The last few weeks has been very stressful with school, work, doctor's appointments, diagnostic testing, etc. Fortunately, school will be wrapping up in the next few weeks and I will get a semester off before hopefully attending law school next fall. It is my first semester off in about 6 years! I will definitely enjoy not having classes or doing homework, for a little at least.
Tomorrow, I am having an MRI on my head and neck because of increasing symptoms and pain that I have been experiencing. I have posted about the visual disturbances which would be like seeing through a frosted mirror. At times, I have not been able to focus during these periods in time. First, I went to the ophthmalogist when it originally happened, but structurally everything looked okay. It seemed to ease my mind for awhile, but now it is occurring at a higher frequency which is concerning. After my surgery I started to develop even more unusual symptoms that were not explained as post-op complications. I developed nocturnal enuresis or incontinence which is definitely not typical of a 24 year old. I have been getting increasingly more frequent and severe headaches including light and noise sensitivity. Nausea has returned with a vengeance. My nerves have gone into overdrive as well. I have been also experiencing frequent nose bleeds, but only on my right side. Like most people I tend to hold my stress in my neck and shoulders, but lately it has been severe despite different release and relaxation techniques. Needless to say that an MRI will be helpful in determining if there are any issues with my head, neck, etc.
I saw my PCP yesterday to discuss some of these symptoms and the EDS and she agreed that an MRI was necessary. Typically, a CT w/ and w/out contrast are used, but with my history an MRI was decided would be the best. They also decided that it is time to see a neurologist as well. Chiari Malformation was discussed as a probable cause for my symptoms especially because it occurs at a higher rate in EDSers due to the collagen deficiency. If it is not Chiari, it may be a new onset of migraines which will also need the help of a neurologist. An appointment with a neurologist is long overdue because of all my nerve issues. My PCP also wanted a new blood panel done because it has been close to a year and it will help determine if any of my meds have affected blood counts, thyroid function, etc., and may account for the increased fatigue. I should know my results soon and I hope that these tests will help move us in the right direction.
Other Updates:
*Hips: I still have not heard back from Millis about my 4 month status, but will see my local OS for my 5 1/2 month post-op appointment a week from Friday. The pain in my right hip has still been very intense. I had x-rays done about a week ago and the bone has not completely healed and we may even be dealing with non-union, which would require further treatment to get the bones to fuse. One of the screws in the x-ray seems to even be bowing, which could either be because of the weight allowed on my leg or the non-union or both! I also say a THR doc as an option for the joint pain, but found out because of my FO I would need a custom implant which is $$$$$$ or the femur would need to be re-broke. Neither seems like a legitimate answer. The left hip has been a pain. I am still dealing with the chronic bursitis and it seems to be catching/locking more. It has been compensating for a very long period of time, but we can not address it further until my right hip is stable.
*Left Shoulder/Wrist: My left shoulder has been throbbing lately. It is the arm that is predominantly used with my crutch so that I am properly using my crutches and rehabbing my gait. However, it is a lot of stress on my shoulder. It has been subluxing more and more recently I hyperextended my wrist just doing basic daily tasks. I have been sleeping with my Flector patches on my shoulder which helps with the inflammation, but I will need to make a visit to Methodist Sports Medicine to see an Ortho for my shoulder soon if there aren't any improvements. I have continued to do strengthening exercises, but am getting to the point where I have hit a wall.
*Nerves/CRPS-2: I have had a history with nerve issues that started with nerve entrapments in my legs when I was running prior to my EDS diagnosis. I have had nerve entrapments in my hip, meralgia paresthetica, femoral nerve branch impingement, as well as nerve hypersensitivity and dysfunction classified as CRPS-2/autonomic dysfunction. I had taken Neurontin for an extended period of time and was at a dose of 2800-3200mg a day which at that point becomes ineffective. I then was placed on Lyrica and am at 400mg as well as Cymbalta. I am on numerous pain medications and have had numerous sympathetic blocks and nerve blocks, but we have come to a road block. My pain doc is having a mini team "conference" about a pain plan for me which may include ketamine or lidocaine infusions, medication adjustments, OT, acupuncture, pain counseling, etc. My pain doc right now is leaning towards the ketamine infusion, med adjustment, OT and counseling, but I will know more at my next appointment with him. I have set up a session with OT and a pain psychologist. I have definitely felt defeated over the last couple years, so I am willing to do what is needed to get some relief and some peace.
I have also set a goal for myself to lose 20lbs. I have gained weight since being in Army/ROTC and having numerous surgeries. The surgery/recovery process has token a toll and I am definitely not as "fit" or healthy as I would like to be or need to be. I need to be stronger and get in shape as much as I can with recovering. I have been doing pilates, but need to do more than I have been as well as adding additional low-impact cardio. It will be imperative for future surgeries and recoveries to have more strength otherwise results will not be as good as they can be. I would also like more energy and self-confidence. I have been down about myself and would like to feel better.
I have been looking into more inspirational and spiritual readings, quotes, music to help with my healing process and to help answer some of the questions and struggles I have had for years. I looked up my favorite biblical scripture:
"My peace I leave with you, my peace I give to you. Not as the world gives to you as I give to you. Let not your hearts be troubled, nor let them be afraid." John 14:27
I found this on an EDS support page and found this very inspiring:
To get up in the morning only to know that you have to face another obstacle takes strength. To smile when the only thing you can do is cry takes bravery. To act happy and laugh when you know that times are at their worst takes courage. To be joyous when the only good news is the best of the bad news takes support.
******
I want to wish everyone a Happy Thanksgiving and hope that everyone has a great holiday with the ones they love! I am very grateful and thankful for my family, friends and my aussie pup, Chloe. I am truly blessed!
Tuesday, November 22, 2011
Tuesday, November 15, 2011
The Thoughts of Others
The other night I was very upset by the words of someone I considered a friend. It was about me and posting my thoughts and feeling on my blog and on Facebook. It was about not being positive or believing that my surgery would work. It was about me not being grateful that I was not in a life-or-death position or grateful that others were worse off then me; therefore, I should be happy. I was hurt by the fact she was telling me this because I believe those things are not true, not to mention that it was all about my "wrongs."
I tried explaining to her that my blog and Facebook page were my outlets to express how I feel. I also tried explaining that it is not someone else's place to tell me how I felt, what I thought or believed. Yes, prior to my FO I was nervous, scared, doubting if it would work. All of which are normal. I was even more anxious by the fact this was a surgery to fix a previous "over-correction." It had been a long two years and I was nervous about the results, etc. I wanted and pushed for the surgery because all other options had failed. My parents helped pay for large portions, even used a bonus my dad received from work. This was the last real hope we had to make my right hip function better and decrease pain. So, I found it hard to listen to someone that was trying to tell me what I was thinking, when I was doing anything I could to get better. We are also in two very different places in our lives and have different experiences. Those experiences shape how you handle certain situations.
I have tried to be honest with how I have felt and express those feelings. I try not to put a facade on just to seem happy for the sake of others. It does more harm than good. Recently, my dad found this article in American Family Association Journal. It was about pain, healing and joy. I know I have been struggling with faith recently, but this definitely hit home and related perfectly to the situation I was going through with my friend. Excerpts I found especially helpful were "...Pain is natural and we are designed to feel it. That is where our sense of compassion comes from. We have to trust that God will bring us from a place of current pain to a place of healing and from there to a place of joy." "...We all know happiness, sadness, anger, joy and contentment. We run into more trouble we we try to act as though we do not have the negative feelings than when we intentionally own them. While "owning our feelings" may sound like New Age mumbo jumbo, there is scriptural support for the concept. It's called honesty. We are called to be honest with ourselves, with God and with others, even when it comes to how we feel. David, Job and Jeremiah all got angry with God, asking whether He could see their infirmities or if He was even paying attention at all. God did not strike them dead for being honest with how they felt. In fact, more times than not, He patiently listened and then helped them see things through his perspective. He would let them know that He was still in control and, while they were not aware of it, their suffering was but one step toward finding eternal joy."
I tried explaining to her that not only was I trying to express myself as a way of stress relief, but I was also healing. The last few years have been an intense journey and their were numerous things that I was healing from physically, mentally, emotionally and even, spiritually. It was also a shock to me because I was not trying to contact her with questions or trying to dump my problems onto her, but only expressing myself through my own outlets. It felt more like an unnecessary attack. After the Facebook responses to a posting, she texted me which is where I tried explaining these things. It was not successful, so I emailed her a letter of why I believed what I did and what I had gone through in hopes she would be able to understand more of where I was coming from, but it didn't work. I casually asked her the following day if she got my letter and it went south from there. I was told that all I talk about is myself and how I have had a lot to deal with everyday, everywhere. That I was not a positive person and that it wore on her. I was very upset at this point. I poured my heart out to her in a letter and again was attacked. Others tried telling me that when people lash out like that it is because of insecurities they have with themselves. That may be true. She may be lonely or scared, but that is why I tried telling her that is was okay to express yourself.
It is not someone else's place to tell you how to express yourself, to tell you how you have felt, believed or what to believe. I had not sought her ought, but instead she commented to me. If you do not like what someone has to say, what they believe, or want to talk with them, than why seek someone out to do so? It felt like an attack. I know this person has been dealing with a lot and I tried keeping the letter honest and tell her that I appreciated her, but also tried to be honest with what I was dealing with as well. You should not be tearing others down because you are stressed or do not like their beliefs or how they handle life's circumstances. I also tried explaining to her that through many counseling sessions I have learned that it is very cliched to tell someone because someone else is worse off you should be happy. It is sad that others suffer, but it does not make your struggle easier or less important. Again, she disagreed. I told her she is allowed to believe what she wants, she is allowed to express herself how she pleases as am I. People are different and handle things differently and that it okay, but to come after someone and criticize them, attack what they are doing only, tears them down. It has not been the first time this has happened, where she has lashed out or sniped at me.
I know that I may not be happy all the time, but God didn't promise happiness, He promised joy. I also know that I am human and can only do my best. I try to be honest with myself and my feelings and right now, I am healing. I can only do what is best for me. I can not make decisions about my life on the basis of others. I did my best not to get angry with her, but tried only to support her. She is dealing with serious issues, but so I am. I try my best to be honest, but sometimes it may take time for me to be strong enough to disclose all the details and some I may never will and that is my choice. But, please don't tear down others. There are enough people to do that, but rather we should lift others up through our words and actions. I will let her be, told her I would always be there if she needed support, but it still leaves a sore spot.
I tried explaining to her that my blog and Facebook page were my outlets to express how I feel. I also tried explaining that it is not someone else's place to tell me how I felt, what I thought or believed. Yes, prior to my FO I was nervous, scared, doubting if it would work. All of which are normal. I was even more anxious by the fact this was a surgery to fix a previous "over-correction." It had been a long two years and I was nervous about the results, etc. I wanted and pushed for the surgery because all other options had failed. My parents helped pay for large portions, even used a bonus my dad received from work. This was the last real hope we had to make my right hip function better and decrease pain. So, I found it hard to listen to someone that was trying to tell me what I was thinking, when I was doing anything I could to get better. We are also in two very different places in our lives and have different experiences. Those experiences shape how you handle certain situations.
I have tried to be honest with how I have felt and express those feelings. I try not to put a facade on just to seem happy for the sake of others. It does more harm than good. Recently, my dad found this article in American Family Association Journal. It was about pain, healing and joy. I know I have been struggling with faith recently, but this definitely hit home and related perfectly to the situation I was going through with my friend. Excerpts I found especially helpful were "...Pain is natural and we are designed to feel it. That is where our sense of compassion comes from. We have to trust that God will bring us from a place of current pain to a place of healing and from there to a place of joy." "...We all know happiness, sadness, anger, joy and contentment. We run into more trouble we we try to act as though we do not have the negative feelings than when we intentionally own them. While "owning our feelings" may sound like New Age mumbo jumbo, there is scriptural support for the concept. It's called honesty. We are called to be honest with ourselves, with God and with others, even when it comes to how we feel. David, Job and Jeremiah all got angry with God, asking whether He could see their infirmities or if He was even paying attention at all. God did not strike them dead for being honest with how they felt. In fact, more times than not, He patiently listened and then helped them see things through his perspective. He would let them know that He was still in control and, while they were not aware of it, their suffering was but one step toward finding eternal joy."
I tried explaining to her that not only was I trying to express myself as a way of stress relief, but I was also healing. The last few years have been an intense journey and their were numerous things that I was healing from physically, mentally, emotionally and even, spiritually. It was also a shock to me because I was not trying to contact her with questions or trying to dump my problems onto her, but only expressing myself through my own outlets. It felt more like an unnecessary attack. After the Facebook responses to a posting, she texted me which is where I tried explaining these things. It was not successful, so I emailed her a letter of why I believed what I did and what I had gone through in hopes she would be able to understand more of where I was coming from, but it didn't work. I casually asked her the following day if she got my letter and it went south from there. I was told that all I talk about is myself and how I have had a lot to deal with everyday, everywhere. That I was not a positive person and that it wore on her. I was very upset at this point. I poured my heart out to her in a letter and again was attacked. Others tried telling me that when people lash out like that it is because of insecurities they have with themselves. That may be true. She may be lonely or scared, but that is why I tried telling her that is was okay to express yourself.
It is not someone else's place to tell you how to express yourself, to tell you how you have felt, believed or what to believe. I had not sought her ought, but instead she commented to me. If you do not like what someone has to say, what they believe, or want to talk with them, than why seek someone out to do so? It felt like an attack. I know this person has been dealing with a lot and I tried keeping the letter honest and tell her that I appreciated her, but also tried to be honest with what I was dealing with as well. You should not be tearing others down because you are stressed or do not like their beliefs or how they handle life's circumstances. I also tried explaining to her that through many counseling sessions I have learned that it is very cliched to tell someone because someone else is worse off you should be happy. It is sad that others suffer, but it does not make your struggle easier or less important. Again, she disagreed. I told her she is allowed to believe what she wants, she is allowed to express herself how she pleases as am I. People are different and handle things differently and that it okay, but to come after someone and criticize them, attack what they are doing only, tears them down. It has not been the first time this has happened, where she has lashed out or sniped at me.
I know that I may not be happy all the time, but God didn't promise happiness, He promised joy. I also know that I am human and can only do my best. I try to be honest with myself and my feelings and right now, I am healing. I can only do what is best for me. I can not make decisions about my life on the basis of others. I did my best not to get angry with her, but tried only to support her. She is dealing with serious issues, but so I am. I try my best to be honest, but sometimes it may take time for me to be strong enough to disclose all the details and some I may never will and that is my choice. But, please don't tear down others. There are enough people to do that, but rather we should lift others up through our words and actions. I will let her be, told her I would always be there if she needed support, but it still leaves a sore spot.
Monday, November 14, 2011
A Daily Battle
I have been definitely struggling more lately. I do my PT exercises everyday, but have hit a plateau. I am hoping to hear back from Millis very soon because I am sure that the plate is contributing to that. It also causes issues with the IT band and pulls the leg more inward. All which I was told about prior to surgery. I knew that the plate was not going to be comfortable as I was told, but it seems that its more like stabbing, throbbing pain. It may alsoe be the cause of my femoral nerve pain, which was not a problem prior to the FO. Needless to say, I WANT THE PLATE OUT! At this point, I don't even care if the bone is completely healed. I say that now primarily because I am frustrated and can only handle this level of pain for so long. I seem to be pushed from one doctor to another and I feel as if no one wants to take my case because of all the issues. Even my local OS, who has done 3 prior surgeries with me, does not want to do my hardware removal, despite the suggestion from Millis.
I saw a THR doc today. It was a referral from my pain doc. My pain doc, Dr. Wright, was able to locate my sources of pain through a series of blocks. He did the first under fluoroscopy and into the joint space. It relieved about 60% of my pain. Then, he did a femoral branch nerve block and that took away the rest of the pain in my right hip/leg. He wanted a second opinion about his findings so sent me to a colleague in hopes that a THR would be an option to help with the pain and improve function. The appointment was an EPIC FAIL! It did not go as I thought or expected. He seemed nice, but did not have the greatest bedside manor. He didn't seem to understand what I was going through or the pain that I was having. He did not think I was a candidate for a THR. It wasn't that I am too young or even that the plate is still in, but that because of the FO. The FO changed the position of my femur, which I knew. I did not know that because of the angle of the new position it would take away the possibility of a THR in any realistic terms. When the plate comes out and if the joint pain remains as it has been then I would need a custom piece made me for, which he stated would cost tens of thousands of dollars for the implant alone OR my femur would have to be re-broken. Wow! I was not aware that my FO would take away the possibility for a THR in the future. This is definitely on the top of the list of things I need to discuss with Millis. I am more than over this process and ready to have some sense of normalcy back in my life. I spend waay too much time in doctor's offices, PT, diagnostics, procedures, etc. A break would be nice and NOT a break in my bone lol
I left the appointment with more questions than answers. It is all waiting on what Millis will say and what we can work out. Although Maiers said he is not comfortable doing the hardware removal, it may be my only option at this point. Millis suggested that it was a simple procedure he was more than capable of doing. I just can not financially fly out to Boston at this time, but the pain is so intense I want the plate to come out to definitively determine the source(s) of my pain. We can not even begin to work on the left till the right is stable and as of last week, my left hip has less joint space than the right. It has been the leg being used to compensate for over the past 2 years. I emailed Millis again this afternoon and am keeping my fingers crossed for a call in the next couple days!
My shoulder and wrist could also use a break. My left shoulder, wrist and hip are definitely "shouldering" the burden. No pun intended, ha! My left shoulder has always been the worse of the 2 because of a severe dislocation in high school, but lately has been subluxating a lot more. About a week ago my left wrist gave out while getting things out of my car and my body weight fell onto my wrist hyper-extending it. That did hurt for quite awhile. I use a supportive brace that still allows me to grip the crutch.
More concerning than the skeletal issues are the constant headaches I have been having for the past 3 or so weeks. I continue to get visual disturbances. They started in June, prior to my FO. I thought it was a freak thing, but they are becoming more frequent. They are temporary periods of blindness. It is not dark, but fuzzy and unable to distinguish anything. They are short-term, but not normal. I saw my ophthalmologist in June when they first happened and he could not find anything major at that time, but it may be time for another visit. We do know that it is not a prescription issue and the headaches are not eye related, as of now. I have also been having bouts with some intense nausea. It is not a fun thing to have, but zofran seems to help that. It may be time for another trip to the PCP!
I have been feeling very stressed trying to manage everything: school, work, medical issues, financial issues, etc. Work can be difficult because of so many appointments or just not physically being able to get there that day. School is another issue because my school does not accommodate very well. I just had a meeting with our school's ADA service and even they admitted that the school, especially my program, was particularly poor in dealing with these issues. They the professors "do what they want." That makes it very difficult to get help with missed assignments, extensions, even a safe place to sit in the class. Finances always seem to be a struggle, but lately even more so than usual. My family is stretched very thin with little reserve to help because they have helped so much already. I am not fighting for social security disability and will be filing for VA disability to help supplement the income I can not make working or when I have surgeries or procedures done. I am hoping that will help ease the burden and stress a bit.
It has been a lot to struggle with, but I am grateful for my family and close friends and of course, my pup, Chloe! My family and friends help hold me up when I am not strong enough, encourage me and give me an abundance of love. For that, I am truly grateful. I have been very blessed with some amazing people (and aussie shepherd) in my life!
I saw a THR doc today. It was a referral from my pain doc. My pain doc, Dr. Wright, was able to locate my sources of pain through a series of blocks. He did the first under fluoroscopy and into the joint space. It relieved about 60% of my pain. Then, he did a femoral branch nerve block and that took away the rest of the pain in my right hip/leg. He wanted a second opinion about his findings so sent me to a colleague in hopes that a THR would be an option to help with the pain and improve function. The appointment was an EPIC FAIL! It did not go as I thought or expected. He seemed nice, but did not have the greatest bedside manor. He didn't seem to understand what I was going through or the pain that I was having. He did not think I was a candidate for a THR. It wasn't that I am too young or even that the plate is still in, but that because of the FO. The FO changed the position of my femur, which I knew. I did not know that because of the angle of the new position it would take away the possibility of a THR in any realistic terms. When the plate comes out and if the joint pain remains as it has been then I would need a custom piece made me for, which he stated would cost tens of thousands of dollars for the implant alone OR my femur would have to be re-broken. Wow! I was not aware that my FO would take away the possibility for a THR in the future. This is definitely on the top of the list of things I need to discuss with Millis. I am more than over this process and ready to have some sense of normalcy back in my life. I spend waay too much time in doctor's offices, PT, diagnostics, procedures, etc. A break would be nice and NOT a break in my bone lol
I left the appointment with more questions than answers. It is all waiting on what Millis will say and what we can work out. Although Maiers said he is not comfortable doing the hardware removal, it may be my only option at this point. Millis suggested that it was a simple procedure he was more than capable of doing. I just can not financially fly out to Boston at this time, but the pain is so intense I want the plate to come out to definitively determine the source(s) of my pain. We can not even begin to work on the left till the right is stable and as of last week, my left hip has less joint space than the right. It has been the leg being used to compensate for over the past 2 years. I emailed Millis again this afternoon and am keeping my fingers crossed for a call in the next couple days!
My shoulder and wrist could also use a break. My left shoulder, wrist and hip are definitely "shouldering" the burden. No pun intended, ha! My left shoulder has always been the worse of the 2 because of a severe dislocation in high school, but lately has been subluxating a lot more. About a week ago my left wrist gave out while getting things out of my car and my body weight fell onto my wrist hyper-extending it. That did hurt for quite awhile. I use a supportive brace that still allows me to grip the crutch.
More concerning than the skeletal issues are the constant headaches I have been having for the past 3 or so weeks. I continue to get visual disturbances. They started in June, prior to my FO. I thought it was a freak thing, but they are becoming more frequent. They are temporary periods of blindness. It is not dark, but fuzzy and unable to distinguish anything. They are short-term, but not normal. I saw my ophthalmologist in June when they first happened and he could not find anything major at that time, but it may be time for another visit. We do know that it is not a prescription issue and the headaches are not eye related, as of now. I have also been having bouts with some intense nausea. It is not a fun thing to have, but zofran seems to help that. It may be time for another trip to the PCP!
I have been feeling very stressed trying to manage everything: school, work, medical issues, financial issues, etc. Work can be difficult because of so many appointments or just not physically being able to get there that day. School is another issue because my school does not accommodate very well. I just had a meeting with our school's ADA service and even they admitted that the school, especially my program, was particularly poor in dealing with these issues. They the professors "do what they want." That makes it very difficult to get help with missed assignments, extensions, even a safe place to sit in the class. Finances always seem to be a struggle, but lately even more so than usual. My family is stretched very thin with little reserve to help because they have helped so much already. I am not fighting for social security disability and will be filing for VA disability to help supplement the income I can not make working or when I have surgeries or procedures done. I am hoping that will help ease the burden and stress a bit.
It has been a lot to struggle with, but I am grateful for my family and close friends and of course, my pup, Chloe! My family and friends help hold me up when I am not strong enough, encourage me and give me an abundance of love. For that, I am truly grateful. I have been very blessed with some amazing people (and aussie shepherd) in my life!
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