Where have I been?

It's been a while since I have written, and that's because I have been very sick. I have been in the hospital so frequently that I now know all the nurses and tech's on the third floor of Edward Hospital. :) It literally has been one medical issue after another. Although I am used to not getting a break from pain and medical problems, this has been worse because the pain has been intolerable and the issues have resulted in multiple hospitalizations. I have had so many LARGE mouth ulcers it's rediculous. I was just in the hospital last Monday through Friday and received large doses of IV solu-medrol (steroids). I was discharged Friday afternoon and kept my IV in so that I could go to the outpatient cancer center Saturday morning and receive one additional steroid treatment. Typically one IV dose of solu-medrol is effective in treating my ulcers and then I go home and take 20mg for a week or two and taper right off. However the steroids do not appear to be working as effectively as they used to. After six days of IV steroid doses the sores are finally beginning to heal. The bad news is that I now have multiple sores that began on Friday and are already incredibly large. Normally it takes weeks to get this size, they are now getting larger quicker. I don't understand how ulcers can be healing yet simultaneously new ulcers are getting worse. It doesn't make any sense to me. Especially on the high doses of steroids that I received. It is so frustrating I can't even put it into words. Every medical professional that has observed my mouth ulcers has stated that they have never seen anything like this, even if they have seen Behcet's patients before. My case is so different and so resistant that I have now earned the diagnosis of "Refractory Behcet's." I may have already mentioned this in a previous post. This means that my case is extremely resistent to medications and I am constantly in a flare up.

After this recent hospital visit, I also learned that I now qualify for a diagnosis of Intractable Pain Disease. Pain can be qualified into three main categories: acute, chronic, and intractable. Chronic pain and intractable pain differs in the duration and the severity of the pain experienced by the individual. Intractable pain is experienced for longer than 3 months and there is no break from the pain. This type of severe pain causes measurable physiological changes in the individual, such as increased blood pressure and heart rate, increased hormone production, grinding of teeth, etc. I have experinced all of these. I never get a break from my pain. Furthermore, patients with intractable pain are typically taking high doses of narcotic pain medication and at times this medication may not be effective. Of course the ideal solution to my pain relief would be to find a medication regimine that would put my Behcet's Disease into remission. Treatment of my pain with narcotic pain medications is simply treating the symptoms or putting a metaphorical band aid on the pain. It is not treating the underlying cause of the symptoms. I have tried approximately 20 different medications in attempt to put my Behcet's Disease into remission, none of which have been effective. It is important to note that many of these medications have been effective in treating other patients with Behcet's. That is why each case is so different.

Research has stated that there is no suffering worse than intractable pain. Less than 2% of the population suffers from this type of pain. I find this interesting because less than 2% of the popultion obtains a doctorate degree, so I fall into two separate categories of small percentiles! Intractable pain can be debilitating, which is very apparent in my case. It prevents me from working, from leading a normal social life, from exercising like I used to, etc.

Although receiving this diagnosis officially has put me at ease because I now know that there is something that can explain the pain I experience every day, it is also frustrating knowing that it is extremely difficult to control or treat. I try so hard to remain positive while facing seemingly insurmountable challenges. Unless you have experienced chronic pain it is difficult for you to truly understand what it is like to live this way. I am literally in pain every hour of every day, and it has been this way for the past 5 years. I know some of you may not believe this, but talk to my doctors or my family members and they can absolutely confirm the truth of this statement. I am starting to get worn down from this pain. I think I have dealt with it pretty well up until this point, but I am not sure how much longer my body or mind can take it. I will always continue to fight this disease. To those of you who cannot comprehend what it is like to live with chronic pain, imagine this. If you have ever had strep throat or canker sores, imagine you have strep throat every day in addition to multiple canker sores all over your mouth. Add migraines, joint pain, tendonitis pain, arthritis in neck, extreme fatigue, body aches, etc. And then you have the side effects from medications, so add heart palpitations, anxiety/panic attacks, pancreatitis, weight gain and severe bloating so bad that you have difficulty breathing, insomnia, and nausea/diarrhea. At times all of this happens simultaneously. I am not over exaggerating. Sometimes you wake up and there is a different medical issue you have to deal with, such as different types of infection, the pancreatitis that I mentioned that occurred as a result of taking a medication called Imuran, and various other medical issues. Since my disease causes inflammation all over my body, this leads to a variety of medical issues. Inflammation can be blamed for pretty much all of my symtpoms. This is what I go through every day. Forget working, going to happy hour, going to the movies, hanging out at the beach, having a family of my own, dating normally, etc. Forget going shopping for cute clothes, sitting outside and enjoying the sun, spending time with friends, going to restaurants. Should I be able to do any of these things, and it doesn't occur often, I am in pain the entire time. How many of you would feel like going to work or happy hour or hanging out with friends while having strep throat, being exhausted, and having multiple other pains? I am guessing not many. I am pretty much in bed every day all day. I have to get up and walk around so that I don't get blood clots. But I don't function normally. The disease has drastically interfered with my ability to function as a normal adult. I kind of feel like a child. I don't have my own house, husband, kids, job, any of those things that adults my age either already have or may be working towards.

I know this may be hard to read and you may be thinking to yourself STOP COMPLAINING. I don't feel this is complaining, I feel that I am educating others on what it is like to live with a chronic illness. Often times we sweep this information under the rug because others don't like hearing stuff that isn't all rainbows and unicorns. This is real. And there are so many people who are suffering in this world with different illnesses. You are not immune. It can happen to anyone at anytime. So don't take your life for granted. Live in the moment and experience everything to the fullest. Appreciate your friends and family members. Enjoy the little things in life. Don't worry about the little things. Please don't take your health for granted. Without your health, you really don't have anything. Thank you for reading. I hope that you can take something positive from this. Always have perspective....when you are stressed about something think that there is always someone out there who has it worse than you do. Please stay inspired, and inspire others to be the best person you can possibly be. Tell your story, your voice is important. Each one of us has a unique and important story to tell, so share it. You never know who you may help out in the process.