot of thoughts I've wanted to blog lately.
But I've felt too weak. Too weak to type. And if I have strength to type, there are some other important things I need to type, like support group stuff.
Tonight is no better, but I better give it the ol' college try or another week will pass and I'll have forgotten anything and everything.
My husband has a custom spur-making business (since we are old cowboys). I get to meet the most fascinating people, horse-lovers all, from around the world (I can say truthfully because one pair of our spurs went to France). A particularly nice horsetrainer/clinician called from Oregon a few days ago and we chatted a long time about a variety of ranch-related things.
He wrote to me a couple of days ago with a price question on the spurs he'd like built. We love every order that comes in, and every one is a nice little pick-me-up to the pocketbook. In my mind, I'd replied to his email, a long letter with particulars listed. He called today and asked if I'd gotten his email? I said yes, did he get my reply. No, he had not.
I was quite sure it was HIS computer's fault, not mine, as I looked a tad frantically through my two email programs for his email which would show I had replied. Or my answer to him in my SENT box. Nothing in the Sent box in either program. Ah, there was his email to me and completely unanswered...the little arrow on the envelope to the left of the subject title was missing. I had hallucinated all of that, I guess...glad he called back!
When we first moved here almost two years ago, I was so anxious for one of my dearest friends to come visit me. It was one of the main things that seemed to draw me back to this wonderful state, to be closer to this particular friend. Of course, out West, closer can be factored as five hours apart, which we are.
Finally, she mentioned recently that she and her husband would like to come visit us. I was so thrilled that finally, she'd be seeing my home and I could laugh and visit with her. I told her to come as soon as she'd like, they could stay a night or two, whatever would work for them.
Lately, I have been really bad off. Again, I hate to sound complaining, but like I said in the last post, it is what it is and I can't paint a good face on it right now.
If only there were a way to describe central pain, which emanates from the spinal cord. I thought of a way last night, in the deep throes of this pain. Think of the worst flu you've ever had...how it affects every single fiber or cell of your entire body. Central Pain is like that. It is so diffuse, yet with specific body parts that light up for whatever reasons (crawling scalp; burning arms; itching arms; painful feet and legs, etc) But I can't separate the specific points from the rest of my body because it hurts in every single cell.
Yet, it's not a hurt like I've felt before (except in the last 4.5 years). And I have had some really painful experiences. It's so dang deep, but it's not a "screaming with pain" sort of thing. It's bad pain but the bad part is it's all encompassing, and this wears you out, makes you too weak to think straight.
On New Year's Day, I called my mother and we had a lively visit for 78.5 minutes, my cell phone told me. And I suffered through so much of it with pain in the back of the head, and a very painful throat.
Hanging up the phone, I knew.
I knew I'd have to cancel my friend's longed-for visit. If she lived down the road and could come visit for an hour, great. But all day? Overnight? The next day?
And she really loves to laugh. As do I. As I used to be able to do. But not anymore, or I suffer greatly.
Laughing, talking, singing, it's all connected somehow to the back of the head. And the glossopharyngeal nerve damage I suffered causes the painful throat when talking. Talking and laughing are what this friend and I are ALL about! Asking her not to laugh would be like asking the Israelies not to invade the Gaza Strip right now.
I wrote and told her we must postpone the visit and she was very saddened. As was I. But...it is what it is.
I joined for a brief period a brain-injury support group, though I quit after a week. It was too confusing for me. But one woman said that in order to organize her life, she had to realise what was too much for her, make it smaller or get rid of it. I think she called it "define, diminish and delete."
I had to delete the visit.
But I've felt too weak. Too weak to type. And if I have strength to type, there are some other important things I need to type, like support group stuff.
Tonight is no better, but I better give it the ol' college try or another week will pass and I'll have forgotten anything and everything.
My husband has a custom spur-making business (since we are old cowboys). I get to meet the most fascinating people, horse-lovers all, from around the world (I can say truthfully because one pair of our spurs went to France). A particularly nice horsetrainer/clinician called from Oregon a few days ago and we chatted a long time about a variety of ranch-related things.
He wrote to me a couple of days ago with a price question on the spurs he'd like built. We love every order that comes in, and every one is a nice little pick-me-up to the pocketbook. In my mind, I'd replied to his email, a long letter with particulars listed. He called today and asked if I'd gotten his email? I said yes, did he get my reply. No, he had not.
I was quite sure it was HIS computer's fault, not mine, as I looked a tad frantically through my two email programs for his email which would show I had replied. Or my answer to him in my SENT box. Nothing in the Sent box in either program. Ah, there was his email to me and completely unanswered...the little arrow on the envelope to the left of the subject title was missing. I had hallucinated all of that, I guess...glad he called back!
When we first moved here almost two years ago, I was so anxious for one of my dearest friends to come visit me. It was one of the main things that seemed to draw me back to this wonderful state, to be closer to this particular friend. Of course, out West, closer can be factored as five hours apart, which we are.
Finally, she mentioned recently that she and her husband would like to come visit us. I was so thrilled that finally, she'd be seeing my home and I could laugh and visit with her. I told her to come as soon as she'd like, they could stay a night or two, whatever would work for them.
Lately, I have been really bad off. Again, I hate to sound complaining, but like I said in the last post, it is what it is and I can't paint a good face on it right now.
If only there were a way to describe central pain, which emanates from the spinal cord. I thought of a way last night, in the deep throes of this pain. Think of the worst flu you've ever had...how it affects every single fiber or cell of your entire body. Central Pain is like that. It is so diffuse, yet with specific body parts that light up for whatever reasons (crawling scalp; burning arms; itching arms; painful feet and legs, etc) But I can't separate the specific points from the rest of my body because it hurts in every single cell.
Yet, it's not a hurt like I've felt before (except in the last 4.5 years). And I have had some really painful experiences. It's so dang deep, but it's not a "screaming with pain" sort of thing. It's bad pain but the bad part is it's all encompassing, and this wears you out, makes you too weak to think straight.
On New Year's Day, I called my mother and we had a lively visit for 78.5 minutes, my cell phone told me. And I suffered through so much of it with pain in the back of the head, and a very painful throat.
Hanging up the phone, I knew.
I knew I'd have to cancel my friend's longed-for visit. If she lived down the road and could come visit for an hour, great. But all day? Overnight? The next day?
And she really loves to laugh. As do I. As I used to be able to do. But not anymore, or I suffer greatly.
Laughing, talking, singing, it's all connected somehow to the back of the head. And the glossopharyngeal nerve damage I suffered causes the painful throat when talking. Talking and laughing are what this friend and I are ALL about! Asking her not to laugh would be like asking the Israelies not to invade the Gaza Strip right now.
I wrote and told her we must postpone the visit and she was very saddened. As was I. But...it is what it is.
I joined for a brief period a brain-injury support group, though I quit after a week. It was too confusing for me. But one woman said that in order to organize her life, she had to realise what was too much for her, make it smaller or get rid of it. I think she called it "define, diminish and delete."
I had to delete the visit.
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