2010 went pretty smoothly as far as my health was concerned. I only had one time I was in the hospital and that was because I had a kidney stone that was stuck that I had to have broken up with lithotripsy.
I started a new job at an outpatient vascular ultrasound lab in 2011. I had more regular hours and didn't have to work nights and weekends anymore like I was doing at the hospital. I was very happy with this career move.
My health was fine until August when I hurt my right shoulder. I really don't know how it even happened. It either happened when I was walking Banjo one day, or it was just a result of repetitive motion from doing ultrasound.
I did months of physical therapy to try to strengthen the muscles in my shoulder in hopes that it would allow my shoulder to heal. Unfortunately, it got worse and my shoulder kept dislocating. I went to my physical therapy office every morning before work and had them use kinesiology tape to tape my shoulder into place so that it would not dislocate during the day. I was on pain medication and used lidocaine patches on it to help with the pain. Finally, I decided enough was enough and insisted that my Orthopedic doctor order a scan to check for a tear. Sure enough, there was a tear in the labrum of my shoulder that was very rare and that usually only happens to football players or someone who has experienced extreme trauma. Nope, not with me. It just randomly happened for no reason.
Why did all of these random rare injuries keep happening to me?
Do I just have the worst luck in the world?
I had surgery to repair the tear in December 2011. I couldn't use my right arm for 8 weeks while it was in a sling, and then had extensive physical therapy after that. Considering that my career involves using my right arm 90% of the time, it was a long recovery to build up strength and regain full function. It wasn't easy, but I did it and made it back to work.
Maybe next year I could make it without another surgery.
2012 was a very exciting year! After 8 years of dating, Steve finally proposed to me! He completely surprised me and spur of the moment proposed at a carnival while we were on a ferris wheel ride stopped at the very top while fireworks were going off. I couldn't have imagined a more special moment.
This meant it was time for some major wedding planning and getting into shape!
We decided on doing a destination wedding in Myrtle Beach in April 2013. Once that decision was made, the rest of the planning was smooth sailing.
It was all going to be OK.
I was going to get my dream wedding on the beach and marry best friend!
Nothing could stand in my way!
Until a few months later when I thought I was having more issues with kidney stones, so I decided to scan myself at work and investigate.
I didn't find a kidney stone.
I didn't know what I found.
No one knew what I found.
What the hell was growing inside f me?
Friday, March 4, 2016
Saturday, February 20, 2016
I Want You to Know
People with chronic illnesses are often misunderstood.
-I really hate complaining, but sometimes its so hard when you are alone all day and just need to vent.
-If you think I don't look sick, it's because I have invisible illnesses. I'm glad you think I look good, but how I look is not an indication to how I feel.
Don't say, "I hope you feel better soon", because I won't. I might feel better from day to day, but there these are chronic conditions with no cure. Instead, just ask how I'm feeling or if I'm OK. Or if you don't know what to say, then don't say anything.
-My body does not regulate temperature well due to dysautonomia. I have a hard time getting warm when I'm cold, and cooling down when I'm hot.
-I am on many medications for my conditions, so if I'm not dealing with pain, anxiety, depression, insomnia, migraines, fatigue, then I'm dealing with nausea, dizziness, and brain fog from medication side effects.
-Yes, I have modified my diet to help with my issues.
-Being chronically ill is very lonely.
- I know I'm not terminally ill, but just like terminal illnesses, my conditions have no cure. They won't go away. This is my life.
We can't expect normal people who have never been through the same things that we have, to understand our struggles, so we are usually pretty tolerant of the things that are said to us regarding our health conditions and how it affects our lives.
Here are some things that I personally wish that everyone knew about me, and most ring true for any person battling their own body with a chronic condition.
It just might make you understand me a little better ;)
-Yes, my condition is real and I have been diagnosed by a doctor.
-Yes, my condition is real and I have been diagnosed by a doctor.
-I really hate complaining, but sometimes its so hard when you are alone all day and just need to vent.
-If you think I don't look sick, it's because I have invisible illnesses. I'm glad you think I look good, but how I look is not an indication to how I feel.
Don't say, "I hope you feel better soon", because I won't. I might feel better from day to day, but there these are chronic conditions with no cure. Instead, just ask how I'm feeling or if I'm OK. Or if you don't know what to say, then don't say anything.
-My pain and fatigue changes day to day, hour to hour, and minute to minute.
-I'm not tired, I'm fatigued. Even if I sleep all night, I never wake up feeling rested. Sleeping long hours or taking naps do not cure fatigue- it never goes away. You when you have the flu and your entire body aches and you feel to tired and weak to move? That is how my body feels every day. Sometimes I can fight through it, but most days require a nap. I'm not lazy, my body just physically cannot function and I have to lay down.
-I know my body's limits and I know not to push myself past my threshold or I will pay for it for several days later. If I say I can't do something, I really can't do it. You don't have to understand, just believe me when I hit my limit.
-The cold temperatures make many of my conditions worse. The cold air makes my muscles contract and go into spasms which is very painful. If you have ever broken a bone or had a joint operated on, you know that it never feels the same after that, and that weather affects how it feels. My knee, shoulder, and back pain increase with cold or rainy weather.
-My body does not regulate temperature well due to dysautonomia. I have a hard time getting warm when I'm cold, and cooling down when I'm hot.
-I am on many medications for my conditions, so if I'm not dealing with pain, anxiety, depression, insomnia, migraines, fatigue, then I'm dealing with nausea, dizziness, and brain fog from medication side effects.
-I know you mean well, but I hate it when you say "Have you tried this or that for your conditions?" Trust me, I do countless hours of my own research on treatment options and have tried many. Chances are the thing you saw on TV or that Dr. Oz says or that your friend's sister tried is not actually effective- or I've tried and it didn't work for me.
-Don't give me medical advice if you aren't a doctor.
-Yes, I have modified my diet to help with my issues.
-Sometimes I just want you to listen to me. I don't need suggestions or advice, I just need to talk or vent judgement-free.
-Don't ever tell me that getting old is hell. I hear it from people constantly! You know what's worse than getting old? Being young and unable to enjoy your life.
- I am very matter- of- fact and realistic. about my health issues.
I'm not negative, I just know what up I'm up against and like to be honest and upfront about it.
I often downplay the degree of pain. I think I do it mostly so that other people don't feel bad for me or put extra burden on them.
I do it to make other people feel more comfortable. Because no one knows how to react when when you say "No, I'm not doing well today."
I do for myself to to try to convince myself it's not as bad I think it is.
I do it for myself to pretend to be normal.
-If you don't know what any of my conditions are or how they affect me, ask me or Google it. I don't mind if you ask me! I prefer you ask than to have no clue about any of it. These conditions are all a part of me, so to really know me, you need to know what they are.
I do it to make other people feel more comfortable. Because no one knows how to react when when you say "No, I'm not doing well today."
I do for myself to to try to convince myself it's not as bad I think it is.
I do it for myself to pretend to be normal.
-If you don't know what any of my conditions are or how they affect me, ask me or Google it. I don't mind if you ask me! I prefer you ask than to have no clue about any of it. These conditions are all a part of me, so to really know me, you need to know what they are.
-Being chronically ill is very lonely.
-It's hard for me to make plans when I literally don't know what I will feel like each day.
-When I'm having a flare, I can act very grumpy and on edge. It is nothing personal, it's just hard to have patience with myself and other people when I'm having a bad day.
-Even if I cancel or have to reschedule plans, please keep inviting me to things! I do my best to be social when I can and it helps to know that others are thinking of me!
-Sometimes I prefer to be alone. Its easier to be alone than to have to be around people who just don't understand you.
- I know I'm not terminally ill, but just like terminal illnesses, my conditions have no cure. They won't go away. This is my life.
-I still have hope that better treatments will be developed that will allow me to live the life I hope to.
Tuesday, February 2, 2016
2009
Remember when you thought you had life all figured out?
It wasn't going to be so bad, right?
Remember when life laughed at you and said, "nice try"?
I remember in 2009 when I graduated college, when I thought I had it all figured out. I would take my board exams and get a great paying job doing ultrasound, I would save up money for a wedding that I hoped would be coming soon, and I would be able to immediately start paying down my looming student loan debt. I would get married and have kids within 3 years, tops. We would live happily ever after....right???
Easy peasy....right?
Well as I'm sure you've figured out, none of that happened. At least not in the way I thought it would.
During my last year in college I had clinical rotations where I worked full time in the hospital as an intern learning Ultrasound, and still took classes and tests on the side. It was super busy, but it was also amazing. I loved learning about my field and it was one of the best years of my life. Except, remember my pesky left knee problems? Those got worse because I was constantly on my feet in the hospital. I was able to squeeze in some physical therapy appointments after work, but honestly I was so exhausted that it was hard to keep up with it and make progress because by the end of the day I was mentally and physically spent. It seemed like PT was actually making my knee worse, so I put it on hold. The pain got to the point where when I got home from the hospital each day I had to lay in bed with ice on it to get the pain and swelling to go down so I could actually walk again.
I saw 3 different knee specialists in my area to see what could be done to help my knee pain. The first two told me that they couldn't help me because the joint was too deteriorated and I kept getting referred to a different doctor that maybe could help me. I finally ended up with an amazing Orthopedic surgeon that was open, honest, and straight to the point with me, which is exactly what I needed after months of being shuffled around to different specialists. I could try to go through with an meniscus transplant to try to provide more padding inside my knee to cushion it and cut down on pain and discomfort, but since the arthritis is so severe, the chances were very slim that it would be successful.
My other option was a tibial osteotomy where he would cut a wedge in my tibia, fill the wedge with bone from my hip, and realign my leg to try to offset the weight bearing onto the "good" side of the knee. Or the last option was to do nothing and just wait until I was old enough to be a candidate for a replacement.
I decided to go with the osteotomy, for better or for worse. I couldn't keep being in so much pain and do nothing, and this sounded like the best bet. It couldn't be that bad, right???
I graduated at the end of May, had my first board exam the following week, and then had my osteotomy surgery on June 15, 2009. I was in surgery for some ridiculous amount of time like 8 hours, I woke up in horrendous pain and ended up staying in the hospital for 2 nights while they tried to control my pain. I went home with my parents during my recovery.
I truly don't remember a big chunk of this time because I was on massive pain meds. I remember it was not pleasant for anyone. I remember sleeping on a twin bed in the living room, having my leg in a continuous motion exercise machine, and having a commode in the living room so I didn't have to go far for the bathroom. I had to give myself blood thinner injections.
Steve and I bought our first house and closed on it in July 2009. I think I made it to the house at some point in July and moved in. I was unable to put any weight on my knee for 8-10 weeks so I had a wheelchair and crutches. It was not exactly how I imagined moving into my first home with Steve would be. Kinda like how I didn't imagine starting college on crutches either...
I had intense physical therapy where I basically had to learn to walk again. I was so blessed to have such kind, caring, patient physical therapists that worked with me, and one of them had even been through an osteotomy herself, so she was a huge help in getting me through it.
This surgery was a huge undertaking, and I will say that I had absolutely no idea what I was getting into, and that I was in over my head. All of my friends who I graduated with had found jobs right out of school, and I was at home sitting alone, recovering with no end in sight.
Read more about the osteotomy surgery
At the end of August 2009, my mom told me about a dog that was at the local shelter that was beautiful and needed a home. He was past his kill date at the shelter and no one had claimed him or showed any interest in him, except my mom on my behalf, unbeknownst to me. So we ended up going to visit the dog at the shelter, and of course we fell in love. I was still on crutches. I was broken physically and mentally, and this dog just needed someone to take a chance on him.
Begrudgingly, Steve agreed, as long as he could pick the name. So, we brought Banjo home with us that day. Little did I know how much this wild, insane, aggressive, dog would transform into my sweet, loving, loyal best friend.
We both desperately needed each other. I needed something else to focus on, other than myself and my pain. He needed me to show him patience, love, safety, discipline and to give him a home. I can't put into words how much I love Banjo and how much rescuing him has changed and shaped my heart and life.
I ended up being able to walk well enough on my own to be able to work in January 2010, and finally got my first job working part time at a local hospital.
Ok, I got this under control. All would be well now.
Then life said again, "nice try!"
It wasn't going to be so bad, right?
Remember when life laughed at you and said, "nice try"?
I remember in 2009 when I graduated college, when I thought I had it all figured out. I would take my board exams and get a great paying job doing ultrasound, I would save up money for a wedding that I hoped would be coming soon, and I would be able to immediately start paying down my looming student loan debt. I would get married and have kids within 3 years, tops. We would live happily ever after....right???
Easy peasy....right?
Well as I'm sure you've figured out, none of that happened. At least not in the way I thought it would.
During my last year in college I had clinical rotations where I worked full time in the hospital as an intern learning Ultrasound, and still took classes and tests on the side. It was super busy, but it was also amazing. I loved learning about my field and it was one of the best years of my life. Except, remember my pesky left knee problems? Those got worse because I was constantly on my feet in the hospital. I was able to squeeze in some physical therapy appointments after work, but honestly I was so exhausted that it was hard to keep up with it and make progress because by the end of the day I was mentally and physically spent. It seemed like PT was actually making my knee worse, so I put it on hold. The pain got to the point where when I got home from the hospital each day I had to lay in bed with ice on it to get the pain and swelling to go down so I could actually walk again.
I saw 3 different knee specialists in my area to see what could be done to help my knee pain. The first two told me that they couldn't help me because the joint was too deteriorated and I kept getting referred to a different doctor that maybe could help me. I finally ended up with an amazing Orthopedic surgeon that was open, honest, and straight to the point with me, which is exactly what I needed after months of being shuffled around to different specialists. I could try to go through with an meniscus transplant to try to provide more padding inside my knee to cushion it and cut down on pain and discomfort, but since the arthritis is so severe, the chances were very slim that it would be successful.
My other option was a tibial osteotomy where he would cut a wedge in my tibia, fill the wedge with bone from my hip, and realign my leg to try to offset the weight bearing onto the "good" side of the knee. Or the last option was to do nothing and just wait until I was old enough to be a candidate for a replacement.
I decided to go with the osteotomy, for better or for worse. I couldn't keep being in so much pain and do nothing, and this sounded like the best bet. It couldn't be that bad, right???
I graduated at the end of May, had my first board exam the following week, and then had my osteotomy surgery on June 15, 2009. I was in surgery for some ridiculous amount of time like 8 hours, I woke up in horrendous pain and ended up staying in the hospital for 2 nights while they tried to control my pain. I went home with my parents during my recovery.
I truly don't remember a big chunk of this time because I was on massive pain meds. I remember it was not pleasant for anyone. I remember sleeping on a twin bed in the living room, having my leg in a continuous motion exercise machine, and having a commode in the living room so I didn't have to go far for the bathroom. I had to give myself blood thinner injections.
Steve and I bought our first house and closed on it in July 2009. I think I made it to the house at some point in July and moved in. I was unable to put any weight on my knee for 8-10 weeks so I had a wheelchair and crutches. It was not exactly how I imagined moving into my first home with Steve would be. Kinda like how I didn't imagine starting college on crutches either...
I had intense physical therapy where I basically had to learn to walk again. I was so blessed to have such kind, caring, patient physical therapists that worked with me, and one of them had even been through an osteotomy herself, so she was a huge help in getting me through it.
This surgery was a huge undertaking, and I will say that I had absolutely no idea what I was getting into, and that I was in over my head. All of my friends who I graduated with had found jobs right out of school, and I was at home sitting alone, recovering with no end in sight.
Read more about the osteotomy surgery
At the end of August 2009, my mom told me about a dog that was at the local shelter that was beautiful and needed a home. He was past his kill date at the shelter and no one had claimed him or showed any interest in him, except my mom on my behalf, unbeknownst to me. So we ended up going to visit the dog at the shelter, and of course we fell in love. I was still on crutches. I was broken physically and mentally, and this dog just needed someone to take a chance on him.
Begrudgingly, Steve agreed, as long as he could pick the name. So, we brought Banjo home with us that day. Little did I know how much this wild, insane, aggressive, dog would transform into my sweet, loving, loyal best friend.
We both desperately needed each other. I needed something else to focus on, other than myself and my pain. He needed me to show him patience, love, safety, discipline and to give him a home. I can't put into words how much I love Banjo and how much rescuing him has changed and shaped my heart and life.
I ended up being able to walk well enough on my own to be able to work in January 2010, and finally got my first job working part time at a local hospital.
Ok, I got this under control. All would be well now.
Then life said again, "nice try!"
Wednesday, January 27, 2016
New Doctor, New Problems
Imagine that you have several chronic health conditions that have taken years to diagnose and find treatments for.
Imagine that you finally find some good doctors who actually believe you and who you trust.
Now imagine that you move to a new city and now have to start this search all over again.
I knew that it would not be easy and would most likely be stressful trying to find a new local primary care doctor, instead of mine that was now 2 hours away. From the beginning it was difficult just to find any physicians that were even accepting new patients. I got recommendations from family and friends and called all of those offices, and none of them were accepting new patients. I was finally able to get into a doctor in the same practice that my husband goes to because I went to an appointment with him and pretty much begged. So, after waiting for almost 4 months, today was the day I met my new doctor.
I had some anxiety about this appointment because for someone like me who has multiple complicated conditions that need to be handled simultaneously, it is hard to trust someone new. I didn't always have the best luck with new doctors because they see my medical history and think I am a hypochondriac or drug seeker, or they have never heard of my conditions so they offer no help to me. I had been seeing my old primary care doctor for 11 years and she had been through a lot with me. Starting over was going to be hard no matter what.
Someone like me, who is OCD and has had plenty of practice seeing new doctors, keeps an electronic copy of her medications and past surgical history so that all she has to do is print them and take them to appointments, instead of trying to remember each one and cram them into the 5 lines on the medical history form that the offices give you to fill out. So, at my appointment today when my new doctor asked me if I was taking any medications, I said yes and handed her my list. Her eyes got huge, but she stayed silent trying to hold her composure. While she was inputting them into her computer, I saw her roll her eyes a couple times and she kept audibly sighing. She finally said, "You are on an incredible amount of medication. This is way above the normal regimen of medication that I usually prescribe." I replied with, "Yes, I know. I have an incredible amount of chronic health issues I am dealing with and I would love to not have to take these medications." It was silent for a few more minutes while she finished inputting my meds.
Then she looked at the next list I gave her, which was my surgical history and her tone got a little more understanding. "You've had three back surgeries? Wow, you poor thing!" My reply, "Yes, 3 back surgeries in 2 years. It's been hell."
Her reply, "I bet!"
Then I was asked to explain what exactly happened with my back. Was I in an accident? Was I injured?
Nope, I just have a defective body.
I also gave her a quick health summary that my previous primary doctor printed for me which had a list of all of my immunizations and my "problem list."
She looked skeptical about a couple of them. I could tell that she didn't believe in, or want to discuss, fibromyalgia at all. She didn't want to hear about my anxiety or depression, which I've struggled with since a teenager but has gotten worse as my health has gotten worse, and she eluded to the fact that I would have to see a psychiatrist for that.
Oh goodie, another new doctor to meet. Another doctor to explain this all to. Another doctor to look at my lists in disbelief. Another doctor to judge me...
She asked how I knew I had Castlemans' Syndrome. Um, because I had a tumor removed from my abdomen in 2012 and pathology told them that is what it is.
Then I was asked why I thought I had Ehlers-Danlos Syndrome. "Did you self diagnose this?"
Really lady??? Do I look like I want to self diagnose myself with more problems???
I replied, "No, I was diagnosed by a Genetic Counselor over the summer. I will make sure you get a copy of those records."
Her reply, "But all of these things are just so rare."
My reply "Welcome to my world."
She then examined me and asked what I do for a living. She seemed to understand that I was physically unable to work right now and agreed with my choice to pursue disability.
We talked more about my history, and she once again said that she is not comfortable prescribing all of my medications that I'm currently on, but that she would request my old records and read through them, and then would decide how to proceed.
Hopefully in that time she will pull her head out of her ass, look at all I've been through and what I'm still up against, and come up with a plan of care.
All in all, I guess the appointment could have gone worse. I still left the office feeling frustrated, vulnerable, tiny, insignificant, upset, and just raw. it's like she gets to see all of the weakest parts of me on paper, then question me like its my fault and I did something wrong. It sucks, but its certainly not the first time, nor is it the last time, that a health care professional made me feel this way. It's not uncommon for people with chronic invisible conditions to have these experiences. It takes months, and sometimes even years, to find a doctor that will take us seriously and actually try to help.
As I was driving home, a few things occurred to me. The first one was that I control how I let other people make me feel. I was not going to let this woman make me feel like less of a person just because there were things about me that she just didn't understand yet. Then I tried to put myself in her shoes. Here she is seeing a new 29 year old patient first thing in the morning, and she probably thinks that it will be an easy initial appointment, and then she gets blindsided by me. Patients like me require a lot of extra time and resources, which is something that most primary care physicians just don't have much of. There is such a shortage of primary care doctors, so their patient load is usually very high and they don't have time to figure out and manage chronic conditions. They want you to come in with an earache or sinus infection, prescribe antibiotics, and be done. They want something tangible that they can fix. That is what they are taught to do, find a problem and fix it.
Except for chronic conditions and invisible illnesses, there is no "fixing it". There is only management of symptoms and continuous follow-up care, which is time consuming and requires research on their part. Doctors really aren't ever trained in managing chronic conditions. If they don't know how to fix something, then they refer to a specialist in that area, which in my case means that I have several specialists, all of whom have never heard of my other conditions and don't know how they connect and how the care of one condition could affect the other condition. This provides poor continuity of care for me, the patient, and there is a huge disconnect between all of the doctors, and the patient is never treated as a whole. I have read many articles about this, and I have experienced it firsthand.
I will give her another chance to show me if she is willing to take me on as a patient and treat me with the quality care that I not only deserve, but am adamant about getting.
Let the chronic illness saga continue.
Those of you who are unfamiliar with me and my health issues, please feel free to refer to the "About Me" section.
Imagine that you finally find some good doctors who actually believe you and who you trust.
Now imagine that you move to a new city and now have to start this search all over again.
I knew that it would not be easy and would most likely be stressful trying to find a new local primary care doctor, instead of mine that was now 2 hours away. From the beginning it was difficult just to find any physicians that were even accepting new patients. I got recommendations from family and friends and called all of those offices, and none of them were accepting new patients. I was finally able to get into a doctor in the same practice that my husband goes to because I went to an appointment with him and pretty much begged. So, after waiting for almost 4 months, today was the day I met my new doctor.
I had some anxiety about this appointment because for someone like me who has multiple complicated conditions that need to be handled simultaneously, it is hard to trust someone new. I didn't always have the best luck with new doctors because they see my medical history and think I am a hypochondriac or drug seeker, or they have never heard of my conditions so they offer no help to me. I had been seeing my old primary care doctor for 11 years and she had been through a lot with me. Starting over was going to be hard no matter what.
Someone like me, who is OCD and has had plenty of practice seeing new doctors, keeps an electronic copy of her medications and past surgical history so that all she has to do is print them and take them to appointments, instead of trying to remember each one and cram them into the 5 lines on the medical history form that the offices give you to fill out. So, at my appointment today when my new doctor asked me if I was taking any medications, I said yes and handed her my list. Her eyes got huge, but she stayed silent trying to hold her composure. While she was inputting them into her computer, I saw her roll her eyes a couple times and she kept audibly sighing. She finally said, "You are on an incredible amount of medication. This is way above the normal regimen of medication that I usually prescribe." I replied with, "Yes, I know. I have an incredible amount of chronic health issues I am dealing with and I would love to not have to take these medications." It was silent for a few more minutes while she finished inputting my meds.
Then she looked at the next list I gave her, which was my surgical history and her tone got a little more understanding. "You've had three back surgeries? Wow, you poor thing!" My reply, "Yes, 3 back surgeries in 2 years. It's been hell."
Her reply, "I bet!"
Then I was asked to explain what exactly happened with my back. Was I in an accident? Was I injured?
Nope, I just have a defective body.
I also gave her a quick health summary that my previous primary doctor printed for me which had a list of all of my immunizations and my "problem list."
She looked skeptical about a couple of them. I could tell that she didn't believe in, or want to discuss, fibromyalgia at all. She didn't want to hear about my anxiety or depression, which I've struggled with since a teenager but has gotten worse as my health has gotten worse, and she eluded to the fact that I would have to see a psychiatrist for that.
Oh goodie, another new doctor to meet. Another doctor to explain this all to. Another doctor to look at my lists in disbelief. Another doctor to judge me...
She asked how I knew I had Castlemans' Syndrome. Um, because I had a tumor removed from my abdomen in 2012 and pathology told them that is what it is.
Then I was asked why I thought I had Ehlers-Danlos Syndrome. "Did you self diagnose this?"
Really lady??? Do I look like I want to self diagnose myself with more problems???
I replied, "No, I was diagnosed by a Genetic Counselor over the summer. I will make sure you get a copy of those records."
Her reply, "But all of these things are just so rare."
My reply "Welcome to my world."
She then examined me and asked what I do for a living. She seemed to understand that I was physically unable to work right now and agreed with my choice to pursue disability.
We talked more about my history, and she once again said that she is not comfortable prescribing all of my medications that I'm currently on, but that she would request my old records and read through them, and then would decide how to proceed.
Hopefully in that time she will pull her head out of her ass, look at all I've been through and what I'm still up against, and come up with a plan of care.
All in all, I guess the appointment could have gone worse. I still left the office feeling frustrated, vulnerable, tiny, insignificant, upset, and just raw. it's like she gets to see all of the weakest parts of me on paper, then question me like its my fault and I did something wrong. It sucks, but its certainly not the first time, nor is it the last time, that a health care professional made me feel this way. It's not uncommon for people with chronic invisible conditions to have these experiences. It takes months, and sometimes even years, to find a doctor that will take us seriously and actually try to help.
As I was driving home, a few things occurred to me. The first one was that I control how I let other people make me feel. I was not going to let this woman make me feel like less of a person just because there were things about me that she just didn't understand yet. Then I tried to put myself in her shoes. Here she is seeing a new 29 year old patient first thing in the morning, and she probably thinks that it will be an easy initial appointment, and then she gets blindsided by me. Patients like me require a lot of extra time and resources, which is something that most primary care physicians just don't have much of. There is such a shortage of primary care doctors, so their patient load is usually very high and they don't have time to figure out and manage chronic conditions. They want you to come in with an earache or sinus infection, prescribe antibiotics, and be done. They want something tangible that they can fix. That is what they are taught to do, find a problem and fix it.
Except for chronic conditions and invisible illnesses, there is no "fixing it". There is only management of symptoms and continuous follow-up care, which is time consuming and requires research on their part. Doctors really aren't ever trained in managing chronic conditions. If they don't know how to fix something, then they refer to a specialist in that area, which in my case means that I have several specialists, all of whom have never heard of my other conditions and don't know how they connect and how the care of one condition could affect the other condition. This provides poor continuity of care for me, the patient, and there is a huge disconnect between all of the doctors, and the patient is never treated as a whole. I have read many articles about this, and I have experienced it firsthand.
I will give her another chance to show me if she is willing to take me on as a patient and treat me with the quality care that I not only deserve, but am adamant about getting.
Let the chronic illness saga continue.
Those of you who are unfamiliar with me and my health issues, please feel free to refer to the "About Me" section.
Sunday, January 24, 2016
Who's in Charge Here?
My health and body first began to dictate parts of my life in 2004. The summer before I began my freshman year in college, my left knee was becoming increasingly more painful. I tore my ACL playing soccer in 2001 and had surgery to repair it. It turns out that there was more damage done to the meniscus and knee joint itself from that injury than the doctors originally thought, and I had already developed progressive arthritis. My orthopedic doctor at the time thought I would benefit from a quick arthroscopic surgery to help "clean up" the joint. By the time the surgery was scheduled, it was a month before I was supposed to move into the dorms. It wasn't supposed to be an issue because I would be able to walk normally within a week after my surgery. Well, it turns out that the arthritis was so bad that almost all of my cartilage in my knee was gone, so the doctor did some drilling into my bone marrow to try to promote new cartilage growth. I could not put weight on it for 6-8 weeks while that healed, which meant that I got to start college on crutches.
You know what's not a fun time? Learning your way around campus while on crutches, and having to make your roommate help you carry your books to and from your classes, and have to carry your tray in the cafeteria because you can't use crutches and carry a tray of food. It was pretty miserable, but luckily my roommate was very sweet and never seemed to mind helping out.
My knee was never really the same after that. The surgery didn't help my pain much, and a year later I ended up getting a series of injections in the knee to build up the synovial fluid to create more padding in my knee in the hopes that it would reduce my pain. It helped for a little while, but I was told by the doctor that this was going to be an ongoing issue for the rest of my life, and it would be in my best interest to try to preserve my knee and to avoid a career where I would be on my feet a lot. Well the joke was on me, because I was going to college for nursing, which is very labor intensive and you are constantly on you feet. Ok... so now what?
I did a lot of soul searching and tried to find a balance between finding a career in the health care field, and finding something that I would realistically be able to do long term given my current circumstances. The daily knee pain was a constant reminder that it was not going away any time soon. I decided to transfer to a different school and major in Diagnostic Medical Sonography, also known as Ultrasound. I loved the program and loved that I could still be an active member in the health care community, just in a different way than I had originally planned.
My knee pain persisted, but it went on the back burner of my mind for a while because in 2006, the year I began the Ultrasound program, I began suffering from very severe pelvic pain. I have always had very painful periods, but birth control therapy had pretty much kept it in check. The pain I was experiencing in 2006 was a whole new beast. It was constant, searing, throbbing, burning, cramping and NOTHING helped it. I remember nights of just laying on the floor curled up in a ball crying because it hurt so bad and I didn't know what to do. I went to two different Ob/Gyn specialists who pretty much blew me off. One told me that I probably just pulled a muscle. I could have punched her! The only thing worse than being in excruciating pain and not knowing why, is having a doctor not believe you. My determination in finding an answer led me to a wonderful Gyn surgeon who not only believed me, but also promised to get to the bottom of it.
I had my first exploratory abdominal laparoscopy in 2007 and was diagnosed with endometriosis and interstitial cystitis. This surgeon did what she could to remove the endometriosis that was implanted throughout my pelvic cavity and on my bowels, but it was not her expertise, so I was referred to a doctor that specialized in treating endometriosis. My pelvic pain returned, and within 6 months I had my second laparoscopy to more effectively remove the endometriosis. My interstitial cystitis (also known as painful bladder disorder) was treated with weekly catheter instillation treatments which filled my bladder with lidocaine to help numb the pain, and then a daily oral medication, which I still have to take. My endometriosis specialist told me that if I ever wanted to have children that I should seriously consider doing it soon before scar tissue became a problem and caused infertility. Try swallowing that news at age 21 while you are still in college and all you ever wanted was to be a mom someday.
I though your 20's were supposed to be fun! I was not out to a good start!
Little did I know, this was peanuts compared to what laid ahead of me.
You know what's not a fun time? Learning your way around campus while on crutches, and having to make your roommate help you carry your books to and from your classes, and have to carry your tray in the cafeteria because you can't use crutches and carry a tray of food. It was pretty miserable, but luckily my roommate was very sweet and never seemed to mind helping out.
My knee was never really the same after that. The surgery didn't help my pain much, and a year later I ended up getting a series of injections in the knee to build up the synovial fluid to create more padding in my knee in the hopes that it would reduce my pain. It helped for a little while, but I was told by the doctor that this was going to be an ongoing issue for the rest of my life, and it would be in my best interest to try to preserve my knee and to avoid a career where I would be on my feet a lot. Well the joke was on me, because I was going to college for nursing, which is very labor intensive and you are constantly on you feet. Ok... so now what?
I did a lot of soul searching and tried to find a balance between finding a career in the health care field, and finding something that I would realistically be able to do long term given my current circumstances. The daily knee pain was a constant reminder that it was not going away any time soon. I decided to transfer to a different school and major in Diagnostic Medical Sonography, also known as Ultrasound. I loved the program and loved that I could still be an active member in the health care community, just in a different way than I had originally planned.
My knee pain persisted, but it went on the back burner of my mind for a while because in 2006, the year I began the Ultrasound program, I began suffering from very severe pelvic pain. I have always had very painful periods, but birth control therapy had pretty much kept it in check. The pain I was experiencing in 2006 was a whole new beast. It was constant, searing, throbbing, burning, cramping and NOTHING helped it. I remember nights of just laying on the floor curled up in a ball crying because it hurt so bad and I didn't know what to do. I went to two different Ob/Gyn specialists who pretty much blew me off. One told me that I probably just pulled a muscle. I could have punched her! The only thing worse than being in excruciating pain and not knowing why, is having a doctor not believe you. My determination in finding an answer led me to a wonderful Gyn surgeon who not only believed me, but also promised to get to the bottom of it.
I had my first exploratory abdominal laparoscopy in 2007 and was diagnosed with endometriosis and interstitial cystitis. This surgeon did what she could to remove the endometriosis that was implanted throughout my pelvic cavity and on my bowels, but it was not her expertise, so I was referred to a doctor that specialized in treating endometriosis. My pelvic pain returned, and within 6 months I had my second laparoscopy to more effectively remove the endometriosis. My interstitial cystitis (also known as painful bladder disorder) was treated with weekly catheter instillation treatments which filled my bladder with lidocaine to help numb the pain, and then a daily oral medication, which I still have to take. My endometriosis specialist told me that if I ever wanted to have children that I should seriously consider doing it soon before scar tissue became a problem and caused infertility. Try swallowing that news at age 21 while you are still in college and all you ever wanted was to be a mom someday.
I though your 20's were supposed to be fun! I was not out to a good start!
Little did I know, this was peanuts compared to what laid ahead of me.
Tuesday, January 19, 2016
Today I Woke Up
Today I woke up just like any other day. I usually have the same few thoughts every morning. The first is, “Why do I still feel exhausted??” Then I start to think about all of the things I would like to accomplish that day. So many things to organize, clean, and unpack and get settled. So many little things on my To-Do list that have just been lingering there. Maybe I will get laundry done, and go grocery shopping. Maybe I will vacuum the ridiculous amount of dog hair piling up. Maybe I will even work out and go to the gym today! I better get up and get moving!
Then I start to sit up in bed and stretch...and there is my constant companion- pain. That same sore, stiff, achey feeling in my low back and in my left knee, the throbbing pain in my right shoulder because I always end up laying on it when I sleep and it tries to dislocate on me. The same burning, sharp, searing nerve pain in my left foot and leg. And then there is the feeling that my entire body has been hit by a truck. I ache everywhere and the profound fatigue that my body feels is something you expect if you were sick with the flu- but I’m not. No miracle was performed in the night that left me full of energy and free of pain today. This just another “normal” day for me.
I have never been, and never will be, a morning person. Mornings just aren’t my thing. I love the night time and I love my sleep. As if getting up in the morning isn’t hard enough, then add all of those thoughts and feelings onto it within the first few minutes of waking up, and you can imagine that it is hard for me to get moving and motivated. I am on pain medication pretty much around the clock, so what I look forward to most in the morning is eating my breakfast so that I can take my pain meds. All bets are off for anything getting done until the meds kick in and make me forget about some of my pain for at least a little while. Coffee helps, too!
I did manage to get some things done that I wanted to today before my legs turned to lead and my eyes were so heavy that I had no choice but to surrender to my bed. I did laundry and changed the sheets on the bed. I cleaned up the kitchen and dusted the living room. I was smart enough to take a shower and do my hair last night so that I don’t have to add that to my list of things to do today. Showering and drying my hair brings on extreme fatigue for me, so I have been resorting to doing it at night so that I can go to bed after. This is somewhat new to me. This is also one of the many reasons why I am often late for things. It takes me so much longer to get ready and I just want to quit and take a nap when I’m done. No one has any clue how hard this is for me. Maybe it’s better that way...
I go to bed between 10-11pm and it usually takes me at least an hour to fall asleep, and then I toss and turn all night, and have to get up and pee at least once, then have to try to get comfortable all over again and fall asleep again. According to my FitBit, I am restless for an average of about an hour a night, and wake up between 4-10 times, even when I take my sleeping meds. Its easy to see that although I am physically and mentally exhausted, my body just can't get the rest it really it needs. This is why I HAVE to lay down at least once during the day. There is no fighting through it. I know my body and I know my limits and I know when I have to give it a break before it rebels and I get a migraine or my pain starts to flare even worse.
I go to bed between 10-11pm and it usually takes me at least an hour to fall asleep, and then I toss and turn all night, and have to get up and pee at least once, then have to try to get comfortable all over again and fall asleep again. According to my FitBit, I am restless for an average of about an hour a night, and wake up between 4-10 times, even when I take my sleeping meds. Its easy to see that although I am physically and mentally exhausted, my body just can't get the rest it really it needs. This is why I HAVE to lay down at least once during the day. There is no fighting through it. I know my body and I know my limits and I know when I have to give it a break before it rebels and I get a migraine or my pain starts to flare even worse.
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