Upcoming Surgery

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Image from:http://clearpassage.com/

Hopefully everyone read the post “About Adhesions” because it will help you to better understand what I am writing today. A few things have happened that I wanted to update everyone on.

My pelvic pain doctor had told me when I first started seeing him about three years ago that as good of a surgeon as he was, he didn’t believe that he was good enough to operate on me. My case was just too complicated. But he also spent 45 minutes with me that first visit talking with me, listening to me, and going over my surgical records. He was the first doctor to ever tell me that He knew exactly why I was hurting. Even after telling me that he would rather not operate he still let me know that we would try as many other things as he could to control the pain without surgery. I still thank God every day for my doctor. He is the only person (not online) that completely understands what I’m going through. After years of trying to “manage the pain” with medication, procedures, and physical therapy, I decided that it was high time for someone to go in and do something about it. I tried about a year and a half ago to send my medical records to a group of surgeons in Atlanta who are supposed to be the best at laparoscopic surgery but – their specialty is endometriosis. For this reason ( I don’t have endometriosis) and because there is apparently too much bowel involvement (too many adhesions on my bowels) I was turned down as a patient. They weren’t the first. I also went to an oncologist because they are also supposed to be good at detail oriented surgery (which is what I need) and was told that he worked with cancer, not adhesions (insert big DUH! here). So recently I found another doctor in my area claiming on his website to be the end all know all in gynecological surgery. Let me add here that he is French. Not that it matters, but later it will be easier on me to refer to him as the french doctor and for you guys to know who I’m talking about. He saw me and let me know in no uncertain terms (after not looking at the medical records I brought) that my problem must be gastrointestinal and that I was not his problem. I asked him how he would know who’s problem I was if he hadn’t looked at the records and didn’t know me other than a (very short and not very thorough) exam. I was so mad when I left there and so offended. I couldn’t believe how rude the guy was. So at this point I made an appointment with my doctor, the one I told you about at the beginning. I was angry. Angry that he could do the surgery and wouldn’t. Angry that I had had to be humiliated like I had been by the french doctor and angry that if he couldn’t do the surgery then why wasn’t he finding me someone who could. Did I mention that I was angry? Well of course after seeing me every couple of months for three years I didn’t have to tell my doctor that I was angry. I told him everything I had gone through with the medicine mistakes at my pain clinic, the rudeness of the french doctor I went to for a second opinion who told me I wasn’t his problem and then I asked him to please just try to get some of the adhesions out. I told him that I thought three years of being patient and trying other options was long enough. He kind of laughed as he said that he was going to quit saying “never”. He had several other patients that had been given the “you’re someone else’s problem” line one too many times and he agreed to try. He told me that I was well aware of the risks of another surgery and that all he was promising to do is to go in and look around. If he can cut 100% of the adhesions he would, but if it was too “messy” in there and all he could get is 1% safely then that would be all he would do. But at least he agreed to try! Then he did a pelvic exam (same one the idiot french doctor did) and found a polyp on my cervix. Did the other doctor really not know it was there or was it just one more reason that I was a complicated patient that he didn’t want to waste his time with? My doctor said that he would biopsy it during my surgery.

Turns out that the same day as my appointment with my gyno ( the good doctor) I had a CAT scan done by the gastroenterologist to find out why my stomach is swollen 3 times its normal size. Seriously, I look like I’m pregnant and I’m not. At first I thought that the adhesions were pulling on the intestines and trying to cause a blockage. So a week later we get the results back and it turns out I have a hernia. I know that it sounds completely insane to say that I was glad that that’s what it was, but It is a lot easier to fix than if it were the adhesions. So, now that needs surgical intervention too. The good thing is that the surgeries can be done at the same time an maybe since the other surgeon will be there, between the two of them they can clean up some of the mess I have inside. Part of me is not worried about the upcoming surgery- I mean I’ve had enough that it’s nothing new to me. The other part of me is scared to death because I know that the hernia changes things. The risk of complications has literally doubled and I’m worried that one day my luck will run out and I won’t wake up from surgery feeling better than I did going in. Only time will tell. Surgery is tentatively scheduled for August 28 depending on the availability of the general surgeon. Wish me luck everyone!

Count Your Blessings

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Image by: http://missioncambodia.wordpress.com/

When I was a little girl, my momma used to sit outside on the front porch swing every morning while I was getting ready for school. I asked her a few times (during my “why” phase) what she was doing out there. She would always say “I’m counting my blessings, baby”. She would say that she was grateful for a wonderful daughter who made a hundred on her last test. For a house that sat behind a beautiful church and for silly squirrels that would run around the yard. She was grateful for a job that allowed her to take care of us and for a family who loved us. She told me to never forget to take a few minutes each day to count my blessings.

I woke up sick a couple of nights ago around 4 in the morning. I had to take a shower, but unfortunately the shower woke me up. So there I was at 4:45 in the morning wide awake. I went ahead and made a cup of coffee, grabbed a cigarette (I know it’s a bad habit, but I have it under good authority that I will be quitting soon) and headed outside. While sitting on my back porch steps, I saw a couple of squirrels running around the yard and remembered my mother counting her blessings…so I started to count.

I am blessed to have a house. It may need some work, but it’s mine. I am grateful that it has a fenced in back yard which allows my dogs to run around freely and saves me from having to walk them on bad days. I am grateful for M- (when we spoke about the possibility of a blog I had to promise not to use his name, but I will often refer to him as M-, my other half, or my boyfriend). He has been there for me and supported me much longer than anyone else would have. When we met I was relatively healthy, but now he has been with me through two surgeries (and one coming up) and all of my emotional baggage that comes from the chronic pain. He can make me laugh when no one else can and for that I have a pretty good sense of humor about all the craziness of my illness. I am blessed to have 3 dogs that fill my days with joy. I it weren’t for them, I probably would have gone crazy a long time ago having to be at home. They are like kids and have to be cared for. They give me the strength to get out of bed when I would much rather stay there and they always make me laugh. I am lucky to have doctors that care about me and what I am dealing with. Don’t get me wrong, I have had some issues with a couple of doctors, but they are much better than the incompetent idiots that I have dealt with in the past.

I deal with my chronic pain every day, but in a strange way, I am grateful for it-it means that I am still alive. And THAT is a blessing!

20130901-230818.jpgImage by: http://indulgy.com/

Good day

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Image from: http://flicker.com

I had a good day today. Before I get into details, you have to understand that many days I spend in bed because the only way to get some relief from my pain is to lie in a fetal-like position. I know that doing that does nothing to help my muscles (my physical therapist has told me a thousand times) but some days that is really all I can do. Today I woke up, got dressed, and went to run a couple of errands. I came back home and resumed my fetal position for about an hour or so, but then got up and washed two loads of clothes. That in itself would be good, but it gets better! Later on this afternoon I got back up and dressed, put on my “happy face” (my “everything’s ok” face) and went to the store. No, I didn’t want to go, but I told myself a couple of things to get me going: 1) I need to eat and there is no food; 2) if I don’t go, I won’t have coffee in the morning (that could almost be considered a sin πŸ˜‰); and 3) it may hurt, but it does my body good to get out and about for a while. So, I go to the store for a week’s worth of groceries, come back home and……..wait for it………COOK SUPPER! It was only spaghetti, which is pretty quick to fix (I cheated and bought spaghetti sauce because my garden tomatoes aren’t ready yet), but the point is that I only rested for about 5 minutes from the time I finished putting everything away until I started cooking. By the time I was finished however, I was hurting too bad to eat. I took one of my pain pills ( the ones that I hate by the way, have I mentioned that?) and fell asleep (that would be one of the reasons I don’t like them). I finally ate supper around 10:30.

The point is, though, that I did it. And I’m proud of myself and I hope this means that the RF (radio frequency) treatment is going to work. (I also did something ELSE 😍 last night…it’s been a WHILE! Usually the pain comes the next day (at least I can enjoy it while it’s happening) but I’ll just have to wait and see how it goes. I have a “everything’s ok” face for that too. If my face is all twisted up in pain the next day he sees it as being his fault and the brakes are slammed on for an indeterminate amount of time – probably long enough for him to forget the look of pain from “‘the day after”. He is a good man and doesn’t like the thought of hurting me.

So, that was my day. Maybe tomorrow will be a good one too πŸ™‚

My pain

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Image from: http://painmanagementlosangeles.com/

After my last cyst (which was able to be drained instead of operated on) the pain just refused to go away. The pressure in my pelvis when I sat down or stood up that had been my warning that the cysts were back just never got better. I have a really hard time trying to describe my pain. Sometimes it depends on who I’m speaking with, but generally I feel as if it’s impossible to put the type and intensity of my pain into words. I will try here, but if any of my new “friends in pain” have a better way to describe this, please let me know.

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Image from: http://health.com

First of all, there are many pains at once, so even to understand one, you don’t have the whole picture. There is an uncomfortable pressure deep inside my pelvis whenever I sit down. The longer I sit, the worse the pressure builds up. I usually move around in my seat a lot shifting my weight to try to help, but eventually I just have to stand up. However, as I stand up the pressure is released, but not necessarily in a good way. It is fast and strong, but once the pressure evens back out I feel I can breathe again. The only way I have found to actually relieve this pressure is by laying in modified fetal potion. I hurt whenever I stretch (like to reach something in the cabinet or to pick something up off the floor). I have compared this pain to having my insides slowly turn to stone. Obviously, if everything is stuck together and hard as a rock, any type of stretch will be painful. My boyfriend says he doesn’t get that one because who has ever been turned to stone? Of course it’s not very relatable, but it’s the best I’ve come up with so far. Then there are the constant twinges as my body tries to digest food and move it along my intestines. My intestines are all practically glued together with adhesions, so they can’t move freely as they are supposed to. Next are the cramps. I have two types of cramps. The first one is best compared to the cramps you have when you have a bad case of diarrhea. They usually happen any time I am about to have a bowel movement. The second type of cramps are more like really sharp “stitches” that I feel deep inside either my right or left lower pelvis. It is rare to have them on both sides at one time, but I’m not going to say it’s never happened. They’re just usually on one side or the other. The one comparison most people understand for the general lower pelvis and lower back discomfort that I feel all day long every day is like menstrual discomfort- how you feel when you’re on your period. But it is the average person’s menstrual discomfort times 20. The last comparison I’ve used when my lower back hurts (the scar tissue has grown through the muscle) is that it feels kinda like working out to the extreme one day and feeling sore the next day. Let me just say here how I don’t agree with the doctor’s 1-10 pain scale because I can guarantee you that my 1-10 (really anyone who deals with chronic pain) is different from the normal person’s 1-10. I know this because a 10 is shown with a sad, crying face. When I hurt to the point of tears, the pain doesn’t necessarily go away. I have to deal with it and adapt until it no longer makes me cry. Eventually a stronger pain will come along which I have to adapt to also. I find myself laughing at the doctor’s office when someone tells the doctor their pain level is a 13 because they twisted their ankle (which by the way is not even swollen). They just have no idea!

Since I had my last procedure my back has been a little bit more sore than usual, but they said that could happen. I am SOOOOO ready for the pain to ease off like they said it would. Either way, I am going to have surgery again, so maybe the adhesiolysis (if the doctor decides it’s not too much of a risk to do) will give me some time pain free. It’s really only being done because They found an abdominal hernia that needs to be repaired. Luckily they will be able to do both at the same time. I just want some relief from this daily hell I live in. I would like for the surgery to buy me enough time to finish school. If nothing else, to graduate and have the degree whether I’m able to use it or not.

History contd…up to present

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Photo from http://tbedu.blogspot.com/2012/12/history-of-ubuntu-releases-part-3.html?m=1

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. Β 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 pressure and also 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! 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 good year in bed. Mainly because of pain, but partly because I was depressed having realized that I had finally became 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. It took a while for them to find the correct set of nerves, but when they did I actually had a whole good month. For once in a very long time I was able to do basic housework and even spent some time planting a garden in my back yard. The problem was that I only got a months worth of relief. I recently had another procedure done that is supposed to give about 6 months of relief, but it can take up to six weeks to work. It has been two and a half weeks and I am still waiting. Hopefully it will work soon.

History

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Picture from: ttp://thisismechallenge.blogspot.com/2012_02_01_archive.html?m=1

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 starts 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, 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. All these years later I still do not take any kind of antidepressant. Turns out that it had been a misdiagnosis to start with.

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 it! 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 had more information, but I wanted more. I started doing research and found out that I wasn’t alone. Adhesions affect many 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..

Day 1

I have to admit that the thought of writing a blog is very scary to me. You know, 1,001 thoughts about how no one will read it, or how will mine be different, ect. are running through my mind right now. However, I asked myself one day “if God wants me here in this crazy life I find myself in, it must be to help someone.” So, here goes – my attempt to help others by sharing my story.

I am currently 31 years old and have been diagnosed with adhesion disorder. I live life around doctors visits and tests and when I can or cannot get out of bed. Many things that people take for granted like cleaning their house and doing the dishes and laundry I am a lot of times unable to do. I WISH I could do those things. I will try to write more as I build up some confidence (I don’t have a lot of that right now either) and as I try to figure out how to tell a story as long and complicated as mine.