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.

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.

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!

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.

Post-op Appointment

So I went to see my normal doctor today, for my post-op check up and get my normal nerve blocks and instillation.

This was my first big outing since the surgery by myself, which included a two hour drive there and a two hour drive back home in pretty bad rain.

Well I did not end up getting my treatments, but I did talk to the doctor about the pain I am in, not sleeping at night and my recovery time. Next week I start water physical therapy, which I am not looking forward to, but I have to do it.

Going through this does not at any point get easier, it just seems to be getting harder even though I feel like it should be getting easier, since I have been being treated since April.

Now I know that surgery is a trauma to my body, which means the body will go into a state of shock and be miserable for a period of time while it heals itself. I know that is the stage that I am in right now, but I feel like there is no end in sight even though I know at some point there will be.

I am glad I have my friends to talk to, but sometimes going to the doctors alone while dealing with this can be really hard. The only time throughout this that I have taken someone with me was when my friend Brooke came with me to surgery two weeks ago.

The fact that it is exactly two weeks to the day that I had surgery, I just need to keep pushing on, no matter how hard it hurts.