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.

Depression SUCKS

So after returning home from the DC area on Friday evening, I really felt like things were hitting me really hard and that I was honestly all alone. I know that is not necessarily the case, but it is how you feel when you are depressed.

I did run a few errands on Saturday morning that I had to do and then I came home and literally laid in bed for hours. I was able to talk to my best friend for a bit which helped me think through things a little bit. I just honestly wanted to cry every time I thought about what was going on and what I need to get prepared for.

I even asked the pharmacist when I should bring everything in to get filled. I just feel so overwhelmed from top to bottom at this point and I almost feel like I don't know which way is up.

Last night I made myself leave the house and go to dinner, but I went alone and if nothing else had a great meal before coming home to watch TV and try and calm myself down without crying again.

Today was a little bit of the same. I went to church and then hit up the movie theater to see Batman, which was awesome, I wish I would have seen it earlier.

So a lot to get done this week and figured out at work, I don't even know where to start that and I think that is a huge point of anxiety for me right now.

So my biggest thought this weekend is how much depression sucks. I know I am taking medications to help, but I can say that I know for sure what I am experiencing is not helping to get me out of this hole I have fallen into. I can only hope that as my pain gets better and my quality of life gets better, so will this.

Always remember the people you see out may look normal but you never know what may be going on with them, so be kind.

Anyhow time to try and get some rest.

Tentative Surgery Date...

I went to DC to see the nerve specialist on Friday, I knew that I was going down to get a consultation for surgery, but the whole thing ht me a lot harder than I anticipated.

I have never in my life had two surgeries in one year, these are placed six months apart. So I am getting ready to figure out how to transplant my life for a little bit. I have to take two weeks off of work, which I don't have to take off due to all of the medical issues this year.

So the surgeon is talking about a 2 1/2 hour surgery that will be removing/displacing three of my nerves in my pelvis, this will take away the pain once I am healed, but will involve quite a bit of pain during recovery. These are sensory nerves so they can be taken out without effecting movement in my leg.

The doctor is unsure if I will need another surgery at this point to hep with other nerves but it is possible.

So I will be staying down in DC for about a week once I have the surgery incase I have any complications. Either way this is not exactly what I thought I would be, all I can do is hope that it allows me to lead a more normal life than I currently am.

I had a good bit of an anxiety attack after leaving the doctors and on the drive home last night. Today hasn't been much better, but I am just trying to make it.

So as of right now September 18th is the date.

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. 

Sometimes a photo says 1000 words

I ran across this last week on Facebook (not sure the original source) and I feel like it truly sums up how I feel the majority of the time.

Sometimes as strong as you try to be, you need someone to be there for you.... even when you tell them no.

I will say when all of this first got started with my I withdrew from a lot of things especially socially. I was in no romantic relationship, but my friendships have suffered greatly. I do however know who my true friends are after all of this.

So just remember if you are reading this, you are not alone there are people who are there for you, you just need to open your eyes and realize who they are.

More Travel

The past few weeks have been crazy and unfortunately I have not had a chance to blog much. I will say my body does not take travel as well as it use to that is for sure.

I got back from Florida on August 8th, had my normal doctor appointments on the 13th and 15th and then headed to New Orleans for a conference on the 16th.

I have always pushed myself too much and I know that I do it, but I really enjoy having fun and meeting new people. So I have to say this past weekend was an absolute blast, but my body needs some serious recovery time.

On Saturday I hit a very high pain day, so bad it was going almost the whole way down my leg which was just miserable, it literally made me sick.  The only saving grace I had was the fact that I had my portable Empi Unit with me to help relieve some of the pain, now the bigger issue is getting my insurace to keep paying for that because right now they are only giving me 2 months with it.

I don't want to get started on health care and insurance becuase I am lucky to have coverage but when you have a serious problem that will not go away and they have the ability to completely limit the type of care that you can get is just so disheartening and honestly just adds to the depression (not to mention the amount of money I am paying). I mean what do I do when I don't have coverage for physical therapy any more or I can't keep my unit to help me control my pain? Thinking about it makes me want to cry so I try not to, but at some point I fully have to address this... I don't know when I have the time.

Did I mention I really just want to be a normal 30 year old... whatever that is exactly.

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.