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.

This is really getting old

Well my surgery is less than 2 months away... check that is on the calendar.
Doctors appointments weekly... check that is still on the calendar.
Feeling miserable a lot... takes over my entire life!

The past few days have just been absolutely horrible, the pain was just unbearable even with the medicaitons and stronger medications. I feel like my body has surpassed the boundary of what pain really should be and it made it worse.  I was so just overwhelmed I almost called and cancelled my appointment because I did not want to be in the car for four  hours. I am glad I went and we are trying out another medication I hope that will help, but it will take a little time before we see any changes.

Of course I was asked if I could move the surgery up and I said not a chance, to any of my wrestling fan friends, you obviously know why. Speaking of wrestling we took a huge hit this week with the IOC, dropping wrestling starting at the 2020 games, which is just bull!

I feel like I am doing everything to just keep myself together and that is taking everything that I have right now. I told my doctor let's just get through the next eight weeks and then figure it out from there. Then I will deal with the surgery and what I am going to do about that. Not to mention in the middle of all of this is my birthday, I never thought this is what my life would be like as I was getting ready to turn 31. In all honesty I thought I would be married by now with the beginnings of a family. I guess you never know where life will take you, but I know part of that road it won't be taking me on.

But since I was 29 I feel like all I have known in my life is this horrible pain that just creates a black whole. Yesterday I told my doctor that I literally could not get out of bed, every fiber of my being said no. It was such a challenge. I am thankful that I have understanding doctors. As of April 18th it will have been a year since I first saw this specialist, and March 29th marks the first surgery that lead me into this spiral of life.

Well all I can say is that my hope is still that my 31st year on this earth will still be a good one to me.

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.

September IC Awareness Month

Well while I was at the doctor's yesterday getting my nerve blocks and injections, I noticed a bunch of fliers around for IC Awareness in the month of September. Honestly I didn't know anything about IC until I was told I may have it by the doctor. I wasn't fully diagnosed until April.

I am one in 10% who was tested for IC and had a negative test, but still have IC.

For more information on IC take a look at this webpage which will provide a lot of educational information over the course of the next month.

I guess we even have a ribbon which is teal in color (the same as ovarian cancer and a few others), either way to all of the other IC diagnosed women out there, we can do this and we need to continue to spread the word and educate those around us.

My one year anniversary

Wow, that sure feels like a sad thing to say. I have extremely mixed feelings on saying it is my one year anniversary of feeling miserable this month. My symptoms started in early August 2011 and just continued to get worse as the days went on. (Let me just explain to anyone this is not how you want to live your life or spend the rest of your summer).

So it makes me reflect back on the past year which has been quite the roller coaster of a journey:

• I have been to so many doctors and doctors appointments I lost count.
• The amount of money I have spent going to the doctors and on medications literally makes me sick.
• When my pain gets to a certain level that also makes me sick.
• I have had one diagnostic surgery which just put me in more pain, which happened in March. The good thing, I know my reproductive system is good.
• I also cannot remember the actual list of medications that I am on, thank God for a good Pharmacists. 
• I have had to do some travel and labor intensive work, that is the nature of my job. I cannot fathom how truly strong my body is some days to make it through these events. It is almost scary to realize the level of pain that I am in that my body somehow functions with. 
• There has been a lot of reflecting on my part, about who I am and what I want. Also the people that I can truly call friends and who were there for me when I needed it.  It is so hard being out on your own and not having a significant other. I am very blessed to have some good friends who have been there for me. I wish some days my family and best friend were not so far away, but sometimes life just takes you different directions.
• This should not come as a shock to those who have known me for a long time but I have a very hard time opening up about my feelings. It took me months to start telling people I was having problems. After my diagnosis in April, I couldn't talk about it without crying like a baby... I am finally getting better about that. Although I find it interesting some people I seem to have no issue saying what my issue is to and others I do. 
• I have shed more tears this year than I can ever remember. My hormones hate me, my body hates me and well the medicine is a whole other story.
• The medications that I can't keep straight I have to keep in an a.m./p.m. pill case. Definitely not where I thought I would be when I hit 30 years old.
• I thank God for finding the right doctor who is working to get me better along with his team.
• I think I am finally turning a corner where I can fathom the thought of allowing a person close to me, physically and mentally. Eventually I will get there and maybe someday I will meet the right guy, but for now I am still just trying to focus on getting better.

I can only imagine now that there are other women out there going through these problems and have no idea where to turn, I guess all I can say to that is don't give up.

One doctor early on in this journey, looked at me and said what do you think is wrong with your body? I told him my thoughts and he said you seem to know your body pretty well and I would say what you think is right, because you do not belong in my office. So if nothing else I have found some doctors that seem to listen pretty well.

This is not really an anniversary to celebrate, because well just like how I feel right now it is painful, but I am going to keep pushing through until I get to where I need to be. Right now I am where I need to be and getting my proper treatment. Tomorrow brings another appointment with a nerve specialist, which should set me up for a surgical procedure, hopefully sooner than later and put me on the path to wellness.

Another photo I found that sums up many of my thoughts, not sure of it's origin but it was floating around on Facebook and I find the words to be so very true. 

Now where to?

My biggest fear was being told I was imagining my pain and misery. Literally this is all I could think about after my surgery. As I laid on the couch for two weeks.

 Luckily my OBGYN who was great through this whole process consulted with others and gave me three specialist to look up. After some research I settled on a doctor, who is two hours away, but what they described their practice as felt like it pertained to me. So I filled out a 28 page medical history and had my records release to him, a week later I had an appointment. Needless to say I did not in ny way know what to expect next. I had an 8 am appointment and I left that office around 1 pm.

The ultimate mental/emotional/physical overload had just hit me like a wall. (I will go into some of this in more detail in the future). What I did know leaving that day is that I have multiple diagnoses and they are all over the board (by multiple I mean we are up to two-hand type of counting and higher). Also there is some correlation to my years of sports injuries that have mainly occured on my left side. It is hard to explain how I felt leaving that day after setting up my next appointment, I just wanted to sit in the corner and cry. I felt overwhelmed and alone. I went to lunch after that because I was starving and I did everything in my power to hold back the tears as I continued to digest what I was just told/shown and how all I could think of is I am going to have this problem for the rest of my life.

I am not sure how in depth I will go on my multiple diagnoses in this blog as some of them are extremely personal, but they are important and play a large part to my over all well being right now.

 I did call a few friends on the way back but I hadn't really taken it all in. The appointment was separated into parts: medical history, family history, anatomy lesson, talk of my recent surgery, test, lots of statistics, reading how I responded and acted, etc... So I left with a large packet of reading materials and a stack of prescriptions I had to start... My first thought, I need am/pm pill box.

 I mean I know I just turned 30 but really?