Chronic Pain...

Living with chronic pain is a constant struggle. There are so many aspects to pain that you would not think about if you aren't dealing with it. For those who experience pain as a short term thing, as something that is transient, consider yourselves lucky! It is a miserable experience....Having said that, I have learned a lot from having to cope with pain on a daily basis for the past 6 years. I have been in pain for 8 years, but the first few years I was not sick every day.

Since a lot of my pain is centered in my mouth and throat, it is difficult if not impossible at times to do some of the most simple things, such as eating, talking, drinking, etc. Some of the things we almost always take for granted. Being a therapist, it is quite challenging to talk all the time while dealing with constant pain that feels like I have strep throat every day. I often have to go to the hospital because I am severely dehydrated due to an inability to drink water. Imagine having strep throat for three people...having open wounds that cover the inside of your mouth....that descend down your throat and esophagus. It feels as though there are thousands of tiny men constantly cutting the indside of my throat with scissors. And trying to eat or drink? Awful. Feels like pouring acid on the open wounds. Yet if you don't drink, you become dehydrated. Necessary evil.

I also have pain in many other areas. Such as joint pain in my ankles, knees, wrists. Muscle pain from fibromyalgia. Pain in my ribs occassionally from costochondritis, which is inflammation in the cartalidge in the ribs. That feels like all your ribs have been crushed. I have recently struggled with pretty severe tendonitis in my achilles tendons, in my right knee, my right thumb/hand, and my left wrist and arm. Tendonitis is an annoying pain to have amongst all the other pain. Migraines, sores on my skin that throb and burn, etc. It is definitely not fun. It seems like every day there is something that hurts. It doesn't feel right.

I was going through the drive thru at Starbucks today, and randomly thought: I wonder what other people feel like when they are healthy? I am sure what I experience as "healthy," or feeling pretty good is still not equivalent to what a "normal" or healthy individual feels when they are not sick or in pain. Unfortunately, one can never truly feel what it is like to be another person. But I often wonder how other people's lives would change if they suddenly had to deal with chronic pain tomorrow. Ask yourself that. What if tomorrow you woke up, and nothing was the same? You just felt sick. And for years and years, it escalated to the point where you could no longer work, you had to move away from where you had built your life, some of your friends disappeared, you are more and more isolated....Imagine you are no longer the "you" that you have worked so hard to be. Every day you are sick, fatigued, can barely walk at times from being so exhausted. The pain is horrible all the time, always there. You are constantly taking pain medications and other prescriptions, all which come with side effects. Your entire life revolves around this disease. You look in the mirror and no longer recognize the person staring back. That is what my experiences have been like with chronic pain. Of course, there is more to it, but it's difficult to explain it in a way in which another can understand what their life would be like if they had chronic pain as a part of their daily life.

Just like everything, chronic pain affects everyone differently. As difficult of a journey as it is, and as much as I would not wish this on anyone....I can say that I have a choice in terms of how I view my experiences in this world. I can choose to stay negative, and to feel like nothing in life will ever be worth living. Or I can choose to say yes, this is a difficult journey. Yes, it is a constant struggle. But I will remain positive at the core. I will not take things for granted. I will appreciate those who play supportive roles in my life. I will enjoy everything that I can, because let's face it. There is ALWAYS someone worse off than you are. I try and remind myself that whenever I have a really tough day. There is someone in this world who is suffering more than I am, someone who has lost someone they care about, someone who is more ill than I am. Someone dying. I know that's not fun to think about, but it reminds me of how lucky I am to be here. And it allows me to take a positive stance and reach out to those who may be suffering as well. I want to be able to use my experiences to connect with other people and to create a voice for those who feel unheard. I have said before that being in chronic pain is bad enough, but then to feel this pain and also feel unheard is even worse. Take a moment and be thankful for what you do have. And if you are lucky enough to have a life without chronic pain, take advantage of those little things that you may not be able to do if you were in pain.

Past Journal Entry #2

This is another excerpt from my personal journal. Again, I stress how difficult it is to write these entries for the world to see. This entry is dated September 9, 2011

I am starting to decrease my steroid dosage again. I cannot believe I have gained ALL of the weight back that I had previously lost so quickly. I feel like I made so much progress, was starting to move forward. And now I feel as though I have taken many steps back. I am so incredibly lonely. I have never felt this isolated...ever. It makes me cry and feel so depressed. I am so tired of this disease controlling my life. I feel like I want people to hear my story-Iwant to share my experiences with people who are willing to listen and who want to be educated. I don't know what to do anymore! I am completely lost. When will my life turn upward? I know I have a choice to respond in a positive way, and I do try. I try so hard. But I pray that I am able to get into remission. I am so good at what I do, and I have wanted to help kids and families, to feel productive, to continue on with my life journey. There has to be more than this. It's so hard to watch others live, do things on the weekend, have fun and exciting things to look forward to. My body and self-image has taken such a negative spin. When will I look in the mirror and recognize the face that is looking back? When will it be MY turn to find someone special who will be by my side-to marry me and start a family with? When? I fight this battle each and every day with the hope that I will move forward and live the life I have always wanted. I can deal with being sick, but I want to be able to rise above and function. I want to function like a normal adult. I worked so hard to obtain my doctorate. It was such a huge accomplishment-even though I had so many medical challenges that I kept to myself throughout the process. Now I just want to use my education. I want my body back. I want my friends and social life back. I am so afraid that this is going to be all I get. I feel so lucky to be alive and have my family and my dog and my cat as support. I am so inspired and motivated to do so many things, but the roadblock is so heavy. I need help moving this roadblock so that I can continue on the path I was meant to. I am proud of myself for fighting this battle. I will not give in.

MY Behcet's

MY Behcet's describes how I was diagnosed with Behcet's, how it manifests in terms of symptoms, and how it digs a hole into the very center of my being.

Back on the 'Roids

So I have not been feeling well for the past month....what else is new. It's not just that. It is also that I have been getting new pains and problems. I have previously been diagnosed with tendonitis in one achilles tendon as well as in my right knee, I now have it in the other achilles tendon, my right hand near the base of my thumb, and my right arm from my elbow to my wrist. It is extremely painful! I was also in the Emergency Room on Sunday, October 21, due to severe skin ulcerations. I often get these but they typically remain small. This is the second time that I have had more than 8 of them that are larger than a quarter. Gross, painful, and swollen. I took a round of antibiotics for them, in case they were infected. However, a visit to my Rheumatologist in Chicago prompted a visit to Edward Hospital in case they are causing sepsis, which is an infection in the blood. Thank goodness that didn't happen, but they did start me on IV steroids, and sent me home with oral steroids. I have been off steroids for a while now, approximately 7 months I think. I really hate being on "the 'roids," as I call them, because I tend to get awful side effects.

For instance, I get severe anxiety. Even typing this is difficult because I am so anxious inside. It feels like I am crawling out of my skin. Along with this comes heart palpitations, sweating, insomnia....like I need more insomnia. :) And the most beloved side effect of all....weight gain.

Some good news!!! I had written to Senator Dick Durbin a few months back regarding the status of my student loans. Since receiving my doctorate and being unable to pay my loans, which I already feel like a total loser for, I have been receiving steady harassment for my inability to pay. I have filled out what's called a total and permanent disability form, which my doctor had to fill out the majority of the form. I have completed a total of 4 of these forms, mailed them in....and then was greeted by a "Denial" due to the fact that there was an abbreviation in it, or a medical code, etc.... Even if the information written was all correct, and them my poor doctor had accidentally included a code, they sent it back. I seriously think that they are just doing this to deny me, thinking I willl surely give up. Sorry, I can't give up people. This is my life, and lucky for you, and unfortunately for me, I have nothing to do but make sure that form is completed perfectly so that you have no reason to deny it.

Like I really want to be that person who doesn't pay for what I accomplished. I would gladly pay back my student loans....That would mean I have to be healthy enough. And that has not happened in the past five years...YET. I sincerely hope that it is going to get better....ANYWAY, I digress.... I received a letter in the mail a few days ago from Senator Dick Durbin stating that he and his office will contact the federal government and the lenders in attempt to get these loans written off. Suffice it to say that I have written numerous people in my journey thus far. I wrote President Obama, and got a "general" response stating that they are sorry for my struggles, but that the administration is currently working on the healthcare system.

Given the lack of responding by people I have written to, I was so excited to receive the letter from Senator Durbin! He stated someone from his office will be contacting me shortly. This alleviates a lot of stress. Knowing I have simply been heard means a lot to me. But knowing someone has not only heard, but is taking that one step more and doing something to help means the world to me. Thank you, Senator Durbin, for your sympathetic and supportive letter! :)

If anyone is reading this, have a great day....