My story starts back in 1999 when I went to the doctor for anxiety issues. My anxiety was situational – I had a very sick mother, had just started college and was in a not so great relationship. I guess since I was so young, short-term anti-anxiety medications were out of the question and I was given antidepressants. The problem with antidepressants is that if you are not clinically depressed (don’t have a chemical imbalance in your brain) then they can actually cause a chemical imbalance creating the very same issues they are meant to treat. I thought something was wrong, so I went to the person who was supposed to know- a psychiatrist. There, I was diagnosed with bipolar disorder. Let me reiterate here that I had no chemical imbalance to start with. So here begins my journey as a “crazy” person.
I was pumped so full of medicines that I didn’t need until basically I had become a zombie – barely able to function in daily life – and that just kept them filling me with more meds. I never questioned the doctors because I trusted them. Also, since the medication was causing the same symptoms that I was “supposed” to exhibit, I believed that they were correct. Maybe I was symptomatic, but through it all (hospital stays, the loss of my mother, a physically abusive husband) I was never suicidal. I just had “issues” and dealt with them accordingly by taking the medicine that I was prescribed – exactly as it was prescribed. However by 2005 I was separated from my husband, was halfway homeless, and still wasn’t over the death of my mother. A “perfect storm” was brewing. Add to that the addition of a new medication to my regimen that caused suicidal thoughts and BAM!
I purposely overdosed on said medication and spent the next 6 months of my life in the hospital. During that time I spent three an a half weeks in ICU. While in a medicated coma an NG tube was inserted for nutrition purposes and I was given a tracheotomy for life support. Apparently the NG tube was not inserted properly and my stomach was punctured, allowing the “liquid nutrition” to fill my abdomen for a week before it was discovered. I turned septic from infection, had double pneumonia, a lung collapsed, my kidneys and liver both failed and I developed MRSA. My family was advised to remove me from life support. However, since I was still legally married, the final decision rested with my ex and he refused to sign the papers to have me removed. I eventually began to get better. After the stomach perforation repair surgery, my abdomen was left wide open to allow the infection a way to get out. A wound vac was used. That is one feeling I will never forget and one that I pray I never have to experience again. I endured humiliating bed baths, respiratory therapists that would get angry with me when the tracheotomy tubes would loose suction and I felt as if I were suffocating, the inability to tell anyone anything because of the trach, and nurses who were so rude and disrespectful that my sister actually got one of them fired.
After the six months in the hospital, I spent another month in a rehabilitation hospital learning how to walk again. A 24 yr old amongst a sea of grey-haired people with broken hips. After that was a few months of home health nurses who came out every week to check on the open wound left where my belly button had been. It was about 3 inches in diameter. Eventually, skin grew back over it. Let me add in here that as soon as I was discharged from the hospital I quit taking all of the medications related to my “mental illness”. Funny thing that for a disease with no cure, I was perfectly fine. Turns out that it had been a misdiagnosis to start with. It wasn’t until recently that I started exhibiting anxiety issues again and started going to a great psychologist and psychiatrist. I now take medication for my anxiety, not for a problem that I don’t have.
My next surgery was in 2006 when a hernia developed where the open wound was. Since it was left completely open (the muscle wasn’t even closed back) the hernia was inevitable. That surgery was done by the same doctor who had done my gastric bypass in 2001 (I forgot to mention that, huh?). I think he was the only doctor I trusted at that point since I did extremely well with the bypass. After that, I continued to hurt in my stomach, but of course none of the doctors could find a reason for it. One doctor went as far as to say that there was absolutely no reason for my pain – it had to be in my head. He said that he could refer me to a psychiatrist or he could add me to the office’s list of drug-seekers. Needless to say I never went back there again.
In 2007 my ob/gyn found a cyst. I was told that it was an ovarian cyst. He tried to remove it using laparoscopy but said that he was unable to because of scar tissue. That was the first time I had heard any mention of scar tissue. He claimed to have removed what he could of it before closing me back up.
I had two other surgeries for “ovarian” cysts before finally being told that none of them had actually been attached to the ovary. They had all been free- floating cysts found amongst scar tissue. This was when it was explained to me that internal scar tissue is also known as adhesions – probably caused by the abdominal infection in 2005- and I apparently had a ton of them! During these last two surgeries, no adhesions were removed. I was told that it would have been too dangerous to even try.
At this point I finally had some information, but I wanted more. I started doing research and found out that I wasn’t alone. Adhesions affect many men and women around the world. It wasn’t just me and I wasn’t crazy! Now I just had to find a doctor who understood them well enough to know that they were the reason I was hurting…
I was finally told by my fertility specialist (the one who had done the past two surgeries in order to try to preserve fertility because other doctors would have rather just done a complete hysterectomy to save time) that he could no longer be in charge of my care because I was outside his realm of expertise. He suggested an oncologist because he believed them to be some of the best laparoscopic surgeons and best capable of removing the adhesions. I saw a great oncologist who listened to my story and who had actually been present at my last surgery. He said that as much as he would like to be able to help me, his specialty was cancer, not adhesions, and that there had to be someone better qualified to be in charge of my care. He was the first one to put me on narcotic pain medicine. I had been avoiding it at all costs because I was in college at the time and needed the mind clarity to do well. However, my blood pressure had begun to rise as a result of the pain and I gave in and accepted the medication. Of course, it did what I was afraid it would do and clouded my thinking.
After some research, I finally found my current doctor. He completely lived up to his online reviews. On the first visit, between the exam and time in his office, he spent anywhere from 45 minutes to an hour with me. He thoroughly went over all post operative records from the other doctors and quietly listened to my symptoms. I told him how I could no longer even sit through a two hour college class without having to stand up and walk around to relieve the pain and pressure and I also told him about the effect the pain relievers were having on me cognitively. He was the first doctor EVER to tell me “Of course you’re hurting! You have too much going on inside of you not to be. Your insides are completely stuck together with adhesions.” Do you have any idea how relieved I was to not hear once more that there was absolutely no reason for my pain or that I was some other doctor’s problem? I wasn’t crazy! I felt validated! He told me that he wanted to try to avoid another surgery, but that we would come up with a game plan to try to make life manageable. We did a pretty good job for about two years using medications, trigger point injections, and physical therapy. I did have to quit school, though, which broke my heart. Being very close to my last year, I was simply unable cognitively to handle the ever present research paper that seems to be a part of every upper level class. Having to leave school without finishing for the second time in my life almost broke my heart, but I just couldn’t do it anymore.
My life since then has been pretty bleak. I spent a couple of years in bed. Mainly because of pain, but partly because I was depressed having realized that I had finally become completely useless as a member in society. I couldn’t keep my own house clean. Only on rare occasions was I able to cook a decent meal for myself and for my partner. He had to work all day and then cook his own meals too while I wasted away in the bed.
I finally agreed to go to a pain clinic. Up until that point pain specialists scared me. I truly thought of them as legalized drug dealers and wanted no part of it (that’s what you get for watching too many documentaries on TV about the pain clinics in Florida). I finally agreed, however and was pleasantly surprised that his goal was also to get me off of the narcotic pain relievers by using different types of nerve blocks so that the affected sets of nerves were unable to transmit the pain signals to the brain. So far, we have been unable to find a set of nerves that work, and the insurance company as of late, has been denying requests to try more.
After that, I saw a rheumatologist who diagnosed me with Fibromyalgia. So on top of the adhesions, the fatigue and muscle aches were because of the Fibro. Recently I was given an inhaled steroid that has greatly improved my energy and mobility. It may be a sign of an immune system disorder, but I will have to see the rheumatologist again to make sure. All I know is that after almost three years inbed it feels good to be moving again.
Why is all of this in my “About Me” section? Because all of this has made me who I am today. I have been through a lot and I am strong. I am a good, loyal friend, and I have hope…hope that gets me through life, even if it is just a day at a time. This blog is my way of getting my thoughts out of my head, and my way of inspiring others. I want to teach people about adhesions so that they are no longer the medical profession’s tightly kept secret. I also write my blog here in order to meet people who are going through the same struggles I am, people who understand me. I persevere because of my online friends who support me when I need support. I fight…because I know no other way.