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I recently saw this How to Cope with Pain article on
Thoughts about Balance when you have Chronic Pain
it brought up some challenging memories and thoughts, as well as a sense of accomplishment for what I've recently learned.
( Read more... )

Note: The subject line of this entry is from a song by the Byrds as well as the verses quoted above.

Last year during the month of November, I blogged about awareness of Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy. It's easy, incredibly easy, to focus on what the pain takes away, the leg that doesn't want to weight bear, the pain of caring for personal needs, the effect it has on those around us. It's easy to let the medical appointments, medications and other treatments take over much of our life. Put that together with school, raising a family or employment and it's a very difficult life.

What I really want to focus on now, however is coping. Learning to build a life, even with the horrible disease. Learning ways to feel better, or at least tollerate feeling bad. This is a hard concept for me. There are times when I think "I don't want to cope, I want this to go away!" But recently, I've been in a position to learn coping skills, mainly for anxiety, but also for depression and pain.

I've learned that it's important to rebuild a life full of things which are good. Coping doesn't just mean staying on track with meds which can only do so much, it means working to achieve goals and finding something, even a little thing, to help make the situation better.

The most important thing about doing this is that even a little change, a little positive step forward can bring a great sense of accomplishment. Even when the pain and anxiety are horrible, knowing that you did something to help yourself takes some of the power away from the pain or whatever it is. Some nights, when I sleep only for two or three hours and only in 15 minute chunks at that, coping is hard. And yet, when I look back in the morning, I can say "well, I tried x, y, and z" and feel better about the situation.

I don't feel this way all of the time, but I am slowly trying to add this attitude to my days. I'm finding new skills and hobbies and joy I didn't feel before.

I hope that sharing this little piece of my journey helps you. Remember that my life is not your life, but there is hope for a brighter future. You won't always feel it, but with time it can creep back into your life.

I'm embarking on a journey, a journey to learn more about myself, my pain, my life and my resources. I think I've been on this journey for quite some time, but I haven't been the one making all of the choices. Much of the time, I find myself feeling like things are out of control.. That said, I'm writing my way through this journey when I can.

Prompt: from Reversing Pain

Explore different key words and their effects on your breathing and record the suggestions
that work for you in your pain journal.

I've always liked the words suggested in the
Panic Attack Program from Health Journeys
The words are "I am peace" on the inhale and "I am calm" on the exhale. But what other suggestions could I use with my breathing?

Comforting... Breath
Be... Still.
Healing... Comfort.

Any other suggestions?

I need to confess something... I have a problem, a problem with shoes, that is. You see, it's hard to find shoes I can wear comfortably. Between the sensitivity and pain in and the swelling in my left foot, and the fact that my right foot is about one size longer than my left foot (I think this is due to the RSDS/CRPS hitting me while I was still growing, but that's not something I can prove). I'm a very difficult customer for the poor person who gets stuck trying to help me find shews which meet all of my needs. If I'm going to have any chance of wearing them, they need to meet several different criteria:

1. They have to fit: If I can't get the shoe on over the swelling, it's not an option.


2. They have to be comfortable for me. This sounds really simple, but it's not so easy for someone with Complex Regional Pain Syndrome to find clothing or shoes which are comfortable. For me, the comfort factor includes:
   
   
   
   • Softness: I don't like hard shoes or hard soles. I don't care how supportive they're supposed to be, I don't like hard shoes because they hurt. I need something soft between me and the hard floors and sidewalks I travel along every day.
   
   
   • Ease of getting in and out: I sometimes will be looking at a new pair of shoes. The shoe looks great, a roomy toe box, and some of my other needs appear to be there from the outside. But when I try to get my foot in, I can't get past having my toes touching the heel from inside the shoe, or if I do, it's extremely painful.
   
   
   • Shape: It's not enough to just have shoes which are "big enough" when we're dealing with my foot, the shoe needs to fit, even as the fluid in my foot changes shape depending on factors I can't begin to identify.
   
   
   
   
3. The shoes have to be somewhat supportive, just so I can wear them without causing some form of damage.

As you can see, I can't just walk into Wal-Mart, Target or even most of the popular shoe stores because they usually do not have something which meets my needs. For the last month, I've been using the surgical shoe from when I had surgery on the little broken toe on the right side. I've put it on the left foot which was actually working pretty well, until, that is, the weather got cold again. Needless to say, that worked fine until now when it's all rainy and cool. In addition, after about four months of constant abuse, the shoe is starting to fall apart.

My Dad found a store which specifically works with shoes which are more custome, including those for people who have trouble finding shoes which fit. I was able to get a pretty rugged pair of slippers which will be comfortable, even in a flare, they open up at the top so you don't have to shove your foot in and that allows me to have lots of room and less of the shoe actually touching me than you'd expect. I also got a Mary Jane type shoe which has stretchy fabric on the top. We'll also be getting a pretty wide version.

I did a google search and it looks like there are stores in other places than where I live. The company is
Foot Solutions
I'm not being asked to review their products or anything, but I know how hard it is to find shoes for someone with RSDS/CRPS, so I wanted to make others aware of this resource.

I wanted to make sure that everyone knows about the excellent articles posted at the
Pain blog carnival for September
My post about touch is listed, but there are many other excellent articles this month. Go read and learn!

These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout wacy in some cases such as the links from
Delicious
br>going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• Moved back to campus. In lots of pain from the move but glad to be back and nervous about everything.
• I just set my background to 50 supporters of Invisible Illness Week you can too: is.gd/310WW
• @darrell If you want to consult Handytech, try www.handytech.us, they're very responsive w/ questions.
• @tunedtochords That's horrible! I'd hit the relative back... Hard. Send a nice pat to Hester for me and Julio. We're here if you need us.
• @BrileyP Maybe I should try that! Is that a publicity suggestion? Lol...

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These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• A Mot so Touchy Situation icio.us/ecwjnq
• Wondering why I can't tweet from McTwit now. Anyone else have this problem?

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I've written a lot about touch and the challenges it brings when dealing with chronic pain and, more specifically, Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. The issue of touch can get pretty (excuse the expression), touchy. On one hand, it's really isolating to never be touched. We can communicate a lot through the simple shake of a hand, hug or pat on the shoulder. During Guide Dog training five years ago when I trained with Julio, I realized how much I relied on hugging my parents good night and hugging my friends at school and church when I spent a month with little if any physical contact of that type.

That said, with RSDS/CRPS, things get tricky. As the sensitivity spreads up my leg (now into my hip), I constantly find that touch is very painful. Think about it, how many times do you pat someone's knee, steady yourself on their leg or accidently bump someone gently but unintentionally? It's not a mallicious act, I don't know anyone who thinks to themselves I'm going to go around and touch people to cause them pain. In fact, if you don't know me well, or don't understand my type of pain and nervous system issues, you are wondering why I'm even writing about touch, again.

In RSD, there are several things which go wrong and several types of symptoms someone with the disease can experience. Only a few of them are relevant here. The most common symptom is pain. It's most commonly described as a burning pain, although for some of us, it's a cold burning pain, maybe like the pain of grabbing a bunch of snow with no hand protection. For many of us, the next symptom is sensitivity. I'm sensitive to touch, pressure, texxtures, cold and sound (or the vibrations caused by sound). This symptom is known as
allodynia
it's a sensitivity to something that is not normally painful. For me, this includes putting on my socks, pants and shoes as well as touch. Even a light brush with the finger is painful. Before I became ill from CRPS/RSDS, I would have thought this was crazy. In fact, I didn't report the symptom until a doctor asked me and even then, I was extremely hesitant until the doctor explained that it's not my fault that this happens.

So anyway, now that I have this sensitivity to touch, I've been forced to figure out how to deal with it. For most of the time I've had CRPS/RSDS, I have felt uncomfortable telling people that their touch hurts. It's an odd symptom and I knew that people weren't trying to cause me pain. I wrote about the problem of painful touch, I told people about it when they asked about my pain but I never told people they were causing me pain. My friends and parents knew and often I'd have someone who knew about the touch issue sit on my left side to protect me. My friends and parents were also good about helping me out with the problem when it happened. They often warned people or even stopped them from touching my leg if they saw it happening. But because I have a hard time communicating when I'm in pain as it's happening, I rarely said anything myself.

That is, until this summer. At one point during convention, someone touched my leg. I knew that they'd simply forgotten about the pain touch causes me, but my relationship with this person is strong enough that I can simply ask them not to do that and it's okay. So I simply asked my friend not to touch me there again. The sky didn't fall down. The next week when I was receiving the Ketamine treatments, everyone was so good about not touching my leg without warning that it reinforced my new self-advocacy. Over the last month, I've been working on setting physical boundaries. I've worked at communicating with others so they know what hurts and what doesn't.

I think people feel bad when I explain that what they've done causes pain, but so far, everyone has gotten over it. I've also noticed a paridoxical response. People are more willing to touch me in other ways, giving a hug, shaking a hand. I think knowing what they can do and can't do helps. If they're not sure, they just ask. In a way, setting a clearer boundary in a respectful, non-threatening way has taken down barriers I wasn't even aware of. As school starts up again, I'm going to work on setting those healthy, respectful boundaries.

These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• @pyyhkala I'd be ready to get rid of the Moto Q9C just to get rid of the crashes alone...
• @pyyhkala I have the Moto Q which freezes up. I'm mostly the same as at convention. Summer was good, got to a beachh in FL. How are you?
• @musicgirl84 Exactly! It's a real pain, especially when you've just about finished a message and the thing goes boom. Not really, but...
• This online conference is going to be vital for women in pain I think icio.us/xhk3wr
• @RicksterTheGeek My theory is it's a form of compensation for the lack of accewss to other books plus other entertainment is less accessible
• @chronicbabe Great site! And it's easy to get around it too. :)
• @karenshandrow I'm sorry your day was so bad. Hope tomorrow will be a better one!
• @kolby12091988 I will be praying for things to go well. I know that's a tough decision, but we will all be praying and here for you.
• Still don't have all of my programs back on my MSI Wind, realized I don't have Adobe Reader, Winamp, skype and WL Messenger downloaded yet.
• Thing is, I don't mind working through web sites to find 1 program, but when I need lots, from many sites, it's difficult, access varies...
• Sometimes I'm really tempted by the tags some users use on Twitter, but sow many become quite upset about them that I'm hesitant. What 2 do.
• @SkhyeRing Exactly, I don't get it either. I think, maybe, they're the tags which start with a hash (I always say numbersign (Braille habits

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These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• Doing research, I'll have a few ideas and questions to bring to the table.
• Doctor thinks we're out of options, I'm trying a new med for spasms, but the SCS is probably the only option. I'm just not sure it's right.
• This is pretty much my life right now... icio.us/efofrk
• rt @mjanusauskas The Google Chrome web browser is now a year old and still completely inaccessible to screen reader users.
• Feeling slightly better, but still really anxious. Trying to figure out if I can cope w/ RSD as it is now, not like I have much choice...
• Talked with a good friend and I feel better, not so isolated and scared.

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These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• Great bpost about healthcare reform! icio.us/qf2mhu
• Stick it! Raise awareness of chronic pain by helping us get a commemorative postage stamp - www.painconnection.org/phpPETITION/popsta
• Going to the pain clinic tomorrow. Praying for relief and a way to break this flare.

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These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• @L_Squared Isn't that always the way it goes with those things?
• Had really rough day today. Flare, panic attack, both worst I've had in a while. Definitely not what I wanted to happen. I'm overwhelmed...
• icio.us/cj1500

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These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• I can think of several of you for whom this woulld be a good opportunity. icio.us/diprbu
• Wishing I was able to write effective press releases, lots in Sept. relating to my book, want to promote.
• icio.us/yh5klu
• icio.us/j04xll
• Finished fixing my post about the 30 things about my illness Meme. Turns out the html got really messed up!
• Explains services for connecting LJ and Twitter icio.us/t5qpes

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This is the TEST shipment you asked for

These short little thoughts and links are things I thought and found throughout the day. I'm using a roundabout way in some cases such as the links from
Delicious
Delicious</a>
going to Twitter and the Twitter stuff coming here in a batch summary at the end of the day. This is a temporary method, I don't know for how long it will stay, it all depends upon you, dear readers. Is this interesting, helpful or neither?

• I couldn't find a tweet to post for loudtwitter
• So I posted this.

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In my travels in Twitter land, I foundout about this meme for Invisible Illness Awareness Week. I thought it might be a nice way for me to catch new readers up on what's been going on and also help the long faithful readers to remember some of the stuff that isn't easy to remember. If you have an invisible illness, you can do this too. Look at the instructions further down.

1. The illness I live with is: Complex Regional Pain Syndrome's the current real name, but a lot of us still call it Reflex Sympathetic Dystrophy or RSD, RSDS or CRPS. Any combination will do, especially when you decide to confuse the professors and relatives (smile).


2. I was diagnosed with it in the year: of late 2003 tentatively and definitely in 2005 and it was confirmed again in 2009.


3. But I had symptoms since: February of 2003 when I incurred some unknown small injury. Maybe it was dancing or maybe I tripped off a curb somewhere, we'll never know for sure.


4. The biggest adjustment I’ve had to make is: Accepting that I can't live like my college peers do. Using a walker is hard because they're not designed for blind people to use easily and I know Julio is confused. I guess when it comes down to it, the biggest adjustment for me has been that I am considered severely impaired right now and that is hard to cope with. I still want to cry just thinking about that comment on my medical reports and charts.


5. Most people assume: that my RSD has to be easier than living with blindness. When a guest comes to our church, full of the joy of our faith, there are times when they decide that they need to pray for my vision "right now,, right here". They don't ask about my walker, the tension I carry. To them, blindness is horrible and they wouldn't want to live with it. That's how I feel about my pain, but not my blindness.


6. The hardest part about mornings are: Waking up in so much pain and stiffness. Sometimes I have a little hope that things won't be that bad, but that feeling of hope's crushed like a bug as I move my left foot ever so gently toward the flore.


7. My favorite medical TV show is: Don't have one yet.


8. A gadget I couldn’t live without is: My Victor Reader Stream: When I'm in pain or fatigued and need to rest in bed or do my relaxation, biofeedback, meditation or guided imagery, I have reading material, music, guided imagery and other recordings to help me along. It's a really small device so it's easy to have in bed with me. My runner up is my MSI Wind because it's small and light and works in bed and is light enough when I'm sitting that I can hold it mostly on my right leg.


9. The hardest part about nights are: the pain and anxiety which seem to get magnified in the night. Even worse, there is little I can do about it and I'm not comfortable reaching out late at night.
>

10. Each day I take __ pills & vitamins. (No comments, please) Let's just say it's a lot and leave it at that.


11. Regarding alternative treatments I: use the relaxation/biofeedback/meditation/hypnosis stuff I mentioned above. I also use aromatherapy to help calm my nervous system and make bathing less painful. I sometimes use other herbs and supplements for a variety of things. I've recently been learning about the Emotional Freedom Technique from a good friend and am also trying to learn about EMDR's resource tapping and other methods of healing which won't interact with my current allopathic medicines. Oh, and of course, I did Tai Chi Chuan last semester and hope to do that again as I heal. And last, pool therapy is also helpful.


12. If I had to choose between an invisible illness or visible I would choose: I think I addressed thiis earlier, but my visible blindness is much easier for me than my pain, anxiety, depression and other issues.


13. Regarding working and career: I'm still a student. I have to admit that I'm very nervous about find a career in social work where I can give my all without making myself sicker.


14. People would be surprised to know: The things I say to myself and how alone I feel even when I know that others care about and love me. I don't say this much because it doesn't even make sense to me.


15. The hardest thing to accept about my new reality has been: The pain and the limitations. I once had an amazing adaptive phy-ed teacher who gave me a shirt that said "no boundaries". That shirt meant a lot to me. This boundary is one I can't get over by my self. From a spiritual side, I struggle with this level of illness, pain and struggles because I often feel that a loving God should not allow these things.


16. Something I never thought I could do with my illness that I did was:
    Write a Book


17. The commercials about my illness: Don't exist in my area.


18. Something I really miss doing since I was diagnosed is: Dancing, going to dance class and being able to move freely to the music.


19. It was really hard to have to give up: My dream of proving that a blind person can be a nurse (people always said it would be impossible but I decided that my health wouldn't allow me to be the kind of nurse I wanted to be). In that same vein, I really struggle to put away my self-criticism and (at times), self-hatred which I learned growing up blind even though I had so many loving people who taught me not to think that way, it often shows up in my chronic illness.


20. A new hobby I have taken up since my diagnosis is: Other than increasing my writing efforts, I can't really think of a new hobby.


21. If I could have one day of feeling normal again I would: Get a pedicure, go shopping, give Julio some fun and challenging places to work, go see a movie and either go swimming or out dancing. And, I'd drink coffee without worrying about whether my stomach or heart rate could handle it.


22. My illness has taught me: A lot of things I wish I could unlearn. But it has also taught me that there are times when I can turn my horrible times into something good for others.


23. Want to know a secret? One thing people say that gets under my skin is: It doesn't look so bad. What I look like, even what visual signs of RSD I have, doesn't have much if any correlation to the level of pain I'm experiencing.


24. But I love it when people: are willing to be with me even in the bad times. Some of my closest friends have played on Facebook while sitting with me in a flare, held my hand, hugged me or touched me in appropriate, gentle ways or offered a soft word. When it's not the pain keeping me in my bed but the depression, it always means so much when friends invite me out, even if just to the cafeteria or coffee. Other friends are there when I have an appointment about which I'm worried. Still others call to make me laugh.


25. My favorite motto, scripture, quote that gets me through tough times is: Any Ronnie Milsap song.


26. When someone is diagnosed I’d like to tell them: Get good treatment that addresses more than just your medications or nerve blocks. Build a strong network and create a toolbox full of coping skills. The best time to get tackle CRPS is as soon as you can. Make sure to learn all you can, without scaring yourself. Finally, get biofeedback if at all possible, you can learn techniques which can really help with the temperature of your limbs which are affected, and have tools to manage the stress to prevent or decrease flare ups. And last but not least, if you can't handle therapy on land, ask about therapy in a warm therapy pool, it might help you make progress you wouldn't be able to make on land.


27. Something that has surprised me about living with an illness is: How quickly people look for ways the CRPS is my fault. I think blame is one of those things anyone might use to find some way of handling the fear that they will go through what we do. In most cases, I don't think it's intentional but it can still hurt.


28. The nicest thing someone did for me when I wasn’t feeling well was: It's honestly hard to rank those types of things. Some friends will help me get food from the cafeteria, others sit with me when the pain's bad, my parents do a lot to help me when they can, my doctors obviously do care about me. There are way way too many to list. Some days, it's just the person who finds me when I've gotten lost using my walker and carefully guides me where I need to go. I'll also never forget a friend who came in the middle of the night and got me out of a stressful situation which was making me ill if she reads this, I think she'll know who she is. Finally, my room mates are often there when I need them and they provide the support which can be so critical at night. One room mate got me to try popcicles which are great for when I'm nauseated from the pain.


29. I’m involved with Invisible Illness Week because: I always learn so much from the week and I'm enjoying the activities which have already started.


30. The fact that you read this list makes me feel: Grateful that you took the time and hopeful that it helps you to know me a bit better.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day
free virtual conference with 20 speakers Sept 14-18, 2009 at
www.invisibleillness.com

And if you want to participate in the meme, visit this URL:
http://ow.ly/nhgv

If you fill it out, link back to me or trackback and I'll come read your list!

This one is easy at this current time. The dumbest thing I ever did was not have a good backup of all of my programs and files for my MSI Wind. It crashed big time and it seems like my Dad and I have spent most of today on getting the basics on it. I'm officially frustrated right and it takes a lot ofeffort not to cuss myself out or engage in other mildly self-distructive behaviors (most of which are verbal, the others are things i do when stressed or flared which I am now both).

Are those of you who liked seeing me come back to blogging still happy now that I'm writing angry?

I can't resist sharing a tastelessly funny thing I discovered recently. Like any vain blogger who wishes for greater success, I was checking around to see if and where my blog posts show up. So naturally, I was googling keywords I thought might be ones my posts would show up under. Anyway, naturally, my first keyword I googled was Ketamine to check if my post about
Ketamine, CRPS treatment and blindness
showed up and how many pages of results it would take to find my post. I know, I know, so vain, but I put my heart and soul into that post and actually was more vulnerable than normal. I was curious to see what was going on in those arinas.

So anyway, here I was, Googling the word "Ketamine". The first sponsored add is for Special K and meal planning from the serial makers. Special K has become somewhat of a joke in our family ever since my Ketamine infusions. See, we learned that the street name for this drug is Special K. This knowledge is really only helpful in regards to laughing at unintended associations between products or laughing at "Special K bars" at the church bake sale but seeing that highly ranked ad really gave me a laughing boost.

On a more serious matter, I wanted to discuss some of the after-effects of Ketamine for me. I think the biggest problem for me was that I experienced many side effects Some expected, some not, after the infusions. I expected muscle weakness, heat intolerance, nausea, headaches and fatigue. What I didn't expect was that after the higher doses of Ketamine, I had trouble with an important task. Basically, I had trouble with spacial reasoning. When trying to eat pancakes at McDonald's, I had trouble imagining the plate and finding the pancakes on the plate. If I was asked to get out of a chair and walk to the door, I had trouble knowing where that chair was when I walked back. My tactile discrimination got better quickly; once the infusions were shut off at the end of the day I was once again able to recognize my dog's fur as feeling like a Yellow Lab's, and even though I couldn't read Braille during the infusions, I have no problem with it now. As the drug's effects decreased I could once again feel and recognize Braille, opperate my technology and describe a task with multiple steps (like how to wrap my heat pack around my leg), and feel that I described them with ease. During the infusions, I could talk and explain these things but I felt very uncertain.

Another big problem has been that I feel like my anxiety has worsened. I also notice that the aches and pains I had before worsened too. I'm now in the process of trying to find out why these other pains which I know aren't RSD are happening.

That said, I still feel that I made the correct decision. The challenges I face as a patient are unique, as they are for each patient. I am still glad that I chose to go ahead with the treatment. If I didn't, I would never have known whether it would have worked. I wouldn't have met the people I met there. I wouldn't have learned more about myself and my RSD. Even though, for me, the Ketamine treatments didn't help my pain, I do believe that the professionals and patients I met did help me.

I want to stress that this post isn't meant to blame anyone, in fact, I highly recommend the doctor I saw for the infusions. It's also just one person's experience. I've heard good things about the Ketamine treatments for patients with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. If you're considering the treatments and you feel they are something you want or need to try to relieve your pain, by all means learn what you can about the treatments. Ask questions and take control of your health care but don't base your decision on my experience. I had several issues which complicated my treatment. Also, I still think that having this treatment was the right decision. Even knowing what I do now, I wouldn't go back and change my decision. My treatment was given in a very safe way and the risks were minimized. Unlike some of the more invasive treatments (Spinal Cord Stimulators), the side effects generally don't last long and can be easily managed. I didn't have the risks of surgery or spread of my RSD from the surgery.

All of that being said, I do hope this post is helpful in some way. I know that writing about this experience has been helpful for me emotionally.

One last shameless plug: If you're new to my blog or to RSDS/CRPS, please consider checking out my book. It's available in print or electronic download at
Nickie's Nook: Sharing the Journey
the book shares a lot of my story and experiences with RSD and I donate a portion of proceeds to chronic pain and Guide Dog organizations. The regular print and large print copies are available for $16.00 and the electronic (accessible) version is available for $9.00. It has many different chapters which don't have to be read in chronological order so it's great if you're riding the bus or have to wait in doctors' offices. I mention this because the book includes brief information on CRPS and its treatments. It might be helpful if you're curious.

I've been struggling some with the concept of acceptance lately. I haven't written much about this, but I seem to be getting sicker and sicker and no matter what I do, I am afraid I will never feel or function better. I've started to feel very depressed again, angry that I'm still in pain, fatigued and anxious. That plus the imbalances I've started to have in my body (thyroid and a few other things and possible Fibromyalgia on top of my RSDS/CRPS (that hasn't been diagnosed but it's hard to deal with nonetheless). It's hard to feel acceptance, especially because I have associate acceptance with giving up. I don't wanto give up and accept that my body and life are the way they are.

So anyway, in my work with guided imagery and biofeedback I've been gently working on helping my body and mind to heal. I've been working with a CD called"Reduce Stress and Anxiety". I got it from
Health Journeys
but his site is
Success World"
.

Anyway, I've started to realize that I can accept my body, my life and even my faith and what I feel God is doing to me even if I don't like it. I can give my body love, care and acceptance without giving up my desire to improve my health, life, relationships and mental health. I don't know what this means yet, but it's an interesting breakthrough, even if not an easy one to understand.

Lately in my life, there are two topics of conversation which inspire a ton of questions. The first is my Guide Dog, Julio and the second is last month's Ketamine infusion. Most people have the same question or some variation of it "So what's it like to be on Ketamine when you're blind?" Even doctors are curious, even the doctor who did the infusions was. I've written before about the fact that it's rare to find another patient who's blind and has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. Therefore, I'm probably one of the first patients to do this treatment as a person with a visual impairment. My goal here is not to say that all blind people will experience the same things I did, but rather to share my experience so that patients and doctors will have something to think about should others need these treatments. If I know anything about CRPS/RSDS, I know that it is unpredictable at best and that each patient may experience things differently in the course of their disease. My hope is that the next person who receives this treatment won't go into it like I did, afraid and unsure of what I might experience.

I must add one more disclaimer. Although my outcome wasn't what I hoped for, I know that others have had wonderful outcomes with this treatment and from the clinic I went to. I sincerely hope that if you're considering this treatment, you won't base your decision about whether to receive the treatment on my writing in this blog.

Uncertainty

One of the things with which I contended as I contemplated treatment was uncertainty about what to expect. I'm the kind of person who needs lots of reassurance and to know what's going to happen to her. But since my doctors had never given Ketamine to a blind person, they could only give me information based on other patients. Everyone who goes through medical treatment feels some uncertainty about medications, treatments, side effects and the effectiveness of the treatment they choose. But one of Ketamine's well-known properties is that it causes visual hallucinations and, no one really knew what would happen if I underwent a therapeutic Ketamine infusion. I tortured myself with thoughts of not being able to stop hallucinating or becoming completely unglued and unable to function. Looking back on those thoughts now that the treatment is about a month behind me, I realize that that wouldn't happen with a treatment which doesn't actually put one into a coma, but with my anxiety issues, I was very good at inventing frightening scinarios.

Other Concerns

We had a few other concerns, specifically my blood pressure and my anxiety during the treatments. My primary care physician suggested a protocol I could follow with my blood pressure medication, but fortunately I never needed it. My anxiety was more of a challenge, however.

The Ketamine Experience

I know you're curious about what the treatments were like. It's important to understand that the doctor giving the infusions is very safety conscious (which I prefer). So before they hooked me up to the Ketamine, we had several tasks.

The first is something I can't believe I'm discussing openly. Once I'd signed paperwork and my parents had signed insurance information and a form stating that if I couldn't make decisions, they would, I headed for the rest room. One of the things they have all patients do was to wear Depends because people react differently on Ketamine. To be honest, I never had that kind of trouble, but wearing the Depends made me worry about the potential for relieving myself inappropriately for the next three days.

Once that was over, I was taken back to my little treatment room. The rooms were nice but small and they had small gurneys which were pretty short for me and my long legs. They used some kind of wedge to elevate my legs since laying down with my legs elevated is the only position I find remotely comfortable. The first day I had an IV put in. The doctor tested my pain thresholds and then gave a small amount of medication to manage anxiety and Ketamine's side effects . Once I began to feel the medication working, the infusion was started.

One of the things which surprised me was that I didn't feel the Ketamine right away. As I've said, I didn't know what to expect, but the doctor explained that it would be about fifteen minutes before I'd be able to feel it. It's hard to describe the feelings I experienced while on Ketamine. I think the most important thing was that the sensations and hallucinations I experienced were mostly body based. I frequently felt as though I were wrapped in tin foil or foam, depending on the minute. I sometimes saw colors, but I'm not as convinced that these were hallucinations so much as sunlight hitting my eyes and other objects at various angles and my expecting to have a visual hallucination.

Another sensation I often experienced is pretty tough to describe. Mainly, I found that I experienced energy and vibration. People talk about auras or "being in touch with the vibrations of the universe". As a Christian, I struggled to understand that concept but I started to understand it better while I was drugged up. I don't wish to go into the theology of this right now, however it was quite an experience.

One other problem I had was anxiety and disorientation. It was easy to feel scared, lost and disoriented, especially when sensations were different. At higher doses of medications, even my hearing became affected. Music, speech and other sounds sounded like they were coming through tin foil or wax paper. Finally, my sense of touch was affected, for example, Julio (my guide dog) is a yellow lab with soft furr, but he felt more like a coarse haired German Shepherd. Needless to say, all of these things were quite alarming for me.

Solutions

You're probably wondering how I handled these three infusions. I found that little things made a huge difference. Here is my list of things I found helpful and would recommend to anyone going through these infusions, but especially someone with a visual impairment.

• Touch: One of the most comforting things for me was to have someone touch or hold my hand. I don't have RSDS/CRPS there so it caused no pain. I wouldn't normally ask for that kind of thing, but Ketamine decreased my inhibitions. A touch on the hand helped me feel more grounded and safe.

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• Knowing I was safe and that people understood my disease. This is helpful in any part of life, but having medical professionals who spent three days with me allowed me to learn more about my pain and other challenges. Many things I thought were odd are actually part of my disease and it was helpful to understand this. I also found that I learned so much from other patients and I feel a bit less alone now. That sense of knowing that other people are going through similar things and I'm not alone was therapeutic in itself. This gave me hope during the infusions.


• Mouth swabs: Since Ketamine is an anesthetic drug, it isn't safe to eat or drink before or during the infusions. The clinic hadd lemon flavored mouth swabs to help with the dry mouth.


• Chap Stick: Again, this was something I never would have thought of but it did help my dry lips during the infusion..


• Eye drops: For some reason, Ketamine seemed to keep my eyes open which is something I don't do because of my tear ducts which are underdeveloped. I needed my eye drops more than usual.


• Lavender essential Oil: I get it in a Roll on and use it to help with sleep problems and anxiety. Since I could not take meds for panic attacks, the Lavender really helped if I got freaked out.


• A
  Heat pack
  For some reason Ketamine made my spasticity worse. These heat packs are extremely comforting for me.


• A prayer, a friend and a kind word: Need I say more? I am so grateful that both of my parents were so supportive during the whole week, but especially during the infusions. They frequently acted as my hands and feet when mine were too unsteady.


• Julio: I am so glad Julio was with me the whole time. His presence was healing and comforting.





Conclusion


I'm planning to write more about Ketamine's effects in further posts, but I hope this helps patients and doctors understand Ketamine and blindness. I also hope these writings are useful to the larger RSDS/CRPS community.



Resources


RSDS/CRPS Treatment Center
Where I received my treatment. I can't thank them enough for their kindness and caring.

RSD Foundation

RSD Hope

Reflex Sympathetic Dystrophy Syndrome Assocation

I have to confess that I've been avoiding writing here for the last few weeks. It's hard to confront my feeling of disappointment and confusion on what to do next.

As some of you know, I didn't just go to convention while down in Florida this July. I also spent some time in Tampa at the
RSD Treatment Center
for a three day course of four hour Ketamine infusions.

I need to say first that Dr. Kirkpatrack and his assistants were wonderfully compassionate and caring. It's very clear that they care about their patients, keeping them safe and giving them their lives back. As I write this post, I want to make it very clear that I don't blame anyone, and that if asked, I would still recommend this center if someone asked me.

I also want to say that because of the unique problems with RSD and the unique aspects of Ketamine, it was made very clear to me that the outcome of the treatment would be uncertain since I'm the first patient who's blind doing this new treatment. All of that being said, I have to be honest that my pain feels no better than it did before I went for treatment, my anxiety is still a bit more intense than before the treatments, my sleep hasn't remained as good as it was during the three days of treatment and so I am pretty disappointed. The two things which were good from this treatment were an improvement in my depression and some relief of the pain I still have in my right foot from the surgery in June.

Even so, I gained other benefits which were not from the Ketamine itself. Since this treatment center deals only with RSD, I got to meet other patients with this awful disease face to face and through hearing their stories and talking with the doctor and staff at the treatment center, I learned that many of the weird things I experience aren't something I experience alone. It helps to know, for example, that if the pain I feel if someone touches me sticks around, it's not my fault and it's something others with RSD exxperience. I made some new friends and I gained so much from hearing their stories. I'm so gladto have that experience to look back on.

Those benefits are what I am trying to focus on. I still need to write more about so many things, but it's going to be bedtime soon. In addition, the adapter for my MSI Wind died and since it did, I have to use my big laptop until I get it back. That's more painful to hold in my lap. Hopefully the new aadapter will come in the mail soon.