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.

The Trouble with Travel

To any of my followers (if any of you are out there) with IC, you know that traveling can be a severe pain.... literally!

Saturday I was to make a 4+ hour drive to Ithaca, NY. I was packed and ready the night before I decided I would go to bed and get a good nights sleep, which I did. Then it hit me, I went to get out of bed when my alarm went off and I was struck with the wall of pain the minute I moved.

I had a bunch of errands to run and things I wanted to do and I just felt absolutely miserable. So that makes at least five of seven days last week that I really could not function properly. It is really getting annoying.

Either way I made the trip, the rental car I got had heated seats so that made the trip a little more bearable.

Sunday was a bunch of running around and I just felt horrible, then driving home again after the event didn't help.

Today I feel like a waste of space, my pain is up, my body just wants to fully shut down and I am fighting it every step of the way because I have to be at work and have to get things done.

This is no way to live life.

The good news: less than 2 weeks until my birthday!

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.

Make your time count

It is officially one week until Christmas. I tell you what, Christmas has completely overwhelmed me this year in every way possible.  I did manage to spend most of yesterday wrapping gifts, making chocolate covered pretzels and fudge. I still have some cookies to frost and another batch to bake to take back to my brothers when I leave on Friday. I do feel better about getting a lot done yesterday and taking all day to do it.

Not to mention Friday night was our annual Christmas Party which had at least 30 people if not more in attendance, we had a great time and I was so glad to see so many of my friends in attendance, which made for a very late night.

I got my packages shipped to my family in Florida and my family gift exchange gift to the person I will not see, so that is one check off of the list.

Today... one thing I know for sure is my bladder hates me and I am glad that I am going in for a treatment tomorrow. It is one thing to know you have to go pee, it is another to be in excruciating pain because you have pee. THIS IS NOT OK EVER! To those of you out there with IC that read this, I know you can relate, it is a miserable feeling even when you are doing everything you can to try and keep your body calm.

One thing I do know is I am grateful for the little things this year and on Saturday, I was able to meet a very good friend for dinner in Bethlehem, PA, which was mid way for both of us. On the way home I had a few Facebook notifications, I did of course wait until I got home to check them (yes I was being a safe driver).

Much to my surprise I had written on a local jewelers Facebook page that they were doing a contest with. Here was the question:
          Best "fill in the blank" answer WINS a little something for under YOUR tree!!!
          "All I want from Ream Jewelers this year is ______________"

So I figured what the heck, why not say what I would really like and what it would mean. I am all about jewelry having meaning to me. My claddagh ring was a present from my parents on my 18th birthday, on my 21st birthday I received my birthstone set in white gold. On my right hand I wear the first diamonds I have ever owned that I saved up and bought for myself.  So for the question above I thought back with reflection on this year:

"A Michael Kors watch to remind me that every minute of every day is important and to know that each minute we get is a             blessing. In good times and in bad times we need to keep ticking.... something I tell myself daily as I try and get through the pain, surgeries and doctors appointments."

This year has been a struggle, even worse than 2011 and I really do just have to take it one day and sometimes one minute at a time. This year brought me two surgeries, depression, severe chronic pain,  countless doctors appointments and procedures, lots of medication, travel to see all of these specialist, physical therapy, and some other issues I am sure I am forgetting. I have had to learn to live my life much differently which has been extremely hard and coming to terms with all of this has been even harder. Although I have physically done this alone, I have so many wonderful friends to be thankful for and I don't know what I would do without them.

So my new jewelry goal is a beautiful Michael Kors watch which I have on layaway and will slowly pay off, since my bills and medications have to take precedence. The $50 gift card that Ream Jewelers is giving me from this contest is going directly to this watch and it means so much sometimes to know that there are kind and giving people out there who will do something as simple as this when it will in turn mean so much to me in the future.

This year I have made it my goal to shop locally and buy local as much as I can. I have made some fairly big and necessary purchases all from local family owned businesses. This just encourages me to keep doing so and has earned another loyal customer, plus what young lady doesn't love jewelry? I can't wait to stop in tomorrow and apply my gift to my purchase, so in the spirit of the season Merry Christmas! I hope that everyone out there gets some type of special Christmas wish that comes true.

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!

In honor of IC Month

I thought it might be interesting to share a few facts that affect my everyday life living with IC:

•  I go to the bathroom what seems like all the time.
• I have to base the clothing I wear depending on how I feel.
• I don't think anyone fully understands what it feels like to have this problem unless they have it.
• I denied for a long time that I had IC, because I had the test done and it came back negative. However, I have learned that in 10% of people with IC can take the test with negative results, apparently I really am special.
• IC and bladder problems effect more women in this country than most would think, however many women do not seek treatment.
• The multitude of problems I have... took me months to be able to talk about without crying.

If you think you have a problem, do some research, there are some great websites out there  and talk to your doctor. One thing I have learned through this process is not to be afraid to say or ask whatever you may think while you are at the doctor. 

You yourself are the best advocate for YOU! Read here for more information on IC.

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.

Two weeks of craziness

On July 30th I headed to Ft. Lauderdale for our annual convention. You know what seems impossible? Running a 5 day event when you can hardly make it through 5 days of work.

So my plan was extra help to do my legwork, medicine, tens unit and the hot tub for heat. I used most of these modalities daily and told a few people they had to remind me to do my exercises daily, or I was to be yelled at.

Now what might have been harder when I was struggling after the long hours was explaining to the coaches who asked what was wrong with me. It always seems to be a fairly awkward conversation to have.

Either way it was a long week, with very little sleep but I made it through the week, with a lot of help. I admit that I completely crashed for the next few days, in fact it is Thursday and we ended Sunday and I still dont't feel like I am where I should be.

In fact all I want to do is sleep. I have had my moments of swinging emotions over the past few weeks, they vary quite easily it seems.

Now if only the pain would subside a little so I can attempt to get things done in my own life.

I did go see my family in Orlando for a day but I admit I was miserable and didn't want to do anything, so I am sure they were thrilled but also realized that this is serious and sait isn't changing that quickly.

Oh yeah did I mention that I haven't been to the doctors in two full weeks, which is strange since that is all I have done since the last week of March.

How do you know...

So I have been feeling even more out of sorts lately than I usually do and I am not fully sure what to attribute that to just yet...but I have a small inkling of an idea.

But I called into the doctor and told them I think I may actually have a bladder infection or form of UTI, but it is really hard to tell when you have IC  (at least I am finding it hard to tell, because you always have horrible pain and you go to the bathroom a lot!). For those of you who don't know what IC is it is Interstitial Cystitis and you can find more information on it here.

Anyhow that means another prescription for preventative measures I guess, so another trip to the pharmacy tonight.

I would love to just not be in pain and get a good nights sleep here at some point, sometimes it is the little things.