Surgery

Surgery #3 is scheduled for June 16th. It will be a full tarsal tunnel release and nerve decompression. I will be doing this before the SCS and leaving that as my last option. I'm nervous, scared, excited, and every other emotion you can name.

I'd rather not spend my summer before graduate school on crutches and in rehab, but duty calls.

Triumphs

"There's always more to want, to accomplish, the never-ending seduction of the material realm. Resist this gimme-more fixation. Instead, pledge to value even the tiniest of triumphs. That's what the art of living is about." -- Judith Orloff, M.D.


Go me! I got out of my funk today by spending some time this afternoon with my dad and my puppy outside on a beautiful spring day in New Jersey. It's always so gratifying to spill my fears and sadness to my father because he has this immaculate way of truly, and I mean truly, empathizing with me. It's as if he leaves his body for the moment and really enters my world, feeling what I feel to the best of his abilities, and then giving me some good advice. He doesn't judge... just understands. I wonder if I will EVER be able to thank him enough? He also let me do a little retail therapy, :-) and all of us ladies know that never hurts!

I see my McDreamy tomorrow morning to discuss, and most likely schedule, my next surgery and all that comes with it (good and the possible bad as well). **deep breath**

Wheelchair

Wheelchair

By: Olivia Wolf


You may have bought it
But I’ll never sit in it
And I’m sorry that you wasted your money.

I’m too young to give in
I still have some fight in me
I’ll walk until I fall and then I’ll stay inside
But I won’t let you push me.

I’m not being foolish or stubborn
I’m twenty-three and I’m strong
And I’m telling you now,
I won’t let this illness own me.

Restless

Restless- unquiet or uneasy, as a person, the mind, or the heart.

That's me lately...restless. Sometimes, I feel like a prisoner in my own body. Actually, I always feel like a prisoner in my own body, but there are times when it is more apparent that this isn't the life that I would choose to live. I haven't stood up for more than 10 minutes at a time without severe consequences in... I don't know how long, but it's a loooong time.

Finally, I have learned how to circumvent severe, firey pain flares! Here's the secret.... always sit. Basically, do nothing that involves standing and walking for more than a few minutes :-/ I never want to have a pain flare again, but I can't stand living like this. I feel like a useless blob of a failure. Well, I'm not a failure, I guess. I have graduate school and a great career helping others and changing lives in my near future, but besides for that, I feel like a useless blob. I move from couch, to chair, to floor, to couch, to chair....

Do you remember that game you played when you were a happy, naive child, musical chairs? The one where you walked around a row of chairs while music played, and when the music stopped, you had to grab a chair or else you were out of the game? That's my life. If I can't find a place to sit, it's game over. That is why I have been accustomed to sitting on floors no matter where I am. You lose the possibility of modesty when you live a life with RSD. My survival is based on finding somewhere to sit.

I love my life, but there are times when I really hate what I have become physically.

There is good in today, and I will seek it out.

Anger

Anger seems to be the emotion that arises most these days. I'm over sadness, fear, and all the accompanyng emotions that come with disease and illness. I can't say that I am angry this happened to me because of all the indispensale lessons I have learned, but I am angry that it's not over yet and that I am in this state of limbo trying to find remission.

When I am feeling this way, I usually recognize it, talk to someone about it, and let it run it's course. It only takes minutes for me to get back to reality and live the day. I spent too many days being angry, sad, and fearful when this first happened to me several years ago. I wasted a year and a half of my life...maybe even more. Now, that is something to be sad about.

Don't miss any moments of joy. The past is the past. Move forward.

To Park Or Not To Park? That Is The Question.

I finally received my handicapped parking decal in the mail this week along with my identification card for my wallet. I've used it once so far, always opting out of the handicapped spot if there are other semi-close spots available. It all depends on how I feel the moment I am looking for parking... I need to lean into this, okay?! Sometimes, I think, "What if someone comes along with worse pain than me after I park?" It's silly, I know, but I can't help the fact that I worry about others a lot, even if that "other" may or may not come along while I am hurrying through a store.

I think it is important for those with chronic illness to understand that we have to take care of ourselves first, and that it is not based on selfishness but rather self-preservation. How can we help anyone else if we can't help ourselves? This is something that has become a daily reminder for me. We can take a good look within ourselves and know whether or not our motives are based on selfishness, laziness, a need for attention, or a need to play the victim. If not, then we need to take the proper steps in order to preserve our health, mental, emotional, spiritual, and physical, and manage our diseases.

Take care of yourselves, and I will do the same.

Updates!

***Before I begin this entry, I must say a larger than life thank you to Sophie, a brilliant, loving woman and a great great friend. I would advise everyone to read her comment on my last post just to see how lovely of a woman she is. Sophie, you have been a great catalyst in my recovery process, and I could never thank you enough.


I haven't written in a few days because I have been having some full body pain that includes my arms. The pain is mainly sensitivity that is accompanied by a great aching feeling. A HUGE apology to any e-mails that I have yet to reply to :-(

Okay, so updates... A week or so ago, my father sent my high resolution MRI's that I received at HSS to a very respected doctor to take a look at. He, in turn, sent them out to Stanford to have some former colleagues take a look at them. Each doctor agreed that the scar tissue in my right foot IS impinging my nerve, and that it needs to be removed if I ever hope to be in remission (which was an uncertainty again by the time I entered the hospital in April) as opposed to just covering up my symptoms. Well, this means that we have to sit down with my surgeon this Friday morning to decide whether or not we should have the surgery first or have the SCS put in first. It would be a great idea to put the SCS on hold and not put a foreign object in my abdomen/spine if my RSD can be eradicated without it. Decisions, decisions...

It's so easy to catastrophize with this disease because of it's uncertainty, but I fight every moment to not create that unwanted stress. I trust McDreamy, and will wait to hear his decision on Friday rather than catastrophize my way through the next week. I purchased the only RSD book I could find in bookstores this past week, Living with RSDS: Your Guide to Coping with Reflex Sympathetic Dystrophy Sydrome. I thought it could be fun to read. Education is very very important when you have a chronic illness. I would advise everyone in similar positions to research until you cannot research anymore. It will certainly help with coping, treatment, and management of your illness and can help you gain a sense of healthy control over your life.

Questions, Questions

I slept 11 hours last night. The cocktail of meds I consume daily are taking a lot out of me, but it's better than using a wheelchair, which I know I would have to if I stopped taking them. I'm flaring a bit today, but the burning is only from my knees and down. Score! It's funny how mindset shifts to experience burning from only the knees down as exciting. Hey, I'll take it versus burning from my hips down!

I'm struggling a bit in finding a relationship with God. I'm reading a book right now by Alan Seale, called "Intuitve Living: A Sacred Path," and am really enjoying it except for on statement, which is the root of my struggle. "As human beings, we yearn to experience our wholeness within and our oneness or sense of connectedness and belonging to something larger than ourselves" (Seale, 14). I don't have that yearning AT ALL, and I guess that is where my struggle begins and ends. I am perfectly happy within myself and my own life. Yes, this disease sucks (for lack of a better word), but I love my life, and am more than happy with every aspect of it minus my disease. However, my disease has opened my mind and changed my life in many ways for the better, so perhaps I am happy with my entire existance. Although, I wouldn't mind an end to the pain...

What happens if I don't have a yearning for a connectedness with something larger than myself? What if I feel like nothing is missing in my life?

I don't know... but I'm still trying.

The weather is perfection today! Just another reason to be happy :-)

Use...ful?

Yesterday's entry was inspired by my current struggles with body image/self-confidence/self-worth due to this rechid disease that sucks endless amounts of energy and life from someone who is battling it each and every day. Pain flare after pain flare, deterioration after deterioration, and failed treatment after failed treatment can leave one a bit morose, and sometimes, it can be a struggle to keep one's head above water.

I'm in this sort of limbo trying treatment after treatment in the hopes that I may recover or at least find some sort of pain relief before I enter graduate school this fall. I attend an average of two-three doctor appointments a week right now, so getting into any sort of routine work or volunteering is nearly impossible. No one can count on me because I never know when I will be entering treatment again or having surgery. I must say it makes me feel slightly useless, especially because of the fact that I know I have soooo much to offer, but am too sick to be of any real use. That can do a number on the self-esteem for a goal oriented girl like me. Even though it will be grueling, getting back into school this September will be a very positive step for me. One step closer to helping others who are suffering for a career, and what could be better?!

I had yet another dream about running last night, but strangely, it was a positive dream. Usually, I am running in the condition I am in now, which means I am experiencing a tremendous amount of pain and fear. This time, I dreamnt that I was running my first road race since coming back to running, and I won after only a very short amount of time training. My mom and dad, my biggest supporters in all of this illness experience, were there to see it. Interesting...

I am quite drained today after having a few days of activity (aka. leaving the house) under my belt. I'm doing my best to listen to my body, although it means doing more of what I hate... sitting around :-(

Tomorrow will be a better day! I can feel it!

I Guess It's Time

I don't talk about this openly. Why? I don't know. Embarassment perhaps? But there is NOTHING to be embarassed of. I think it is important to address this issue because it seems to be common amongst those with chronic illness/chronic pain/chronic disability. I am alluding to negative body image. "CID (chronic illness/disability), with its impact on physical appearance, functional capabilities, experience of pain, and social roles, is believed to alter, even distort, one's body image and self-concept (Bramble & Cukr, 1998; Falvo, 1999)." This is all part of the psychosocial adaptation to chronic illnes/disability. Successful psychosocial adaptation includes the acceptance and transformation of an altered body-image and self-perception, while unsuccesful adaptation may lead to a number of psychiatric disorders, including depression, anxiety, and even eating disorders.

I have struggled with an extreme difficulty in accepting a new self-perception, which has created negative body-image and, at one point, an eating disorder. Thankfully, my background in psychology and sociology kept my head above water and had me seek out the help of a therapist before the disorder became too threatening. I went from an athlete for the better part of my life, to someone struggling to do what makes us bipeds and different from the apes...stand and walk. No wonder I have issues!

I no longer struggle with disordered behaviors, but the negative body-image still creeps up on me on certain days. It is difficult to fully recover from such thoughts/behaviors because of the unpredictablity of my disease. Livneh and Antonak hit the nail on the head in their publication, Psychosocial Adaptation to Chronic Illness and Disability: A primer for counselors, when they say, "...the insidious and variable course of these conditions is fraught with intermittent periods of exacerbation and remissions, unpredictable complications, experiences of pain and loss of consciousness, and alternating pace of gradual deterioration."

A chronic illness can creat chronic negative body-image and a multitude of psychiatric disorders, but there is hope for all who suffer. Please, if you are experiencing any type of mental anguish, talk to someone. Enlist the help of a professional, or if you cannot afford to do so, talk to someone you trust. Whatever happens, do not hold your anger, sadness, and disappointment in. I will be happy to listen, so feel free to contact me if you need someone to talk to.

My hands and arms hurt from typing (silly RSD), so I must go now.

All my love,
Maria

Stimulate Me

First I would like to say, thank you tammy and swimfree for giving me your opinions and personal experiences with God. I love hearing from others, and I really appreciate you taking the time out to educate me and put a different spin on things. Your words weigh heavily on me in my search for a relationship with God. The more I know, the better :-)


More updates: I have been given a stronger narcotic to help manage my pain. I am on a very low dose vicodin right now and it is doing nothing more than take a very little bit of the edge off. It is still too difficult for me to stand for more than a few minutes. Also, I am going for a trial SCS procedure on June 9th, and if it can a good portion of my pain away, I will have the more permanent device implanted shortly after. I hope it works! I start graduate school in September, and I need some normalcy in my life to deal with such a demanding mental and physical two years. Keep your fingers crossed!

I am continuing to explore a personal relationship with God. Although it is not easy for me to go from not believing to believing and all that comes with it, I am trying my best daily. I am praying, meditating, reading literature on spirituality, and trying to recognize God in what surrounds me every day.

If anyone has a free moment in their day, I would appreciate it more than words can say if you would visualize me healthy. I need all the positive energy I can get, and I would be honored to receive it from those who keep up with my life by reading my blog :-) Thank you, thank you, and thank you some more in advance!

Pain Flare No More

My horrific pain flare is over, :-) and I am slllllowly getting back to what I consider to be "normal" at this point in my disease. At least I can sit down comfortably now, which is always a plus since I am confined to a chair or couch for the majority of the day. Whenever a pain flare occurs, I always worry that this is the pain flare that defines my new normal, and that new normal would involve a wheelchair. The waiting period is excruciating for the soul and spirit, but there is not choice but to carry on with life. Luckily, in my case, the life that I carry on is a fantastic one.

I have been exploring prayer since I last wrote, and doing my research to try to find a relationship with God and a belief structure that suits me. Being science minded (social science mostly), I need to do research before I ever make any decisions, and my experiences with and studies on organized religion in college negate the possibilities of me turning to the typical belief structures. I firmly believe that churches and places of worship are not for God, but for the worshipers to have a sense of community, belonging, and support, and that organized religions are man made and socially constructed (not constructed by God). Therefore, my relationship with God will be personal and nothing more. To each his or her own.

Turning Points

A lot has happened in the past few days.

1.) I saw my McDreamy, and he spent 45 minutes with me going over my ketamine experience, my symptoms, and the options I have left. He is an absolute joy to be around... always smiling this bright, warm, and compassionate smile. He came to the conclusion that I most likely need to have another surgery, he gave me a new medication, and sent me to a pain management center that he works very closely with. I also FINALLY gave in and asked for his signature on an application for a handicapped sticker that I will use when I start graduate school. There is absolutely NO WAY I can through a campus and get good grades at the same time because I would have to be highly medicated on narcotics to do so (and I hate narcotics).

2.) I saw a psychic. I know, I know... why would I see a psychic? Because I love them! They are great fun! Sylvia Brown is one of my idols (that woman is so cool!). Anyway, I stopped into a psychic's shop after I picked Patrick up from work, because I always walk by it and say how I would love to pop my head in. This time, I finally did. I went to get my tarot cards read, but the woman would not read them, because she said she had a message for me. Summed up, she said that I have an incurable disease and I will live a miserable, crippled life in a wheelchair until I am 90 years old if I don't stop with this atheist crap. Yup... she said if I find God, I will be healed. You know me, I'm up for anything as a student of religion (religious studies minor in college). What do I have to lose? Nothing. What do I have to gain? Everything. I am not a fan of organized religion because of my studies. It's impossible to ignore all I have learned concerning power and control, but I will give a personal relationship with God some exploration... and that is what I am doing right now.

3.) I saw my new pain management doctor, and long story short (I have a doctor appointment that I need to run to soon, so I must hurry this entry), I will be getting a spinal cord stimulator in my spine to lessen the pain (I will have a buzzing sensation instead) and eradicate the chance of a RSD flare/spread if I do have another surgery. It sounds amazing to me!

4.) My pain has been tremendous the past 6 days. The burning is tragic, and I worry that this isn't a flare but is now a new, permanent pain level for me. I've been given ANOTHER medication, that should help with the burning over time until I get the SCS.

5.) My puppy is amazing :-)

Off to the doctor!

Family Matters

It is imperative that I dedicate some time to write about my parents (aka. the most amazing people in this world, I'm sure of it).

I've always had a great relationship with my parents, knowing that they do everything for me, and that the kind of parents they have chosen to be are extremely rare in this world. They are so beyond selfless that there isn't a word in any language that can capture the rate at which they constantly put me before everything. But, my stay in the hospital changed my view of them 100% (as if it could get any better), so much so that I am still in disbelief trying to process how two people can be so loving, selfless, and devoted.

After the incident where I awoke in the middle of the night assuming I was dying, I begged my parents not to leave me, and they didn't. My father would periodically leave to shower and catch a few hours of shut eye so he could be the sane one for us, and my mom did not shower, sleep, or change her clothes, or leave my room for five days. She thought nothing of it, and still wonders why I thank her so emphatically. Now, that's a mother...

My father consistently says to me, "We're a team," meaning that I won't have to take on this disease alone. Now, that's a father...

I could go on forever about my parents, but I will save some loving talk for another post. I will just say, "I love you, mom and dad."