So I have been living back in Illinois for a little over four years, and I have looked for support groups the entire time. I have found a few through Meet-up online, and those did not meet my expectations. They are started by random people and I didn't have a good experience. I want to attend a formal support group led by a qualified professional..... Is that too much to ask?
Since receiving my diagnosis, I have found that there is a lack of cohesion between the medical field and psychology. In otherwords, although people place emphasis on the importance of the mind-body connection in theory, the practical applications of this have not yet impressed me. Having a doctorate in psychology and also being an individual suffering from a chronic illness provides me, I think, with a unique perspective. I know what patients need psychologically in coping with illnesses because I am living it every day. It leaves me in awe because I think that the field of psychology has so much to offer patients with medical problems. For example, when someone is diagnosed with any medical condition, I think there should be a mental health professional available to assist that person in processing the diagnosis. It can be very scary and unsettling to receive a diagnosis and then be sent out into the world to deal with it. Sometimes people have family members or friends with them, and that helps a ton. But when I was going through the long and trying process of receiving a diagnosis I was living in Arizona away from my family. I was trying to deal with the stressors of graduate school. I attended my doctors appointments alone. I left the appointments alone, my mind swirling with unanswered questions and fears and frustrations. I called my mom and sisters after each appointment, and it was so difficult to be away from them. I did have select friends that I chose to tell about my medical problems. But I didn't tell many people. I didn't want to be perceived as weak or get pity.
Edward Hospital, the hospital I frequently visit more than my local Starbucks, offers numerous support groups for cancer patients, but I haven't found many support groups for other medical issues. I am going to call one of the social workers associated with the hospital to determine whether or not I can attend any of the support groups. Edward Hospital has a very nice outpatient cancer center and I went there a couple of weeks ago to get an IV infusion of steroid medication. The center offers a variety of opportunities for patients to attend with the aim of reducing stress. For instance, there are yoga classes, healing sound meditation sessions, creative writing seminars, etc. These are all for cancer patients. What about the rest of us? The prevalence of autoimmune diseases is extremely high and there should be similar opportunities offered. There seems to be a gap in the services provided for individuals with medical problems unless it is cancer. I am not in any way or form stating that cancer patients should not receive these services. I am statint the opposite. They are wonderful experiences that I think should be expanded and provided for individuals with other chronic medical problems as well.
This leads me to wonder something.....I strongly believe that everything happens for a reason. I have this illness for a reason. Perhaps one of the reasons is that I am meant to work in the field of medical psychology. Although my past experiences have led me to believe my work should be strictly with children, the world may be telling me that I am meant to recognize the fact that increased psychological services could benefit individuals in a medical/hospital setting and to do something about it. I told my mom the other day that I wish I could work at a hospital and go around to visit patients and just talk with them. Just like I enjoy receiving visits from the therapy dogs, I would love to just have someone come and talk to me. The nurses and tech's do this when they can but they are often so busy with their work that they don't have much time for it. I think it would be so beneficial to offer patients a therapist who would come and check in with them daily while they are in the hospital. Especially for those who are hospitalized frequently, like me. It can be so lonely and stressful.
Another thing that bothers me is this....There are so many treatment centers (inpatient and outpatient) for individuals who need treatment for substance abuse problems. Why can't there be places similar to those for individuals who suffer from autoimmune diseases or other health conditions? Places where we can go and receive treatment for our medical problems that also incorporate other services like mental health treatment, yoga, exercising classes, etc. These centers are often located in California or other places near beaches, mountains, places that are beautiful and therapeutic in nature. I guess I wish I could go to a treatment center in California near the beach where I could enjoy the healing qualities of the ocean and the sun while receiving treatment for my disease. I could meet others who are going through what I am going through, and we can support one another. Those bonds can be so strong and can provide the foundation for lifelong friendships. I know that I have met two women in particular from writing this blog that have been so important to me. They have been there for me and it has been so wonderful to have two women who know exactly what I am going through. I have met many other wonderful people who have contacted me through the blog as well and I hope to get to know them more. I was hesitant about writing this blog in the beginning. I thought, "who will even read this?" I am pleasantly surprised at how many wonderful people I have met because of it. I never imagined that anyone would read it, or that anyone would be able to relate. I can honestly say that it has changed my life. Writing for me is incredibly cathartic and therapeutic. Writing about these experiences allows me to express what I am going through to the world. When other people write to me saying that what I said validated their experiences, well there is nothing better than that. I know I searched all over for people who were going through the same thing when I was first diagnosed. So I hope that individuals who are just diagnosed with Behcet's can find this helpful. I wish for it to be helpful for anyone, really, but especially those with Behcet's. Since the disease is so rare it can be that much more isolating and the need to seek others who can relate is huge.
If anyone knows of any support groups in Naperville or surrounding areas, please let me know! If anyone has attended any support groups (chronic pain or other groups) anywhere and is willing to share their experiences, please do so! I would love to hear if these groups helped and how they helped. I hope everyone is doing well. To those who may be struggling, hang in there and stay POSITIVE. I try every single day to combat those pesky negative thoughts with positive ones. It is a constant struggle. But keep with it, because the mind is a very powerful tool we can use to cope with the many obstacles we are faced with.
Thursday, April 25, 2013
Tuesday, April 16, 2013
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.
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.
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