Hitting a Wall

It seems like there’s a constant pattern in my life these days…one good day, one bad day. One good night, one bad night. The cycle continues, and it’s so frustrating at times. Sure, it’s better than all bad days, but I usually find myself trying to do damage control from the day beforehand, even on my good days. So if my posts are rather up-and-down, that’s just because my life is one giant roller coaster that I can’t seem to get off of.

After yesterday’s doctor appointment, I felt a renewed sense of hope. I was ready to attempt PT again. I was looking forward to a great future. When I checked my e-mail this morning, things changed. There was a message from my dad, telling me about his conversation with my specialist. I had asked my dad to talk to my doctor because I just didn’t know what to say. Eager to get into my medical business, I’m sure, he gave him a call today. After a rather lengthy conversation with the doctor, these are some of the things my dad told me…

“He was not optimistic about significant improvement.”
“He said, ‘if she was my kid at this point I’d go to [insert yet another doctor, for a different treatment, several hours away from my house], even though she has heard horror stories about it.'”
“His suggestion is to postpone the Fall semester of school.”
“The sooner, the better with regard to treatment.”

Obviously this is a lot different than my original plans. My dad set up an appointment to be seen by my team in mid-October, but it sounds like they don’t think they’ll be able to help. Part of me wants to cancel the appointment and just continue with school like none of this ever happened. I mean, nobody sounds too hopeful about my condition right now. The emotional chaos is tough to handle, going from high hopes of being well again to not being sure if anyone will help me.

The other treatment option that was suggested is one that I’ve been hesitant about for a long time. It’s becoming more popular in the RSD community, but I’m still not sure I want to try it for many different reasons. Travel, money, stories of people getting worse, not wanting to get my hopes up…I just don’t want to try yet another thing if it isn’t going to help. I really think that intensive therapy at the rehab hospital could help, though, but nobody seems to agree.

In addition to being unsure about treatment plans, I’m still not completely convinced that I want to drop out of school yet again. True, I’m only taking one class, but if this is delayed then my applications for grad school could be postponed another year. I was so excited to get back into the classroom and begin learning yesterday, and it seems like it will be an incredible class. Do I really want to give up that last sense of normalcy just because there’s a small chance that I’ll get back into treatment? I’m not sure.

I feel like I’m hitting a wall in every sense of the phrase. Physically, emotionally, mentally…it’s exhausting. Is it worth the turmoil and the letdowns for me to continue pursuing any help? This is why I had been trying to avoid doctors, but the ER trip a week ago sparked this craziness, with each doctor telling me to see someone else. It’s a chain reaction.

As I sit here wallowing in my thoughts, I’m reminded that things could always be much worse. A young girl whose story I’ve followed for years just found out that her cancer came back. I know other people who are dealing with various surgeries, illnesses, and battles that are bigger than my own measly problems. So as my heart aches for them, I’m counting my blessings and hoping for the day when all pain and struggle is gone…for us all.

 

The Breakdown {Adventures in the ER}

[Warning: Not for squeamish stomachs. If reading about bodily fluids and ailments bothers you, stop reading now.]

It all started around 10:00 last night. Well, maybe earlier. Yesterday (Friday) I was feeling pretty lethargic and had a headache all day. That’s not really anything out of the ordinary so I just sort of went with it. The Great Debate that I had written about a few days prior was still going on. Do I see someone about my growing foot ulcers, do I ignore them…what do I do? So I was thinking about talking to my mom about that situation this weekend. Well, I guess things have a way of speeding up the process sometimes.

My mom was sleeping after an exhausting day…well, actually, she got a massage, so that probably made her tired. Anyways, I was in my room, checking on said ulcers. I did some (painful) cleaning and prodding to assess how bad it seemed As I was doing so, blood suddenly began gushing, and I mean gushing out of my foot. I started to panic as scarlet liquid drenched tissues, my hands, and my carpet. I waited for a while, trying to compose myself, but I just couldn’t stay that way all night. I told my dad, who woke up my mom, and soon they were both crowding my very tiny bedroom, trying to figure out what to do. I felt horrible for bothering them but knew I would be up all night worrying if I didn’t do something.

About a minute after entering my room, my mom became dizzy and nauseous. She had to leave, so she was down. Meanwhile, my dad, who is phobic of blood and vomit, had to deal with us. Once she felt better, my mom came to intervene. We talked, I cried, she brought up going back to Cleveland since they know how to deal with me and my RSD shenanigans. I cried some more, felt overwhelmed, and freaked out a bit. Since a drive to the Cleve wasn’t what I wanted to be doing at 11:30 that night, I opted to go to our local ER. I honestly thought I had an infection or something. I mean, it was draining fluids, gushing blood, and smelled downright gross…indications of infection, maybe, right? We gathered our things and were out the door around midnight.

When we got to the hospital, the waiting room was packed. I seriously wondered how that many people could be sick and injured at that time of night. I signed in, went through triage (twice, because they forgot to save all the info on the computer the first time), and waited. And waited. And waited some more. Finally, after three hours, I was called back. After the girl with the sniffles, the woman who wavered between going home and taking pain meds for her discomfort or staying there, the pregnant momma in labor, and the intoxicated man. Oh, and about twelve other people. It was a relief to finally be on the track to getting help. Or so it seemed.

At 3:30, I got myself situated in the small room. In the hallway, the nurses and techs were having all sorts of conversations ranging from the colors of watermelon (which literally went on for 15 minutes) to the crazy patients they’d had, to how they were going to redo their homes. I guess that answers the question about why we had to wait so long. Eventually, a nurse came in and asked some questions. She, of course, had never heard of RSD/CRPS, so I had to explain it to her. She asked me to write it down on a paper towel so she could do some research. I gave her the names of the disorders, along with the website for the RSDSA.  I was happy that she seemed interesting in learning about this painful condition.

After the nurse left, I sat there waiting for about 2 more hours until a resident came in. He didn’t even bother to introduce himself. He just said, “oh, I hear you have an injury, let me see it.” He seemed pretty arrogant, and I didn’t like his bedside manner. My mom asked if he’d heard of RSD. He gave a fake answer of, “oh, uh, medical school…” Just like that, not even a complete sentence. He didn’t know what it was. I could tell, because he focused way more on my headache than on my leg…because he knew how to assess a headache. While Dr. Know-It-All was talking to me, a tech came in to start and IV and draw blood. I have a habit of looking at the needle while they’re poking me, so that’s what I was doing. Apparently this wasn’t good enough for Dr. Newbie. “Are you going to look at me [while I’m talking]?” he asked. “Uh, no. I have to look at the needle,” I replied. I don’t think he liked that answer. The doc and tech eventually left and I remained in my room.

I heard more nurse conversations in the hallway. Two were placing a catheter, one was dealing with a hungry man in the hallway, and the rest were discussing odd patients. Every once in a while I heard them talking about me. “Uh, complex…something, pain something.” They were giving it a good effort, so I did appreciate that. The conversations continued and I listened in. In the time I was in that room, 4 babies were born, signaled by the sound of a lullaby on the loudspeaker. I figured it was either a poppin’ night for births or I had just been there too long. Or both.

At around 6:50, the attending physician came in. He said my blood results were normal and that I didn’t appear to have an infection. Apparently the fluids and the gross appearance are “part of the healing process.” That’s what I had been telling myself for the past 7 months to justify not having them checked out. I guess I was right after all. The doctor said I was free to go, so the nurse came in, pulled out my IV (which had been burning my arm), took my vitals one last time, and sent me on my way around 7:15am, almost 7 hours after we had arrived. No referrals, no instructions, no medications. Just a “good luck.”

7 hours in the emergency room, only to be told that nothing was wrong. I definitely feel like I wasted time and money for nothing, but at the same time, it’s good to know that my foot isn’t going to fall off or anything. It looks like I may be looking into Cleveland again, though, which is good and bad. I mean, it matches up with my last post, because I told my mom about how tired I was and how I am ready to fight for my health. But at the same time, that’s a can of worms I had hoped to keep sealed. Forever. Plus, that would mean missing more school. I guess we’ll just wait and see what happens there.

Well, I think I’ve had enough adventure for the night. I haven’t slept since Thursday night so I’m pretty exhausted. I just had to get out all my thoughts and experiences before I drift off to dreamland! I hope you all had less exciting nights 🙂

P.S. Sympathetic Reflex Dystrophy??? Yeah, that’s what they wrote as my diagnosis. Someone needs to be educated.

Doctor Avoidance

After an 8+ year adventure with various health issues, you’d think I would be totally fine with going to the doctor. It’s just part of life, right? As common as a trip to the grocery store. But that is simply not the case. I hate going to the doctor. Okay, actually I do like it when they can actually help me, but that’s a rare occurrence.

My next appointment for the pain program I was looking into is coming up next month. Honestly, I have been meaning to cancel it for quite some time. They didn’t seem to be too eager to help me. Instead, they gave me a list of 5 other doctors and therapists to see before going back to them in September. They also had some standard treatment plans that seemed to go against the typical recommendations for RSD, which is slightly concerning. It’s not like this place is down the street from where I live, either. No, it’s a 12 hour drive. I don’t think I want to endure that long of a trip, only to be turned away. Again. I had placed so much hope into this program though, so cancelling the appointment seems like slicing the last strand of hope.

I think that’s why I’m so hesitant to set up any more appointments, at this place or elsewhere. I don’t like getting my hopes up so high and imagining a better future, only to be tossed aside or told that there’s nothing they can do to help. My PM&R doctor here turned to the internet for answers, but ultimately told me she didn’t know how to help. The other clinic that I banked on near my house (that administers Ketamine infusions) told me I was too severe to be helped. Cleveland gave up on me and sent me home. The local hospitals don’t know what to do with me, and I haven’t found any reliable therapists nearby. Sure, some people have recommended doctors and therapists, but it’s usually those people/places that end up letting me down the most.

In short, yes, I am absolutely avoiding doctors and therapists right now. I’m not in a place where I feel okay enough to take another risk on someone. The let-down of a bad appointment is tough to deal with, and I don’t want to go through that again right now. Does that make me a horrible patient? Maybe. I mean, I’ve been told that before so it’s not too far-fetched. But I’m doing what I feel is right.

I’ve already tried PT, both inpatient and outpatient. I’ve done OT, Aquatherapy, SEMG, Biofeedback, Reiki, Tunneled Epidural Catheters, a Spinal Cord Stimulator, TENS units, medications…you get the picture. And that’s just for this current flare. If none of those worked, why keep banging on the door of hope, expecting something else to?

Let me say this, as I’ve said before: I am not giving up. Trust me, as long as I’m breathing, I won’t give up. I still believe that a cure is coming soon. If not that, I’m trusting that there will be an acceptable treatment down the line. I have hope, however naive it may be, that I will not be on crutches forever. When the time feels right, and when a treatment/doctor/therapist seems promising enough, I’ll navigate those waters again. I’m still searching for help…looking at ratings of doctors online, digging deeper into their qualifications. I don’t think another trip out of state is in the cards right now, but if someone nearby becomes an option, I might be willing to take a chance. Maybe.

Each person has their own journey. Some spend their lives traveling to different appointments, storming offices until answers are found. Some people choose to accept life as it is and work around their challenges. Some people give up completely, or so it may seem. I think that deep down, we know ourselves. We know our bodies, we know our capabilities. Sometimes, we have to take a break. We avoid, we cancel appointments, we shy away until the time feels right. Sometimes we just need to focus on things aside from the pain, the medication, the let-downs.

And sometimes, that just has to be okay. At least for now.

Pain Rehabilitation Programs {CRPS Treatment Chronicles}

I am a repeat customer of the Cleveland Clinic Children’s Hospital for Rehabilitation. Sometimes my parents joke that they should own a wing of the hospital now with how many medical bills we’ve had from that place! Ha! But really, this has helped me in ways that no other treatment could. There are other pain rehab programs, usually for kids, that have a similar concept so some of what Cleveland does is also seen elsewhere.

The actual rehab hospital is pretty small. There are only three floors in the whole building, and most of the therapy takes place in the same area. There are three main parts of the hospital-the pain program, the baby rehab unit, and the rehab pavilion.

Part of the hospital-as you can see, it is pretty small (apologies for the bad quality of the photo)

I’ve been on the rehab side and in the pain program, but I think for this post I’ll focus on the pain rehab program.

The pain program focuses on using physical exercise to reduce or remove one’s pain. Therapists will take any assistive devices away relatively shortly after a patient is admitted. Sometimes they allow you to go from a wheelchair to using a walker, other times they take everything and have you walk through the pain. If you have crutches, they will probably be removed within a few days. Each case is different, but in general, they try to get you up and moving on two feet as soon as possible. If the pain is elsewhere, say, a hand, they will make sure you use that hand and get it moving again. They don’t really like for the patients to be on many medications, and instead they teach pain management techniques such as acupressure, visualization, and breathing.

In the pain program, you will be with a group of other kids who have similar issues. The groups aren’t usually too large-I think we had about 12 when I was there, which was more than they had had in a while. There is an emphasis on not talking about your pain with others because this can cause the “I’m worse than you” comparisons. They try to get your focus away from pain as much as possible, so talking about it only causes you to be more aware of it.

The treatment team for each patient in the pain program includes physical, occupational, and recreational therapists, a psychologist, a doctor, a teacher, a nurse practitioner, and a social worker. You and your parents will usually have one meeting with the whole team after your second week in the program. During this time you will discuss your progress and what they recommend for you. Sometimes this involves lengthening your stay by a week, other times they tell you that you are well on your way to remission, which is a wonderful moment.

Okay, time to stop rambling. Here is what an average day looks like:

A Day in the Life of a Pain Program Patient

• 6:30-7:00 AM If you are inpatient, you will wake up in a lovely, air-filled hospital bed bright and early. A nurse will probably be hovering above you, trying to find your blood pressure cuff and sticking a temperature probe in your mouth. Once vitals are done, you’ll either be able to catch a few more minutes of shut-eye or you’ll be told that breakfast is waiting. You’ll get dressed, make your bed, and head down the hall to the table for a delightful breakfast,which probably will not even be the one you ordered (because they have a habit of mixing things up).     *Note: If you’re outpatient, you’ll probably still be sleeping at a hotel or at the Ronald McDonald House since you don’t have to be at the hospital until 8am.     
• 8:00 Time for group! An OT or PT will come to the unit and round everyone up. You will then take a quick journey downstairs to the day hospital, where you’ll pick up those lucky ducks who have reached that part of their stay. Once everyone is together you’ll go to the rec therapy gym. You’ll have an hour-long group which changes each day. Groups include goal writing, stretching, circuit training, nutrition, exercise, or whatever else they decide to throw in. By the end of this group you should be awake and ready for a busy day.
• 9:00 This time slot can have a number of possibilities. You could have a group, like music therapy, or school time. You could also have PT/OT or psych. It changes for each person.
• 10:00 Grab your swimsuit and goggles, because it’s pool time! Everyone in the program has pool together, unless they luck out and have a psychology appointment or something. Pool can be scary for the first week, especially if you have sensitivity and water bothers you. Don’t worry, though, because the water is warm and actually feels quite nice once you get used to it. If your first pool day is on a Tuesday, as it usually is (because your first Monday is a bunch of admissions stuff), get ready to get your sweat on. It’s aquacise day. Yes, I did cry on my first pool day because we spent the entire time moving and grooving. It can be tiring but they usually play fun music for you to keep things fun. The other days in the pool are usually spent doing relay races, swimming laps, and doing other exercises. Oh, and if you accidentally get kicked…well, that’s just extra sensory. But that only happened one time while I was there, so if you watch where you are you should be good to go.
• 11:00 After drying yourself off from the pool, you’ll head over to school, PT/OT, or psych. It’s a joy, especially when your stomach is rumbling and you’re eagerly anticipating lunch!
• 12:00 Lunch! The moment you’ve been waiting for since you finished breakfast. Okay, maybe not. But you get an hour to chill and hang out with your new friends while enjoying the most appetizing hospital food imaginable. (Actually, their food really is pretty great compared to most hospitals. Don’t even get me started on how it was my first 2 times there-basically, the grilled cheese was more like a grease sponge.) Of course, you still have to work on your therapy rules, like using that painful hand or keeping both feet on the ground (I got called out for this one quite a few times). When you’re done eating you can chill in the hang-out room, go to your room (really I don’t think they like it when you do this, but I did anyways), or work on stretches (you’ll get bonus points in the hearts of the PT/OT’s if they see you actually working on what they told you to).
• 1:00-4:00 Back to work. You could get lucky and have rec therapy, where you can do cool art projects. You might also find yourself in PT/OT, a group such as mind and body (where you talk about the mind/body connection and smell cotton balls while learning about aromatherapy, for example), or maybe you’ll even be sitting across from your psychologist, talking about your amazing lunch. Chances are, you’ll be doing a combination of some of these things during this 3-hour period of time.
• 4:00 On one day of the week, 4:00 means cooking group! This was my favorite because we got to combine my favorite hobby (cooking) with therapy. Sometimes our creations didn’t turn out quite as expected, but we were asked to at least take a bite of everything. If it’s not a cooking day, you might have family group, where your parents/siblings come hang out and do something with you (unless your name is Rachel and your parents were 3 hours away and therefore didn’t attend. Hey, I was 18 and didn’t care anyways). Sometimes you might make a craft or play a game, and there will probably be some sort of discussion about families thrown in there. On other days there is usually rec therapy or something to do for the hour.
• 5:00 If you’re in day hospital, you get to peace out for the day! Enjoy your non-hospital food and comfy bed. If you’re still inpatient, however, you’ll be greeted on the unit by nurses who are informing you that dinner is ready. You’ll sit down with your buds, talk about the wonderful day (while being sure not to mention the word “pain”), and enjoy dinner. You can almost breathe a sigh of relief, but then you remember-your day is not over yet, because…
• 5:30 Evening RT! Rec therapy time for everyone who is staying at the hospital. You’ll usually play a game or do a craft, and if you’re lucky, some of the kids from the rehab unit will join. It’s fun to meet them and play games together.
• 6:30-10:30 Free time! If your family is nearby then they can come visit, otherwise you can spend some quality time by yourself. Sometimes the kids on the unit will play wii or something. If you’re like me and trying to take classes while in the hospital, you might have some homework to catch up on. If not, have fun watching TV, reading, or wasting time on the computer.
• 10:30 A smiling (or maybe not smiling) nurse will peek into your room, make sure you’re winding down for the night, and ask for your cell phone. Yep, when I was there we were only allowed to have our phones from 5:00pm-bedtime. Maybe they’ve changed that rule…I didn’t like it. Thankfully I had my ipod touch with me and they never took that away! You  might already be asleep by this time from your long day, but if not, you’ll be laying in a dark room so hopefully you’ll drift off into sleepyland soon. But be prepared, because the whole thing is going to start over in the morning.

…Then, if everything goes well and you do enough jumping jacks, untie your shoes every time you take them off, and meet all your goals, you should be smiling, walking, and on your way home after 3-4 weeks of the program! Hooray and high fives for you, because you just made it through some of the toughest weeks of your life!

There have been a lot of people who have been greatly helped by this program. It got me from a wheelchair to walking two different times, so I’m a fan. Well, not really a fan, because it’s a lot of hard work and other garbage, but I love how it helped me get my life back. Despite my less-than-stellar experience in 2012, I had a better one this past August that made me respect the place a bit more.

Wow, I did not intend for this to be so long! Whoops. I’ll go into more detail about the program sometime this week. Hope that helps anyone who has wondered just what it’s like to be in a pain program!

**As always, this is just from my perspective and results/experiences may vary.**

Ketamine {CRPS Treatment Chronicles}

Ketamine seems to be the buzz word in the CRPS community these days. It is a strong anesthetic, often given by IV. It is said to calm and sort of “reset” the nerves, with the goal being decreased pain. People with CRPS can receive outpatient infusions of Ketamine every so often, or there is sometimes the option of a week-long continuous treatment that is done inpatient. Some countries offer a fully comatose week-long infusion, but that has many risks so it is not allowed in the US at this time. There are lots of possible side effects, as well as insurance/cost issues, so it is usually not the first choice of treatment. Ketamine is usually given along with other medications to reduce side effects.

When I was on Ketamine, there wasn’t much research done on it but my doctors were willing to try anything. I was twelve years old and had full-body CRPS. I hadn’t responded to other medications and things weren’t looking great, so they chose to move me to the ICU and start a week-long drip after reading about a case online that had success with it. I was hooked up to numerous wires and tubes, and I was only semi-conscious throughout the infusion. I have few memories of this week in my life, but my family has told me stories. Apparently I acted like a monkey, developed an accent, and went on a rant about Lucky Charms?! It’s probably good that I don’t remember all of that :).

Ketamine and a few stuffed animals on my hospital bed

I had physical and occupational therapy during my Ketamine infusion, and I made some progress while not totally coherent. I think I was less anxious and on-edge, so I’m sure my therapists appreciated that. My pain levels decreased while on the drug but they soon escalated once the drip was discontinued. There was some lasting improvement though- by the end of the week I was able to move one arm and my jaw, something that was not possible before the Ketamine.

Would I try Ketamine again? Maybe. I have my hesitations because of side effects, cost, and the fact that it may not work for me again. Plus, it is hard to find a doctor in my area who is willing to administer the medication. I guess it would take some deep thought before I signed the papers and consented to another infusion of this stuff.

Would I recommend it? Sure. I’ve known people who were helped tremendously by this medication. If you have the proper resources,  and understand the risks, go for it. The inpatient infusions tend to have better success at long-term pain control, at least from what I’ve heard, but I know the outpatient drips are easier to manage and still provide some relief.

Any other questions? Feel free to ask! If you have had experiences with Ketamine, I’d love to know if it helped you or not. The more information we can share about these treatments, the better!

**Disclaimer: I am not a doctor, nor am I an expert on this medication. Please talk to your doctor before making any treatment decisions. Also, this is only my personal experience, not a generalizable description. Results may vary.**