Nerve Block #3 and other things

On Thursday I had my third nerve block plus more ketamine along with it. I woke up that morning with a migraine, so of course I was nauseous going in and I couldn't take anything for it. My mom, because you need a driver, told them about my migraine, so the anesthesiologist gave me something for it through the IV, I don't know what it was. After this block I had a really crazy dream that was just lots of bright and vivid colors that kept rushing by quickly, and it seemed to go on for a really long time. I guess you could say it was some kind of tripped out dream? I woke up on my stomach, as always with the blocks, and usually it takes awhile to become aware of each body part and work them all together as you wake up (it's weird and hard to explain unless you've been through it, but if you have you know what I mean) but this time I was so dizzy ever since I started waking up. Everything in the room kept moving, and I would see things that weren't there. After the required time to be on my stomach, the nurse came over and told me I could flip over. I did, and right after that she had me getting dressed.

Now I still felt really dizzy, but I'm not the kind of person who will say "wait, I don't feel good", but rather just push through and wait til it goes away on its own. So I got dressed, and I barely finished and I just froze, because I felt so sick. My vision went from double to blurry. The nurse came and saw me and asked if I was nauseous, and I said yes, so she brought me a bowl just in time. But then she took my IVs out and wheeled me out to my car, where my mom was waiting. I was still dizzy at that point, and I couldn't even look at anyone directly. Luckily she gave me a clean bowl to take with me. In the car I recovered from the dizziness but I was just really nauseous. I got sick once on the ride home, and then continued to for the rest of the day. I was a mess, I sat on the couch and for awhile kept drifting in and out of sleep. Any time I tried to eat something I didn't keep it down for long. I would try to do schoolwork on my laptop, but I would have to keep stopping because I felt so nauseous.

I'm really not sure what my reaction was from, but it was awful. I don't see my doctor until the 21st so I won't know anything new until then.

I filed with my school's Office for Disability Services finally. I don't think they'll be able to do much for me, unfortunately, but at least having my professors know now and for the semesters to come about my disease might help me out.

My sensitivity in my knees has gotten worse, and I just can't stand it at all anymore. I wear braces on them whenever I leave the house or am going to be on my feet a lot, but I recently bought sleeves that I can slip on my knees the rest of the time, so I don't always have to wear the braces, because they get to be painful after awhile. These sleeves are great for when I'm at home, because they protect my knees from my pants really well. The freezing cold weather is also not doing good things for my hands, I'm afraid. I get random burning pain sometimes in my hands and arms, as well as my thighs, but only sometimes right now. Also sometimes my hands will become very hot or painful to touch.

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Finally, I've been thinking a lot lately about not spending time worrying about things that you can't change; that you have no control over. I've been worried about my grades, for example, because I've had to miss several classes due to RSD, but in the end I realized that there's nothing I could have changed, so it is what it is. I think that's a good approach for anyone to go at life with. If nothing can be done about something, don't waste your time worrying about it, that's what it is. BUT if there's something that you can do something about, then by all means put your energy into helping yourself in those cases :)

My First Thanksgiving Gluten Free

I have to admit, not long after I was diagnosed with celiac disease and processed the initial things, I worried about Thanksgiving and how I wouldn't be able to eat much at all. I worried further when my aunt said she was going to host this year. If we weren't having it in our kitchen, we couldn't control how things are cooked. And I couldn't very well ask her to cook things gluten-free just for me. (Well, I could, but I'm the type of person who would never ask anyone to make special accommodations just for me when there are so many other people involved who don't need it.)

But I am very pleased to say I had 2 platefuls of great food!

I did ask my aunt and uncle beforehand how the turkey would be cooked, just so I would know ahead of time if I would be able to eat it or not and what food I should bring for myself. They decided to cook two small turkeys, making one smoked and one deep fried, which was in a clean fryer with clean oil and completely safe. So that was great! I was able to have some of each turkey. Mashed potatoes were ok, of course, but without gravy, and we had a really delicious cranberry relish with oranges and apples and nuts and chocolate, all chopped. And then I brought my own croissant rolls from a GF store, which were actually quite good. Add some salad, and I had a full plate. I was so pleased, and the only thing that was specifically GF was my bread.

My mom volunteered to do dessert, so she could make them so I could have them. She got all GF pie crusts, and made 2 different kinds of pumpkin pie that I could have, plus an apple pie.

I was so happy that celiac disease didn't ruin my Thanksgiving. I will never let this disease control my life.

RSD Awareness Month

Imagine:

+ the light touch of your pants making your legs hurt so badly that you can't stand it

+ pain that burns so badly it literally feels like you are on fire

+ swelling so that your knees look like lumps all the time, and you can't remember what they used to look like

+ out of nowhere have a part of your body become extremely hot for awhile, and having this happen at least 30 times per day

+ having that same body part get freezing cold in between

+ having your skin always look mottled and marbled

+ having your knees become like jelly underneath you after you've done only a moderate amount of walking

These are just some of the many things people with CRPS/RSD have to go through every day.

RSD stands for Reflex Sympathetic Dystrophy, the name for this incredibly painful, chronic, progressive neurological disease. More recently, doctors started calling it CRPS, Complex Regional Pain Syndrome, which encompasses both RSD (Type I) and Causalgia (Type II) which involves a direct injury to the nerve. It affects the sympathetic nervous system, which regulates things like heart rate and breathing, and sends a constant loop of pain from the brain to the effected body part(s). No one knows why RSD chooses to affect certain people, but it is rare. One of the defining characteristics is pain that is disproportionate to the initial injury. Personally, I know I never would have thought that a simple fall one day would cause me to be in terrible, ever-worsening pain over one year and seven months later. I also never would have imagined that having surgery on that knee 6 months after the injury would actually cause the pain to spread to my other knee.

The disease is baffling, really. The symptoms seem to make no sense. Often times people with RSD are not believed by family, friends, and doctors. They can be accused of making their pain up or exaggerating the extent of it. I did go through times where people, and even one doctor didn't believe me. Other doctors dismissed me, either quickly or eventually, because they had no idea what was wrong with me anymore and said there was "nothing more they could do for me." Many times I wanted to give up, to not face another disappointing doctor's visit. But I persevered because I knew something was obviously wrong with me, and I deserved a diagnosis. Finally, I found a doctor who knew what I had, and had an answer to explain all of my "odd" symptoms.

This is why RSD awareness is very important to me. I don't want others to have to go through what I went through. If my previous doctors had at least been familiar with the symptoms, they could have been able to detect it so much sooner. I want more awareness for doctors badly, but I also want awareness spread of this disease for everyone. It is very difficult to understand what a person with RSD goes through every day (I know I wouldn't have before I had it myself) but with at least more familiarity, the name won't be so foreign to people. If you come across someone with the disease, you can understand what it's about. And with more awareness comes more research and knowledge about what exactly causes RSD, what better treatments might exist, and if a cure is possible.

Birthday meals and lessons learned

Saturday was my birthday, so for my meal I chose a Brazilian steakhouse. It was great to be able to eat most of the same things as everyone else and not have to choose from a limited section of the menu. They even brought me flan for my birthday and they checked to make sure it was gluten-free- it was! So that was a really great meal. My mom also made me a homemade cake that I could eat.

Yesterday I went to the city to see a show. We ate and had a short amount of time after to get to the theater. We decided that it would be faster to walk the 10 or so blocks than go get the car, drive there, drive around looking for a parking deck, and walk out and into the theater. We had to walk quickly, and I pushed myself more than I knew I should, without a doubt, walking quickly. By the time we got there I almost fell a couple times because my knees were collapsing under me.

But the seats were fantastic and I didn't have anyone in front of me, so I was at least able to stretch out my legs during the show, which helped while I was in lots of pain. When it was time to leave, I was convinced to just try to walk instead of having to spend money on a cab, and that we could take it slow. That walk back was the longest walk of my life, and I was to the point of tears several times. My knees hurt so bad and were so hot, and they were like jelly underneath me. Thankfully I wear braces on both of them, which helped give me a little extra support, and I walked bending my knees as little as possible, as I always do when they start to give out on me. This was much past that point, though. I was just so bad off and in so much pain.

Today has been excruciating, because I'm always hit extremely hard the next day as well. And it didn't help that it stormed all during today, because we all know what that means: extra inflammation. Right now as I'm typing this tonight, my knees and legs are of course on fire and almost unbearably painful.

It's extremely frustrating to have things like this happen. At the same time, I'm trying to focus on the positive that at least the show was amazing. I'll try to not push myself well past the point I know I can anymore. The consequences are unbearable.

I do now know with certainty that the nerve block has completely worn off- no doubt about it.

Nerve Block #2 (Plus Ketamine)

Yesterday was my second nerve block. I was laying in the bed waiting for my turn, and my doctor came out to talk to me. She said she decided she wanted to try using Ketamine too, along with the block, in hoping that it would help break the pain cycle more. I agreed, and then the anesthesiologist came out and talked to me more about it. They also gave me an Ativan tablet to try to prevent any bad side effects from the Ketamine, and I didn't have any scary dreams or anything last night, so I think it worked.

The pain relief was about the same as last time, lasting a little longer, though. I still had overall soreness in the joints pretty quickly after, but I've never known if that pain is part of the RSD or not. Early evening I started getting the hypersensitivity to touch back, I noticed when my pants starting hurting again, and then later in the evening the burning was back.

Well, it was nice to have some relief, of course, again. I did have hopes that this one would last longer than it did, though, especially since the Ketamine was used too, and my doctor and the anesthesiologist both seemed confident that it would do good things. But I guess the fact that it lasted longer than the first one is still progress? I don't know. The office called me today and they said they wanted to schedule another block in 2 weeks, so I did. Right now I'm not meeting with my doctor in the meantime, but I am curious to know what she thinks about the length of the effects of this one.

I didn't faint after this block, which was good! I was very careful and ate my food very slowly, so as not to take any chances. The procedure went smoothly again, I just have had a sore back yesterday and today, but that's expected. I felt so out of it for many hours after the procedure, though, and I seriously couldn't walk right and kept thinking I would fall over. But I didn't! lol Maybe that was due to the Ketamine? I honestly don't know, this was my first experience with it.

Updates

I'm sorry I haven't posted in awhile, I've just been busy. Here are some updates.

All is the same, basically, on the celiac front. I went to a restaurant called BD's last week that I have visited before many times and love, and I am so glad I can continue eating there now. I highly recommend it to anyone, including celiacs, because it's a delicious Mongolian Barbecue meal, and they have an allergy zone so you don't have to be worried about cross contamination! They have rice noodles, and list which sauces are GF. It's so great :D

For my birthday meal on Saturday, I chose a local Brazilian steakhouse. I've never been to this particular one before, but it has good reviews online. And I contacted them to make sure the seasonings on the meat are GF, which they are. So it'll be a nice meal that I can eat, and I love going to Brazilian steakhouses because I went to Brazil in 2004 and that was the kind of meals I ate there, so it reminds me very much of being in Brazil.

So far the plans for Thanksgiving are going good. We're celebrating at my aunt's house, and the way she's cooking the turkey is fine for me. I'm also bringing pumpkin pie which we're making homemade and GF, and we're picking up GF rolls for me too. So there should be enough I can have for a meal :)

I saw my pain management doctor last week, and she thinks it's good that the first nerve block worked for 5 hours, so I'm having another one tomorrow morning, and hopefully this one will last longer. She also doubled my dose of gabapentin (from 300 mg 2x a day to 400 mg 3x a day) and I haven't had any problems with side effects from that, which is good. The increased dose might actually even be helping my pain a little bit! It's hard to tell right now if it's the meds working or I'm just on a stretch of good days. I guess time will tell.

I'm going to start looking into meeting with my university's disability office. I keep missing or being late to my first class since I can only park in the closest lot due to the pain, and that lot is so packed that you have to keep circling around waiting for people to leave, and hoping you're in the right place at the right time to get a spot.

I really need to wear gloves any time I go out now that the weather's colder, I think. My hands are super sensitive to the cold. I had mild frostbite in my fingers and toes a couple years ago, and I think that could increase my risk of the RSD spreading to them?? I don't know, I'm definitely no expert. But I want to take as many precautions as I can.

Oh and I told my doctor about my left foot that keeps getting hot, many times a day. She took note of it, and said it's a symptom. I'm keeping my fingers crossed that this doesn't mean spreading to my foot.

Nerve Block #1

I had my first nerve block this morning. The procedure wasn't bad at all and was over very quickly! I was feeling ok after it too so I went out to breakfast with my mom who had to drive me because of the anesthesia. Well I ended up passing out and then getting sick in the restaurant bathroom :/ So embarrassing! I guess it was a bad reaction? I'm ok now though.

My back is only a dot sore, which is good, especially since I had 2 injections, one on each side. The pain is already back, though. It was gone for about 4 hours, which was great. But it's ok, I had prepared myself reading about the procedure ahead of time, and knew it probably would only last a couple hours on the first one. It was nice to extinguish the fire for at least a few hours. I'll talk with my doctor in 2 days on what to do next, probably another block and possibly more physical therapy.

Happy Halloween

Happy Halloween to everyone! It was fun as always to get to see all the kids in their costumes as they came to the door :)

We have a new Super Walmart in town, and my mom needed to get groceries, so I said I'd go with because I wanted to see the new store. I knew full well that I would suffer the consequences later. But the second half of the time in the store, I could already barely walk. I look kind of funny when I get to that point, because I basically waddle/shuffle really slowly. It's not so fun for me though :/ That was a use of a lot of spoons I guess you could say, right?

My left foot keeps getting really hot. I'm not exactly sure what this means, but I'll try to remember to ask the doctor at the nerve block on Tuesday.

Looking forward to getting some relief on Tuesday!

Amitriptyline

I think I sleep better the nights I don't take Amitriptyline. Weird? I'm almost sure of it, though. I didn't take it last night because I remembered too late and the doctor said not to take it much past 8pm because I'll be groggy the next day. And I slept better last night than I have in a week, the last time I didn't take it (because my little cousins were sleeping over). If it's not really doing anything do I need to be taking it?

My nerve block is fast approaching. I'm not really nervous about it though. I mean, I'm a little freaked out about having a giant needle injected into my spine, but I'm not nervous. I think that's a good sign :)

It sucks that whenever I push my knees more than the bare minimum (for example extra walking) I have to pay the price and then a whole lot more. I've often had the internal struggle that I assume so many with every type of chronic pain have. The struggle that, do I do what I want to and attempt to have a more normal life and not let this thing beat me? Or do I give up on fun things and stay resting in order to not experience any extra pain? It does suck that I can make a decision one day to go to the mall, go through having pain and needing to take breaks, but still make it through, only to have terrible pain that night and the next several days. Everything's give and take. No one knows how many little decisions you have to make each day with big impacts. Do I take the stairs up to class or do I go out of my way to take the elevator?

I would say, though, that there's never one right or wrong decision. You can't let the disease take all the fun out of your life, but you can't live with that much of an extreme amount of pain either. Ah the ambiguity of it all... :/

I'm feeling much better today and was able to get some working out in, which just makes me feel better overall. I don't know if one day the RSD will spread to my arms or hands, I mean it already spread from my left knee to my right one, so I realize the importance not taking anything for granted. Now I can do things like boxing which is still a cardiac workout that is ok on my knees, but maybe one day I won't be able to. Or maybe I always will be able to too (looking at the bright side :) ). Either way, I know the importance of living each day doing what I can, so I won't regret not doing it if I can't later. Does that make sense?

As my knees have continued to get worse over the last year and a half, I have noticed all the things that I took for granted before that I now can't do. Like kneel down at all. Or be able to go the mall without horrible pain for the next few days after. Or be able to wear whatever shoes I want. I could go on and on, but you get the idea.

Sometimes I do feel bad for myself when I'm bound to the couch, missing the freedom I used to have that was taken from me. In this way it's very similar to celiac disease as well. And I'll admit that sometimes I do feel bad for myself with that too, wishing I could eat birthday cake with everyone else or be able to order whatever I want from a menu. But I can't let these feelings stay too long. And neither can you. If you dwell on the past, you miss out on the present. And that just leads to more lamenting of the past gone by, with regrets this time. It's a horrible cycle that no one should live in. I'm not saying it's easy to focus on the positives when there are things you love that you miss out on now. It's something that takes focus and determination. But if you want to be happy, it's possible for you.