What I mean by, "It is that time of year again," is that it is Wedding Season. I feel like by now the weddings should be slowing down, but they definitely are not. Last year I went to six weddings.
This year I have had roughly the same amount, however I have had to cancel out of two of them because of how sick I was. Both of these decisions have been hard and I waited until last minute because I very much wanted to be there. I have spent a lot of time recently crying as depression has begun to rule my life and everything about it. Including what I do.
Now there are other contributors to this effect as well. I am not sleeping, literally, I did not sleep one minute last night. My pain has been horrible, I don't move around too well and I have very little energy.
I still have my PICC line in and over the next two weeks have a pretty grueling schedule of doctor appointments coming up. I do hope that my team of doctors can do more to help get me to a better place. I do hope that getting rid of the infection will be one of the first starts to this whole progression.
Sometimes it is so hard to look up, to get out of bed or even leave the house. I feel that the little person inside me wants to get out and just can't.
I wonder where to pick up from and I am not able to seem to find it.
This blog details my diagnosis of IC and severe chronic pelvic pain. Thoughts outlined here are my own and these experiences are how I am coping with and learning to live with my diagnosis.
Showing posts with label trying to survive my own life.. Show all posts
Showing posts with label trying to survive my own life.. Show all posts
Monday, June 10, 2013
Tuesday, May 21, 2013
And you know you have a problem when...
ALL YOU DO IS GO TO THE DOCTORS!
You know I have gotten use to the whole weekly or bi-weekly treatments I was getting. Right now those days are long gone until this infection takes a hike up the river.
I went to the infectious disease doctor today and they took some samples and decided that I am still staying on IV antibiotics for another 7-10 days along with the other antibiotics that I am on.
Right now I am so sick of medicine. I fall asleep for no reason during the day, everything hurts and makes everything else worse.
I feel like I really do live in a hole, one that I can't crawl out of. I want to cry all of the time, because everything is so dam overwhelming.
I just don't know what to do anymore. I have no social life and all of my friends well I only get to see them if I am visiting for doctors appointments. I am not fully sure the last time I really went out and had a good time. I am worried about not being able to go to a very close friends wedding in a few weeks, because I cannot fly to get there. I want an escape from what has turned into my reality.
These past two years have been a literal hell for me. I know that at some point I will catch a break, and they always say you hit your break when you are at your all time low. Well I am at that all time low and I am reaching as far as I can to get out.
Now there are a few things that make me different where people can see something is wrong on the outside: the pain in my face, my walking cane for balance and the PICC line in my right arm.
Disability takes on many forms and this is mine: chronic severe pelvic pain coupled with a horrible infection in my left leg right now. Along with numerous other things including very severe depression.
You know I have gotten use to the whole weekly or bi-weekly treatments I was getting. Right now those days are long gone until this infection takes a hike up the river.
I went to the infectious disease doctor today and they took some samples and decided that I am still staying on IV antibiotics for another 7-10 days along with the other antibiotics that I am on.
Right now I am so sick of medicine. I fall asleep for no reason during the day, everything hurts and makes everything else worse.
I feel like I really do live in a hole, one that I can't crawl out of. I want to cry all of the time, because everything is so dam overwhelming.
I just don't know what to do anymore. I have no social life and all of my friends well I only get to see them if I am visiting for doctors appointments. I am not fully sure the last time I really went out and had a good time. I am worried about not being able to go to a very close friends wedding in a few weeks, because I cannot fly to get there. I want an escape from what has turned into my reality.
These past two years have been a literal hell for me. I know that at some point I will catch a break, and they always say you hit your break when you are at your all time low. Well I am at that all time low and I am reaching as far as I can to get out.
Now there are a few things that make me different where people can see something is wrong on the outside: the pain in my face, my walking cane for balance and the PICC line in my right arm.
Disability takes on many forms and this is mine: chronic severe pelvic pain coupled with a horrible infection in my left leg right now. Along with numerous other things including very severe depression.
Tuesday, May 14, 2013
An update on what my life now is...
Honestly I don't even know where to start on this right now, but I need to clear my head and just try and get this out.
My surgery back in April resulted in a bad infection, one we are still trying to narrow down. I went back in three weeks later for another surgery where they flushed my leg out with solution and medication. I have a PICC line installed and am taking IV antibiotics. I will be working directly with the home health care here.
After a month and a half of this going back and forth my doctor has decided it is best for me to be down here and make sure we get everything taken care of. So between dealing with my surgeon, the infectious disease doctor, and the hospital.
I am so thankful for my very helpful friends who live in the DC area, who allow me to stay at their houses because I really do not know how I would do this without them.
I go to doctors constantly, I feel the my life is just going to the doctors. I feel like I can barely keep it all straight any more. I feel horrible mentally and physically. My body is just so tired of trying to fight what is going on that I feel that it doesn't want to do this any more.
So now I am looking at finding a place for next week and looking to get fully treated by the best doctors I can get to, here in the DC area.
My life needs a change, my body needs rest (I feel like I sleep the best when they put me under anesthesia), and if there was any time to take vacation from everything in life, it would be right now.
I know there are more things I want to say, but right now I think my brain is still trying to process it all. One of the hardest things in the world is going from being a fast paced, fun loving person to someone who lives in a deep depression and in constant pain. Your life changes so drastically. I know I am now alone out there, but it is probably one of the hardest things in the world to admit.
This is not something any of us should take lightly no matter what health issue we have. IC can control your life, pain can, nerves, some of the tiniest parts of our body can just make us miserable and you cannot stop until you find out how to fix it. It may be exhausting, but DON"t give up no matter how much you may want to. I have to tell myself this daily and I will continue to until I am me again.
My surgery back in April resulted in a bad infection, one we are still trying to narrow down. I went back in three weeks later for another surgery where they flushed my leg out with solution and medication. I have a PICC line installed and am taking IV antibiotics. I will be working directly with the home health care here.
After a month and a half of this going back and forth my doctor has decided it is best for me to be down here and make sure we get everything taken care of. So between dealing with my surgeon, the infectious disease doctor, and the hospital.
I am so thankful for my very helpful friends who live in the DC area, who allow me to stay at their houses because I really do not know how I would do this without them.
I go to doctors constantly, I feel the my life is just going to the doctors. I feel like I can barely keep it all straight any more. I feel horrible mentally and physically. My body is just so tired of trying to fight what is going on that I feel that it doesn't want to do this any more.
So now I am looking at finding a place for next week and looking to get fully treated by the best doctors I can get to, here in the DC area.
My life needs a change, my body needs rest (I feel like I sleep the best when they put me under anesthesia), and if there was any time to take vacation from everything in life, it would be right now.
I know there are more things I want to say, but right now I think my brain is still trying to process it all. One of the hardest things in the world is going from being a fast paced, fun loving person to someone who lives in a deep depression and in constant pain. Your life changes so drastically. I know I am now alone out there, but it is probably one of the hardest things in the world to admit.
This is not something any of us should take lightly no matter what health issue we have. IC can control your life, pain can, nerves, some of the tiniest parts of our body can just make us miserable and you cannot stop until you find out how to fix it. It may be exhausting, but DON"t give up no matter how much you may want to. I have to tell myself this daily and I will continue to until I am me again.
Wednesday, April 24, 2013
A long over due update
I just realized that I had not blogged about how things have been going since the surgery, that really speaks to my state of mind lately as I barely remember what day it is.
First off, I must say that I have absolutely wonderful and amazing friends, I really do not know what I would do without them. Going through this whole process alone is hard and to my friend Angela and her family who opened up their home to me and took me to appointments for close to two weeks, I really can't give enough thanks. Those first two weeks were so difficult, especially after I came down with the infection. Truthfully at that point all I wanted to do is cry. I am always in pain, but that truly took things over the top.
To my friend Terra who has been with me since and essential been my chauffeur to many appointments and making sure I have what I need while at home has been a huge help these past few weeks as well. I don't know what I am going to do when I am back on my own. Hopefully by then I have the strength and I am able to do things on my own.
The surgery so far from what we can tell was successful. The doctor found a lot of scar tissue in the area and also one of my nerves that had separated into two nerves. They were able to properly decompress the nerves and now it is just an action of how the healing goes.
Unfortunately a few days after the surgery I noticed a red area, that at first I thought I had just left the ice on a little too long. The next day I knew that was not the case as my entire leg was red. The next thing I knew my leg was so swollen I could not put my underwear on, which completely freaked me out. (nothing about surgery is glamorous that is for sure).
I spent about a week and a half down in the DC area, before I returned home. Since then I have had even more appointments between my specialist and my surgeon. The stitches are now out, however the wound is not healed so I am working daily to steri-strip it myself and make sure nothing happens to it. Thank goodness for my first aid training and slight background in athletic training.
Frustration is a big word too. Everything gets to me because I can't do it. I can't pick things up off the ground if I drop something. I can't drive, I can't go up and down stairs unless someone is here to watch me. The one time that I did it alone, I fell.
So the healing process has been hard, the next step right now is physical therapy. I will start that on Thursday and hopefully that begins to help.
I must say our bodies are amazing, because these three little nerves are causing me such agony and making everything so much harder to do. I will get through it, but it is not easy. That of course I already knew being that I have been dealing with this since August 2011.
Right now trying to find the positive in things is very hard, but I am really working on it. I try each day to look in a positive light even though it feels so hard.
Wednesday, April 3, 2013
Crying: Inside and Out
Alright, so I am not a big emotional person, I especially hate showing any emotion to people at all that shows signs of weakness and vulnerability. What I do know, even a midst the anti-depressants I am on, I am still very depressed.
Last night after work I went to the gym and walked on the treadmill for 30 minutes, I figure well it is my last week I need to do something. By the time I got home I wanted to do nothing at all but lay in bed, which is exactly what I did.
Although I really didn't just lay in bed, I did watch some TV and I blogged about all of this right now. Then I just started crying because I literally feel like the world is crashing in on me when I am behind closed doors and in my "safe zone."
I can function enough to get through the day at work, I may not be as productive as I like, but I can do it. What I can't seem to do is anything else. My body wants so bad to feel just okay... or closer to normal than what I do now. My mind wants to be that happy, fun and fearless thirty-one year old that I truly am. Right now I am not that person and that is not alright with me at all.
There has been a lot of talk about people with conditions lately, all I can say that depression should not be taken lightly it is a real thing. I would say more people are depressed and are not undergoing some type of treatment from a physician... they should be. We need to take mental illness seriously, it should not be frowned upon by society. It is a real condition, that needs real help. I would go as far as saying I am no where near as serious as some people, but I can tell that I am not alright.
Last night after work I went to the gym and walked on the treadmill for 30 minutes, I figure well it is my last week I need to do something. By the time I got home I wanted to do nothing at all but lay in bed, which is exactly what I did.
Although I really didn't just lay in bed, I did watch some TV and I blogged about all of this right now. Then I just started crying because I literally feel like the world is crashing in on me when I am behind closed doors and in my "safe zone."
I can function enough to get through the day at work, I may not be as productive as I like, but I can do it. What I can't seem to do is anything else. My body wants so bad to feel just okay... or closer to normal than what I do now. My mind wants to be that happy, fun and fearless thirty-one year old that I truly am. Right now I am not that person and that is not alright with me at all.
There has been a lot of talk about people with conditions lately, all I can say that depression should not be taken lightly it is a real thing. I would say more people are depressed and are not undergoing some type of treatment from a physician... they should be. We need to take mental illness seriously, it should not be frowned upon by society. It is a real condition, that needs real help. I would go as far as saying I am no where near as serious as some people, but I can tell that I am not alright.
Tuesday, April 2, 2013
One Week Away
So my doctor's clearance have been given and my surgery is a go for next week.
What is not a go for next week:
What is not a go for next week:
- How I am getting to DC
- My sanity/mental health
- My body
I am going to try and get in the gym as much as possible this week, however I spent 30 minutes on the treadmill today and well my body hates me. I decided I have one week left of walking so I figured I would jog for a minute... I am sure I looked ridiculous, felt ridiculous and I will completely pay for that decision later.
Sometimes I really wonder how I get through my daily life, the past two weeks have really been hard now that season is over and this is what I have to focus on I think it is digging at me even more.
You know you think being a grown up when you are a kid is going to be awesome... I hate to tell my 10 year old self this... however being an adult SUCKS! Maybe I would have told myself not to play sports (probably not), not to push myself (probably not either), not to be a perfectionist (I don't think I had any say in that), and ultimately I think I would just said have more fun and be a dam kid!
Of course it is so hard to really know what you would really do, but I guess it could be fun to think. Heck even when I was 22, I would have never thought my life would end up where it is now. I wanted to be fearless, but I will tell you what stops that quickly, A LIFE CHANGING EVENT that makes you scared, in pain and miserable all the time.
My fearless I can take on the world, or at least a huge wrestling tournament can still come out and play, but I am just not the same me. I am much more reserved, I can't do what I use to, I have to admit that I am able to be taken down, which lands me in the training room getting treatment or barely moving.
I feel like my stance on everything has changed so much since August 2011, which partially makes me hate myself, because I am not myself. The truth is I don't know if I ever will be myself again. I hope to, I will strive to, but I really don't know if I will ever be there again.
What I feel now is just plain broken. In no other words, broken. I don't think I have ever cried this much in my entire life. I guess we can count a little progress I can talk about some of my treatments without crying like a baby, sometimes.
Wednesday, March 27, 2013
That point where you start freaking out
Okay, maybe I should say that point where I start freaking out. I had my weekly appointment today which I knew was not going to be great, I was right. It hurt, getting touched hurts. I hate that a year after being diagnosed I still can't be touched.
I talked with the doctor and told him I have a call with the surgeon on Friday to go over the particulars, I told him I am just feel a lot of uncertainty going into everything. Worse than my first surgery.
I had a little bit of a meltdown in the car and I am sure I will have others in the next two weeks, I am trying to line people up to take care of me and get things covered from my end but in the end this whole thing sucks!
I talked with the doctor and told him I have a call with the surgeon on Friday to go over the particulars, I told him I am just feel a lot of uncertainty going into everything. Worse than my first surgery.
I had a little bit of a meltdown in the car and I am sure I will have others in the next two weeks, I am trying to line people up to take care of me and get things covered from my end but in the end this whole thing sucks!
Tuesday, March 26, 2013
Whirlwind of a Month
I tell you what every year the month of March goes by faster and faster, it seems like before I know it, we are at NCAA's and then wrestling season is over. I tell you what, making it through last week was nothing short of a miracle for how my body felt. I have to once again be very thankful for wonderful athletic trainers who were there to help me when I needed some treatment to help me get through the day, this literally was a daily ordeal.
I should say that traveling just seems to make symptoms and pain worse, I think it puts my anxiety through the roof as well. I know I can get through it, but it is not my favorite thing to do right now. If it was fully up to my doctor I would not be traveling and we have had that discussion. Luckily now the season is done so that I can hopefully have the time to heal.
So for a minute let's just talk about NCAA Wrestling. I cannot say in words fully how much I love the sport of wrestling and why, but it is something that has kept me around for 23 years of my life and I would not change that at all. I was able to see history made again only in a different way. There have only ever been three 4 time National Champions. I saw Cael Sanderson go 159-0 with four titles and I was able to see Kyle Dake win his fourth title at four different weight classes. He is just such a dominant wrestler and is going to do great things for the sport of wrestling. He gets it... especially right now with the 2020 Olympic situation, he will be a great young spokesman for our sport.
Wrestling people are just fantastic people and fans... because we are all there for the same reason. I was able to see such people as: Billy Baldwin, Steven Neal, Bruce Baumgartner, Dan Gable, Congressman Jim Jordon, Former Speaker of the House Dennis Hastert and even Senator John McCain. I am sure I left a lot of people out, but people of all ages love the sport of wrestling. It has made them who they are today, because of the lessons learned. I may have never have stepped on the mat, but I feel that I am part of this family. I hope that through my love of the sport I have at least rubbed that off on a few people that did not ever watch the sport.
Anyhow now that I am back and trying to rest while my body gets back to normal, I must now prepare and get everything ready for surgery. I don't feel I am ready, I feel that my emotions are all over the place. For the third time in a year I am going to have to rehab myself back to as close to normal as possible and pray that this is the last surgery I will need. I know that all of this has brought about many life changes for my future, I know there are still some changes that I need to make going forward that will allow me to heal and become a better, stronger person. Sometimes things just feel so overwhelming to deal with, it doesn't seem like they are in reach at all.
So next up, is the surgery update and there will be much more to come on that I am sure.
I should say that traveling just seems to make symptoms and pain worse, I think it puts my anxiety through the roof as well. I know I can get through it, but it is not my favorite thing to do right now. If it was fully up to my doctor I would not be traveling and we have had that discussion. Luckily now the season is done so that I can hopefully have the time to heal.
So for a minute let's just talk about NCAA Wrestling. I cannot say in words fully how much I love the sport of wrestling and why, but it is something that has kept me around for 23 years of my life and I would not change that at all. I was able to see history made again only in a different way. There have only ever been three 4 time National Champions. I saw Cael Sanderson go 159-0 with four titles and I was able to see Kyle Dake win his fourth title at four different weight classes. He is just such a dominant wrestler and is going to do great things for the sport of wrestling. He gets it... especially right now with the 2020 Olympic situation, he will be a great young spokesman for our sport.
Wrestling people are just fantastic people and fans... because we are all there for the same reason. I was able to see such people as: Billy Baldwin, Steven Neal, Bruce Baumgartner, Dan Gable, Congressman Jim Jordon, Former Speaker of the House Dennis Hastert and even Senator John McCain. I am sure I left a lot of people out, but people of all ages love the sport of wrestling. It has made them who they are today, because of the lessons learned. I may have never have stepped on the mat, but I feel that I am part of this family. I hope that through my love of the sport I have at least rubbed that off on a few people that did not ever watch the sport.
Anyhow now that I am back and trying to rest while my body gets back to normal, I must now prepare and get everything ready for surgery. I don't feel I am ready, I feel that my emotions are all over the place. For the third time in a year I am going to have to rehab myself back to as close to normal as possible and pray that this is the last surgery I will need. I know that all of this has brought about many life changes for my future, I know there are still some changes that I need to make going forward that will allow me to heal and become a better, stronger person. Sometimes things just feel so overwhelming to deal with, it doesn't seem like they are in reach at all.
So next up, is the surgery update and there will be much more to come on that I am sure.
Tuesday, February 26, 2013
IC + Severe Nerve Pain = Disaster
I was thinking about this the other day and I realized that it has been just under one year since I was diagnosed with IC. I had surgery on March 29th and my condition worsened drastically, I then found a specialist and was diagnosed around April 18th with a long list of conditions starting with IC.
So nearing a year I feel as though I have been put on more medications to try and help, I am currently still seeking weekly treatments from my doctor and I still don't feel like myself. I have definitely had to become a stronger person this year. Although I know I am strong and can take on the world, this has really tested my mind and body.
I ran a large tournament in Minnesota this past weekend which meant plane travel and long hours, before the tournament started I had to ask the Athletic Trainer if I could have some treatment so I could make it through the day. So here I was before my own event on the table getting heat to try and calm my pain down and explain what was going on. I have to say I have always been blessed to have great Athletic Trainers around me, because of my job in sports, they really do a great job and are caring people.
I found this today and I wanted to share it because it is so true and it reminds me of this journey that I am on, especially as I look towards another surgery in early April.
So nearing a year I feel as though I have been put on more medications to try and help, I am currently still seeking weekly treatments from my doctor and I still don't feel like myself. I have definitely had to become a stronger person this year. Although I know I am strong and can take on the world, this has really tested my mind and body.
I ran a large tournament in Minnesota this past weekend which meant plane travel and long hours, before the tournament started I had to ask the Athletic Trainer if I could have some treatment so I could make it through the day. So here I was before my own event on the table getting heat to try and calm my pain down and explain what was going on. I have to say I have always been blessed to have great Athletic Trainers around me, because of my job in sports, they really do a great job and are caring people.
I found this today and I wanted to share it because it is so true and it reminds me of this journey that I am on, especially as I look towards another surgery in early April.
Thursday, January 31, 2013
What a day, 397 miles traveled, 2 appointments
So yesterday I had two appointments one was in Silver Spring, MD and the other in Bethlehem, PA.
I left my house before 6 am and did not make my appointment in Silver Spring due to horrible traffic on the Beltway. I got there 45 minutes late which they worked me into the schedule since I called and told them I was having issues. I am extremely lucky to have doctors that are so understanding.
So besides being extremely frustrated from traffic, being that I already have all of these crazy problems... it just adds to my severe pain. The surgeon was pleased with my EMG results from last week, because the function of muscles and nerves in my left leg are normal. What is not normal however are the sensory nerves that are in my groin area, where I always have pain. So we discussed what options were out there for a long-term solution to getting myself out of this pain. That lead us to where the doctor was expecting to go which is a nerve decompression.
Of course it is not normal to want to have to get cut open again, but in this case I want to be out of pain so bad that I will take making it worse to get better. That is what happened with my surgery in September so I have a good outlook on this even though it is an extra stress to my life right now in the busiest part of my work year. I have scheduled the surgery for April 9th and will have a long recovery. The good news is that the doctor does want me exercising, I can continue walking on the treadmill and I am to add swimming two times a week as well. He wants me to strengthen my body as much as I can, even though I am not allowed to lift or do anything too strenuous.
I was warned in advance that the surgery will be invasive and it will be painful, I am to expect a lot of pain after and that my physical therapy after will also be difficult.
Then I had the drive to Bethlehem, which was long and miserable. I had the worst case of road rage ever as I was worried I would be late to my appointment, I made it just in time which was good. In the mean time I had an issue with work and I had to find a Starbucks to get the internet. I was just stressed in every way possible.
At my second appointment of the day, I talked with the doctor and we altered some of my medications to try and help in the mean time, which makes me feel kind of foggy today (it probably doesn't help much that I did not sleep well and then hit the gym at 5 am). The doctor feels that he thinks that having this surgery will help calm everything else down as it is so painful right now. So I will continue getting treatments as well in the mean time.
I then talked with my doctor on how hard this is to try and talk to people about, because I just don't feel that people fully understand how miserable this feeling really is. He said that is extremely common from his patients and that it is something hard to explain and for people to understand. He once again told me however that this is something that is more common that we think when it comes to the IC and the issues within the pelvic floor (I have other issues going on as well, see the surgery remarks above).
I wish it was easier to talk about and for people to truly understand the pain that this causes. This will be my 3rd surgery in a year's time.
Right now I need to focus on everything else I have going on and in the mean time just try and make sure I am taking care of myself.
I left my house before 6 am and did not make my appointment in Silver Spring due to horrible traffic on the Beltway. I got there 45 minutes late which they worked me into the schedule since I called and told them I was having issues. I am extremely lucky to have doctors that are so understanding.
So besides being extremely frustrated from traffic, being that I already have all of these crazy problems... it just adds to my severe pain. The surgeon was pleased with my EMG results from last week, because the function of muscles and nerves in my left leg are normal. What is not normal however are the sensory nerves that are in my groin area, where I always have pain. So we discussed what options were out there for a long-term solution to getting myself out of this pain. That lead us to where the doctor was expecting to go which is a nerve decompression.
Of course it is not normal to want to have to get cut open again, but in this case I want to be out of pain so bad that I will take making it worse to get better. That is what happened with my surgery in September so I have a good outlook on this even though it is an extra stress to my life right now in the busiest part of my work year. I have scheduled the surgery for April 9th and will have a long recovery. The good news is that the doctor does want me exercising, I can continue walking on the treadmill and I am to add swimming two times a week as well. He wants me to strengthen my body as much as I can, even though I am not allowed to lift or do anything too strenuous.
I was warned in advance that the surgery will be invasive and it will be painful, I am to expect a lot of pain after and that my physical therapy after will also be difficult.
Then I had the drive to Bethlehem, which was long and miserable. I had the worst case of road rage ever as I was worried I would be late to my appointment, I made it just in time which was good. In the mean time I had an issue with work and I had to find a Starbucks to get the internet. I was just stressed in every way possible.
At my second appointment of the day, I talked with the doctor and we altered some of my medications to try and help in the mean time, which makes me feel kind of foggy today (it probably doesn't help much that I did not sleep well and then hit the gym at 5 am). The doctor feels that he thinks that having this surgery will help calm everything else down as it is so painful right now. So I will continue getting treatments as well in the mean time.
I then talked with my doctor on how hard this is to try and talk to people about, because I just don't feel that people fully understand how miserable this feeling really is. He said that is extremely common from his patients and that it is something hard to explain and for people to understand. He once again told me however that this is something that is more common that we think when it comes to the IC and the issues within the pelvic floor (I have other issues going on as well, see the surgery remarks above).
I wish it was easier to talk about and for people to truly understand the pain that this causes. This will be my 3rd surgery in a year's time.
Right now I need to focus on everything else I have going on and in the mean time just try and make sure I am taking care of myself.
Wednesday, January 23, 2013
I haven't written in a while
I tell you what sometimes life just gets the best of you. I have been so busy lately, with work and going to the doctors that I don't feel like I am ever home. My bedroom shows this as it is a disaster!
Anyhow I am still in the rat race of trying to get better although it just seems to keep circling around. I started working out this week, I did 30 minutes on the treadmill... so that is something. I don't know what the future seems to hold for my body, although I am hoping for better results in 2013 than I have had the past two years.
I am still on all of the medication, part of me wonders if stopping it to see what it would do would be a bad idea or a good one. I would level on the side of bad from the one time I forgot to take it.
All I want is to feel normal again and feel like I can actually do things like a normal person. This is something that I really have yet to feel I have experienced. My weight is higher than it has been in a long time, not being able to have physical activity really messed with that especially over the holidays.
Part of me is thinking going back to PT a few times a month may not be a bad idea, I just don't know where I have the time to do it right now.
I feel like my outlook on what my future may look like has changed drastically over the past year in many ways I do not know if I will ever see it differently at all.
Right now my biggest hope is that I get a good chunk of money back from my taxes so that I can put it towards my medical bills. I just can't get ahead, my guess is over the summer I am going to have to take a second job to be able to pay my bills. Hopefully by then my body can handle it.
I got an EMG the other day, that hurt like crazy. I go in to see my doctor again Wednesday and we will find out what the next step is.
Life is just exhausting!
Anyhow I am still in the rat race of trying to get better although it just seems to keep circling around. I started working out this week, I did 30 minutes on the treadmill... so that is something. I don't know what the future seems to hold for my body, although I am hoping for better results in 2013 than I have had the past two years.
I am still on all of the medication, part of me wonders if stopping it to see what it would do would be a bad idea or a good one. I would level on the side of bad from the one time I forgot to take it.
All I want is to feel normal again and feel like I can actually do things like a normal person. This is something that I really have yet to feel I have experienced. My weight is higher than it has been in a long time, not being able to have physical activity really messed with that especially over the holidays.
Part of me is thinking going back to PT a few times a month may not be a bad idea, I just don't know where I have the time to do it right now.
I feel like my outlook on what my future may look like has changed drastically over the past year in many ways I do not know if I will ever see it differently at all.
Right now my biggest hope is that I get a good chunk of money back from my taxes so that I can put it towards my medical bills. I just can't get ahead, my guess is over the summer I am going to have to take a second job to be able to pay my bills. Hopefully by then my body can handle it.
I got an EMG the other day, that hurt like crazy. I go in to see my doctor again Wednesday and we will find out what the next step is.
Life is just exhausting!
Monday, December 31, 2012
The end of the year and hopefully a new beginning
So
long 2012, you were not exactly the best year in my 30 years on this earth, for
countless reasons which I have been writing about in this blog for the past few
months.
I am still so upset with my body
and I fight every day to try and get that feeling to go away, but it seems to
just get harder not easier. Yesterday I had to go shopping for some new khakis and
I was so dismayed while trying to find something that fit and did not hurt at
the same time.
I did manage 30 minutes of exercise on a stationary bike yesterday, first actual exercise of the year, that wasn't physical therapy... but boy did I pay for it later. My goal for 2013 is to work out more and attempt to strengthen my body as much as I can to try and get through these diagnosis and problems.
I spent part of yesterday making healthy food to eat this week, so that I don't have to think too much about preparing breakfast and lunch if nothing else. I also did a lot of sitting around with heat and my Empi stym machine because I was in pain all weekend as well.
So my goal is to keep a positive outlook for 2013.
I look forward to a wonderful night tonight with great friends and welcoming 2013 which I truly hope and pray will bring a better outlook on life and a happier and healthier New Year not only for myself, but also for those people who have been there for me and who I am very honored to call my friends. Happy New Year everyone... CHEERS!
Thursday, December 27, 2012
Getting over/through the Holidays
Well Christmas is over, it was great to be back home with friends and family, I really enjoyed being around those that mean so much to me. I drove past and visited my childhood home where I have so many great holiday memories from. I tried to visit my grandparents at the cemetery but of course it was not plowed and there was a foot of snow. I drove through a storm on Friday night to get back.
I did take a little bit of a break from email and the computer. I did post to Facebook and Twitter, but I really wanted to focus on being around those people that who have supported me through all of this. I even saw some people I did not expect to see which is always nice.
I had some hurdles to get through and had a talk with my brother about all of this and kind of laid out how I was feeling to him, so I hope that helps us to make some necessary changes moving forward. I have not fully told most people what is wrong with me because I do feel some of it is extremely personal, but I needed my brother to know I need support if nothing else and I feel that is something that has really been lacking.
Yesterday, I had to drive back. Let me tell you what, I should have left at 9 am even though I had a few errands I had to run. Driving home on I-80 when no plows are out in a white out where your windshield wipers keep freezing is not ok. My usual 5 hour drive turned into 9+ hours. I got home, unpacked my car as much as I could handle and just sat down on the coach and tried to relax.
I also ended up cancelling my doctors appointment today, because quite frankly I could not sit in a car for 4 hours today, even though I do need my treatment, my body needs a break. This was my longest car trip since my surgery which already gave me anxiety but that trip home just made it worse!
So back to work and the normal grind. I hope you all had a Merry Christmas.
Also another good thing... there will be no more cookie baking until next Christmas. Although according to my 13 year old brother his favorite part of Christmas was my creme de menthe cookies. :) So I must have done something right.
| Good old South Main St. in Meadville, what a beautiful old house. |
I had some hurdles to get through and had a talk with my brother about all of this and kind of laid out how I was feeling to him, so I hope that helps us to make some necessary changes moving forward. I have not fully told most people what is wrong with me because I do feel some of it is extremely personal, but I needed my brother to know I need support if nothing else and I feel that is something that has really been lacking.
Yesterday, I had to drive back. Let me tell you what, I should have left at 9 am even though I had a few errands I had to run. Driving home on I-80 when no plows are out in a white out where your windshield wipers keep freezing is not ok. My usual 5 hour drive turned into 9+ hours. I got home, unpacked my car as much as I could handle and just sat down on the coach and tried to relax.
| This photo is what my drive home looked like, I took it while stopped at a rest stop! |
So back to work and the normal grind. I hope you all had a Merry Christmas.
Also another good thing... there will be no more cookie baking until next Christmas. Although according to my 13 year old brother his favorite part of Christmas was my creme de menthe cookies. :) So I must have done something right.
Wednesday, December 12, 2012
My spleen is better than your spleen...
Yes that is exactly what I called and told my 24 year old brother today. A few weeks ago he went into the hospital with acute pain, it just ended up he has a bruised spleen and potentially an ego since he got it playing basketball at work.
So I know my spleen is ok because of the CT Scan I received last week. Anyhow, they were looking for a hernia which they did not find or anything abnormal in my pelvis, which they did not find. There are some calcifications in my gallbladder though, which could mean that may need to come out here soon if it begins to bother me.
So now we are looking at my problem is strictly in my nerves, my femoral nerve and another nerve in my leg I do not remember the name of. I received a nerve block today which took away that pain, but that is temporary for only a few hours.
My doctor has ordered some other test on the femoral nerve that I need to have done before we decide to go any further with treatment. So this could mean another surgery in my left groin area. I need to wait and see what is going on and it is a horrible time of the year with the holidays and work so I am sure I won't get this appointment until later in January. I was also told I cannot go alone so I am going to have to find a friend to drag to Baltimore with me.
So my anxiety about the CT Scan results is better, but now I have all of these other thoughts racing through my head. In all reality I want this to end. Today is 12-12-12 a very strange date on the calendar that well is a once in a lifetime type of day and I spent most of it at the doctors getting this news.
All I can say is that I am really ready for 2013 and I hope it brings better things for my health and my life.
I have decided I am going to start doing more physical activity it is going to hurt, but I am not going to make it through working my next few events without it.
Why can't life just be easy... I hate feeling this way.
So I know my spleen is ok because of the CT Scan I received last week. Anyhow, they were looking for a hernia which they did not find or anything abnormal in my pelvis, which they did not find. There are some calcifications in my gallbladder though, which could mean that may need to come out here soon if it begins to bother me.
So now we are looking at my problem is strictly in my nerves, my femoral nerve and another nerve in my leg I do not remember the name of. I received a nerve block today which took away that pain, but that is temporary for only a few hours.
My doctor has ordered some other test on the femoral nerve that I need to have done before we decide to go any further with treatment. So this could mean another surgery in my left groin area. I need to wait and see what is going on and it is a horrible time of the year with the holidays and work so I am sure I won't get this appointment until later in January. I was also told I cannot go alone so I am going to have to find a friend to drag to Baltimore with me.
So my anxiety about the CT Scan results is better, but now I have all of these other thoughts racing through my head. In all reality I want this to end. Today is 12-12-12 a very strange date on the calendar that well is a once in a lifetime type of day and I spent most of it at the doctors getting this news.
All I can say is that I am really ready for 2013 and I hope it brings better things for my health and my life.
I have decided I am going to start doing more physical activity it is going to hurt, but I am not going to make it through working my next few events without it.
Why can't life just be easy... I hate feeling this way.
Monday, December 10, 2012
Getting through the day/week
I don't know about you, but sometimes just looking at the calendar makes me anxious.
For instance this week we will start with yesterday:
For instance this week we will start with yesterday:
- Sunday - committee meeting 11:30
- Monday - 8-5ish then run errands
- Tuesday - 5 am PT, drive 2 hours for a 9 am doctors appointment, drive directly back to work. After work stop at home drop off gym bag, grab overnight bag, drive to DC.
- Wednesday - 8:45 am appointment with surgeon to go over my CT results from last week, drive back come directly to work, clean the house
- Thursday - work 8-5ish again then home to clean and bake
- Friday - work 8-5ish then home to set up for my annual Christmas Party
- Saturday - head up to NJ to meet up with friend stay the night to be closer to NYC
- Sunday - The Grapple in the Apple at Madison Square Garden
That is my week in a very tiny nutshell and I wonder why I feel the way I do.
Tuesday, December 4, 2012
One of those days
Well for the first time in a month I went to the doctors and got my injections which is a good thing, because I really needed them. My doctor worked to re-assure me that I am doing okay and my body still has a lot of healing to do as we work on taking care of all of me not just one part of me.
Stress is just such a huge factor and being a Type A personality that wants to control everything really doesn't help at all.
So I came home tonight and drank my barium drink, I have to start another one tomorrow and then I will walk over to the hospital and get this CT Scan done, not knowing what it might show. Which if it does show anything I am to report that back to my doctor.
I was put on another medication tonight as well... to help with my nerves and to try and get them firing properly. It amazes me how messed up my body is. I just want to be a normal person again. I feel like I try so hard to feel normal and it just fires right back at me and says hello no. It is the most frustrating thing in the entire world.
But I still strive to be normal... whatever normal is. The last time I remember normal I was at a friends wedding in upstate New York having an absolute blast. Next thing I know my life changed with what I thought was a bladder infection that just got worse and worse ... and that was August of 2011.
It is December 2012, since I have turned 30 I have had two surgeries, I can't even count the number of doctors appointments, trips to the pharmacy, injections, etc that I have had to endure.
I thank God that I have some great friends who have really been there for me, they are the only reason I have made it through this... even if it is just a quick text to check on how I am doing, sometimes that means the world.
So tomorrow I have a CT, work, a meeting and I start yet another medication. The only good news when the doctor asked if I was on this medication I told him no and I was right, being that I can't keep my meds straight to begin with.
Now I will be going back to weekly doctors appointments to try and get my angry bladder to calm down. IC really does SUCK!
Stress is just such a huge factor and being a Type A personality that wants to control everything really doesn't help at all.
So I came home tonight and drank my barium drink, I have to start another one tomorrow and then I will walk over to the hospital and get this CT Scan done, not knowing what it might show. Which if it does show anything I am to report that back to my doctor.
I was put on another medication tonight as well... to help with my nerves and to try and get them firing properly. It amazes me how messed up my body is. I just want to be a normal person again. I feel like I try so hard to feel normal and it just fires right back at me and says hello no. It is the most frustrating thing in the entire world.
But I still strive to be normal... whatever normal is. The last time I remember normal I was at a friends wedding in upstate New York having an absolute blast. Next thing I know my life changed with what I thought was a bladder infection that just got worse and worse ... and that was August of 2011.
It is December 2012, since I have turned 30 I have had two surgeries, I can't even count the number of doctors appointments, trips to the pharmacy, injections, etc that I have had to endure.
I thank God that I have some great friends who have really been there for me, they are the only reason I have made it through this... even if it is just a quick text to check on how I am doing, sometimes that means the world.
So tomorrow I have a CT, work, a meeting and I start yet another medication. The only good news when the doctor asked if I was on this medication I told him no and I was right, being that I can't keep my meds straight to begin with.
Now I will be going back to weekly doctors appointments to try and get my angry bladder to calm down. IC really does SUCK!
Monday, November 26, 2012
FRUSTRATED!!!
Well it has been over a month since I last saw my surgeon and we are still trying to get my insurance to cover a CT Scan, that so far they have denied over 3 times. I am really losing my patience, because I don't feel better, I do in some ways and do not at all in others.
I still can't function without pain pills, I still take them daily. I have little to no energy at all, even if I sleep for 10 hours. The pain in my groin still hurts and throbs daily, because of Sandy, my usual doctors appointments are thrown all out of whack and I will not get in to see them until December 4th.
I feel like a total and complete mess.
My younger brother bruised his spleen and was in the hospital this weekend in severe pain and he goes "Tammy I think I got a glimpse of how you feel every day this is the worst pain I have ever had, I don't know how you do it."
That made me feel a little better that he had some way of feeling the pain, not that I want him to be in pain, but either way it is so hard to describe to someone unless they have experienced extreme pain.
So the holidays are officially here, I made it through Thanksgiving I spent it here with friends, I decided not to travel. I will be traveling for Christmas so that is a whole new ball game and something I haven't done since the surgery.
I need strength and someday's I just don't know where I am going to get it from.
I will say I did have a great time going to the movies and doing some shopping with friends over the Holiday. One thing I have to be Thankful for is friends to lift me up when I am not doing so well and my health although it is not great, it is a little better than a year ago, so all I can do is continue to try and get better.
I still can't function without pain pills, I still take them daily. I have little to no energy at all, even if I sleep for 10 hours. The pain in my groin still hurts and throbs daily, because of Sandy, my usual doctors appointments are thrown all out of whack and I will not get in to see them until December 4th.
I feel like a total and complete mess.
My younger brother bruised his spleen and was in the hospital this weekend in severe pain and he goes "Tammy I think I got a glimpse of how you feel every day this is the worst pain I have ever had, I don't know how you do it."
That made me feel a little better that he had some way of feeling the pain, not that I want him to be in pain, but either way it is so hard to describe to someone unless they have experienced extreme pain.
So the holidays are officially here, I made it through Thanksgiving I spent it here with friends, I decided not to travel. I will be traveling for Christmas so that is a whole new ball game and something I haven't done since the surgery.
I need strength and someday's I just don't know where I am going to get it from.
I will say I did have a great time going to the movies and doing some shopping with friends over the Holiday. One thing I have to be Thankful for is friends to lift me up when I am not doing so well and my health although it is not great, it is a little better than a year ago, so all I can do is continue to try and get better.
Tuesday, October 30, 2012
Getting ready for an event
So I am officially in event week and well I think it is already taking a toll on my body. Hurricane Sandy came through yesterday, luckily my house didn't get hit and we just had some rain and high winds. It did give me time to stay home from work as the office was closed and I worked from home all day.
Now the bigger question is really how does my body hold up being only 6 weeks post-op from my surgery? I have been doing my therapy and I went and saw my doctor last week. He has ordered some new test, I have to go in and get a CAT scan and some of my medications were changed. There is a possibility of a hernia on my left side and the doctor wants to rule out any other issues that I may have at this point during my healing process.
So this week is all about doing what I need to do to get through the week and the event on Saturday. I really just want to not get out of bed at all. I am not sure if my depression gets worse or my anxiety at this point, I am sure it is probably a combination of both at this point.
I eat because it makes me feel better.... even though I really need to stop eating.
One of the best things that I have done in the past few weeks was I bought a new bed and it has definitely helped my sleeping. It was time, my old bed had seen better days.
So now trying to figure out how to get through the week... I will do this I just have to be careful.
Now the bigger question is really how does my body hold up being only 6 weeks post-op from my surgery? I have been doing my therapy and I went and saw my doctor last week. He has ordered some new test, I have to go in and get a CAT scan and some of my medications were changed. There is a possibility of a hernia on my left side and the doctor wants to rule out any other issues that I may have at this point during my healing process.
So this week is all about doing what I need to do to get through the week and the event on Saturday. I really just want to not get out of bed at all. I am not sure if my depression gets worse or my anxiety at this point, I am sure it is probably a combination of both at this point.
I eat because it makes me feel better.... even though I really need to stop eating.
One of the best things that I have done in the past few weeks was I bought a new bed and it has definitely helped my sleeping. It was time, my old bed had seen better days.
So now trying to figure out how to get through the week... I will do this I just have to be careful.
Wednesday, October 17, 2012
What a week
Well my bi-weekly doctors appointment was today. I got my shots and instillation and took the 2 hour drive there and back. The doctor was also nice enough to help me out with an antibiotic for the super sinus infection that happened to strike at me today.
Some days I really wonder... I mean that is truly the last thing that I need, to get sick. With an event in three weeks and helping out with political campaigns things have been super crazy.
I am going to try and get a good nights sleep and take care of myself.
I am looking forward to tomorrow though. Apparently there is a program that Zoup has called Zoup to the Rescue and two of my friends in Colorado put my name in to possibly get this great gift. So it works out great that I am sick and getting wonderful soup delivered to my workplace tomorrow morning. So a shout out thank you to Jason and Abby Bryant.
Some days I really wonder... I mean that is truly the last thing that I need, to get sick. With an event in three weeks and helping out with political campaigns things have been super crazy.
I am going to try and get a good nights sleep and take care of myself.
I am looking forward to tomorrow though. Apparently there is a program that Zoup has called Zoup to the Rescue and two of my friends in Colorado put my name in to possibly get this great gift. So it works out great that I am sick and getting wonderful soup delivered to my workplace tomorrow morning. So a shout out thank you to Jason and Abby Bryant.
Sunday, October 14, 2012
Starting to see some changes
Well luckily my pain from the surgery is finally starting to diminish, the incisions still hurt so I still only wear sweat pants and things that don't push against my incisions.
I really don't have much energy still, sometimes I wonder how I make it through a full day. I am working to try and keep a fairly normal schedule, so doing the mandatory physical therapy is hard. I went to the gym again yesterday for therapy and I just felt even less energy.
Things that haven't changed much in terms of I feel better reclined than sitting straight up and down and I still limp a good bit from time to time because of the pain. I hope that eventually this will go away.
I need to work on keeping my body healthy and eating better. I have been trying, but man stress eating really gets me when I feel like this.
I see the doctor in two weeks so I will be interested to see how he feels that I am progressing.
The one thing that is still left out is my actual amount of being social, by the time I am done doing whatever I am suppose to do that day, I just want to come home and do nothing.
I really don't have much energy still, sometimes I wonder how I make it through a full day. I am working to try and keep a fairly normal schedule, so doing the mandatory physical therapy is hard. I went to the gym again yesterday for therapy and I just felt even less energy.
Things that haven't changed much in terms of I feel better reclined than sitting straight up and down and I still limp a good bit from time to time because of the pain. I hope that eventually this will go away.
I need to work on keeping my body healthy and eating better. I have been trying, but man stress eating really gets me when I feel like this.
I see the doctor in two weeks so I will be interested to see how he feels that I am progressing.
The one thing that is still left out is my actual amount of being social, by the time I am done doing whatever I am suppose to do that day, I just want to come home and do nothing.
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